A few days after I published this post, the nice folks at WordPress “Freshly Pressed” it. A big honor and one I am very thankful for. Because of that, I ended up meeting lots of new readers and bloggers. Thanks so much, WordPress!
1. Not knowing is a lot harder than knowing. Yes, there is a lot we can do via therapy to help our children walk, talk, learn, etc. But the hardest thing to admit is that most of it is simply up to their brain and its wiring. There are no certain predictors that a special needs child will develop speech, be able to read, be potty-trained, or become self-sufficient . Good signs, yes. But nothing is certain. The not knowing can drive you crazy if you let it.
2. The internet is a blessing and a curse. On one hand, there is valuable information out there. Yet, information overload can get you stuck. You end up reading too many awful things — that often don’t apply to your child at all — and it can deplete your hope and make you paranoid.
3. Connecting to the special-needs community (whether it be acquaintances, support groups, or the internet) can be both a lifesaver and bummer. It is vital to find people who know what you are going through. Yet, sometimes it can produce even more negative feelings. Since there is always someone who has it worse than you, it can make you feel guilty for complaining. And, since there is always someone else who has it much better, you can sometimes forget that, when it comes to parenting, stress and worry are relative. Those people are just as immersed in their concern over their children as you are and, understandably, aren’t grateful simply because it could be worse. It can always be worse.
4. Holidays and special events magnify the situation. Birthday parties are no longer joyful events. Your special needs child is in an unfamiliar setting, one with all kinds of new dangers. You actually have to observe typical children alongside your child, so his delays and social difficulties are painfully obvious. People naturally want to know what to buy your child. And you might not know. He might not play with toys. And you will have to endure the present opening and cake cutting that your child is tuning out in front of everyone present. No matter what is said and done, there is an air of sadness. Ditto for Christmas.
5. Well-intentioned people will silence you and add to your frustration. They don’t mean to, but it is human nature to comfort and soothe. Invariably, they will attempt to do so in awful ways. Some will deny there is a problem and say that everything will be just fine. By denying there is even a problem, they effectively silence you and leave you isolated in your own mind. Some will try to remind you how grateful you should feel. And, while gratitude is a great thing, being reminded that you aren’t just makes you feel worse.
6. Picking your battles will take on a whole new meaning. A lot of folks will look at you like you are crazy for “giving in” to a 24/7 diet consisting of nothing but chicken nuggets and crackers. Even more will judge you for “giving in” to what they view as tantrums and being spoiled. You, however, know that therapy, joint attention activities, and getting to school are the real nonnegotiables.
7. People will surprise you. Causal acquaintances will step up to be better friends than the friends you most believed you could count on. There is nothing like becoming a special needs parent to give one clarity.
8. Doctors and other experts really don’t know everything. Your pediatrician and other persons doing behavioral screening may not see what you are so worried about and may try to convince you nothing is wrong. They may encourage you to wait and see. You will want to believe them and may forget that child development really isn’t their speciality.
9. If you aren’t a naturally assertive person, you will have to become one. People ranging from loved ones to Early Steps to the school system will give you a lot of reasons why they can’t meet your child’s needs. Even if it goes against your nature, you will have to fight for him. You will have to insist — which is both harder and easier than you might expect.
10. It’s easy to neglect others when you are caught up with the needs of one child. You can forget the importance of date night with your spouse. You might forget a friend or loved one’s birthday. You might realize that your typically developing children aren’t getting enough attention from you. And you might realize you are not taking care of yourself and are about to fall apart. You will have to figure out a way to stay both connected and together. This is hardest thing to learn and do of all.
11. You will develop an appreciation for the little things. There are moments of interaction and progress that will steal your breath. Hugs and kisses are unbelievably precious. And you will understand why this little soul was given to you. It’s because you are a perfect match for one another. And that is what sustains you through everything else.
So, what about you? What have you learned?
If you liked this post, you might also like these:
Letter to My NT (Neurotypical) Child
An Apology From Your Child’s Former Teacher
From the Rooftop: Autism Disclosure
Dear Friend Whom I Haven’t Seen Much of Lately
Stirring Up a Hornet’s Nest: Free Advice and the Vaccine Controversy
Flappiness Is... 
[…] 11 Things I’ve Learned Since Becoming a Special-Needs Parent […]
This all rings so true, but none more so than #7. Sometimes you find out, very painfully, that the people you count on the most for support (supposed best friends & family) are the one’s who desert you the quickest!
Yeah, they do. I think they just don’t know how and, instead of jumping in anyway, avoid. If I could say anything to friends and family of families just diagnosed on the spectrum, I would say not to run away. Just ask how to help. And get them out of the house for a while when you can.
Great post! I’m an older brother to a child with Down syndrome, and can relate to most of what you have said.
I find that connecting to others in the special needs community is usually more of a positive than negative, as they’ll likely know something you don’t know and can guide you. And yes, sometimes knowing that you don’t have it as bad as others can make you feel guilty for complaining, but I think overall it makes us appreciate our personal circumstances that much more.
Two things that I have learned:
1. You don’t always have to try and educate or correct people who are unfamiliar with your child’s/sibling’s/relative’s condition. It’s important to know when it’s necessary to say something and when it can be let alone.
2. People will naturally be intrigued with an unfamiliar condition. Sometimes people stare at children with conditions/disabilities simply because they are curious, and not because they mean any harm. I’ve had to learn to not give a mean stare back at people who stare at my brother, after all he doesn’t notice it nor would know the intent behind it.
I learned a lot from your post!
I’m 17-years-old and have a 13-year-old sister with Down Syndrome. We truly are blessed, I can’t imagine her being any other way. She isn’t as severe as others, but she does learn slower and I feel so bad when I’m always doing things with my friends and she’s at home alone. She is involved in a lot of sports though that she enjoys. She is also very organized, crafty, and loves to sing. My parents definitely had to invest more time in her, but my siblings are I have been totally accepting of that. She has definitely taught us all acceptance and patience. I know a lot of other people with special needs, and I’m sure it has to be really tough to know what to do in certain situations. We always treat my sister like anyone else, she gets no special privileges, and gets in trouble if she does something she shouldn’t be doing. There is an autistic boy in my ceramics class who has an aid with him. His aid makes sure he does everything everyone else is doing and helps him with it, I think it’s great. I wish some people were more accepting of people with special needs.
true love is limitless
So much care. So much to learn. So much to offer.
Hi, Leigh. I recently found out I have ADD, and got screened and diagnosed on my own. It was difficult for me because my entire family is on the other side of the world; your family is so blessed to have you with them. I still don’t know much about my newfound disability and sometimes it scares me so much, but I am hoping that one day this will all make sense to me. Have a wonderful year!
My husband has the “H” variety of ADD – ADHD. As you read about it, you will begin to understand a lot about yourself. We actually laugh quite a bit about it, though I am aware it really does negatively impact lives. I think it is important to keep a sense of humor. Good luck finding more information to help you understand. You should consider also looking up some ADD/ADHD support sites online and maybe joining that community.
This is a wonderful post! Thank you so much for sharing!! My son has Aspreger’s we went thru a pretty bleak period a few years ago and it was damn HARD! I know excatly what you are talking about!
I feel etremely blessed that we were able to find and make changes in my sons diet and also with the help of lots of OT he is now very high functioning and life is finally somewhat “normal”. We still struggle with a lot of these same issues, they are jsut not as extreme anymore.
All I could do back then was take it one day at a time, thats really all you can do. And- thru all of the choas when his personality finally shone thru I had more joy and happiness and felt litke my heart could burst and then I realized it was all worth it.
I love hearing positive outcomes like yours. Thanks for sharing. 🙂
Very well put. Parenting a special needs child is a pioneering effort, no matter how you slice it. It’s all about making the most out of the least, and in the end we are so much stronger for it than had we not embarked (nay, been thrown into) this challenge! Blessings to you and your dear family. And thank you for voicing the Way It Is for us.
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Thank you for opening another facet of special needs children to us! I’ll take this to heart, especially as a teacher. Happy new year!
I loved your blog. Thank you for sharing your knowledge on the subject. I will share it so that others may learn and benefit from it. I, myself, am interested in learning more about special needs in children, because I think that it is important. People need to become aware and sensitive to the needs of others. But that doesn’t happen just like that. Education on topics like this one is a need, so I found your blog educational.
My church has a special needs ministry that I volunteer for. We had a boy come in who could barely sit through a full service. He would leave after the children’s sermon and I would take him to a classroom and mentor him. We would play bible oriented games on the computer. We did this for a little over a year. Eventually he got to the point where he could sit through a full service. That’s very rewarding to see him sit through a full service each Sunday with his parents.
I have a child with special health concerns (as well as one on the spectrum) and I just nodded along with all of these.
One thing I’ve learned is that it’s OK to cry…it’s OK to let people know it’s hard. AND, you don’t HAVE to do it alone.
You have a wonderful way of putting into words what others feel…such a gift that is.
Beautiful post. I’m a teenager who’s been working with special kids during a part-time job, and I find this post touching and thought-provoking. Thank you for sharing this. 🙂
I’ve learned that parenting a child with special needs will bring you more joy than you ever thought possible, and that within each child is a gift. Sometimes it takes longer to see it, but each child is a blessing and is here for a reason.
Well-said Lisa! Yes we’re all here for a reason; God has a plan for each one of us.
They definitely get better, and not just for you. I found out that I was autistic too late for school, and almost too late for life. After decades of trying to figure out why everyone else was crazy, and why I was unlovable, then I got the answer. And then I felt worse… it wasn’t just a flaw but something I can’t change. I became a whole new kind of depressed.
And then out of nowhere, I met a man who loves all of my crazy quirks. I have connected with someone on a level that I never thought possible for me. I don’t have to use all of my shortcuts and “rules” to figure out what he’s feeling. I just know! That has never happened for me.
Whether I got better at figuring people out, or I just happened to run across a very expressive man (either is equally as likely) it doesn’t matter. The point is that I am now engaged to the love of my life, and for the first time I know what all the fuss is about.
So things get better for the child as well. 😀
P.S. Congratulations on “freshly Pressed”. Your voice is being heard and I thank you for it.
Well thought out post that touches each of us, whether parent, sibling, friend, relative, or a passer-by.
The thing I like the least is being on centre-stage. Though I am not shy, I just tire of when I am in public, always being centre-stage when I am with my son. Some days, I just want to be lost in the crowd.
I am also far more empathetic to the under-dog, doesn’t matter who it is. Always there to help. Though I get the other side of most things, I don’t have the patience for things like I once did. I use my patience for those that require it, not for those that abuse it. Government agencies abuse it. There to help, but I honestly believe if I sat down and calculated all the time I have devoted to filling out forms, answering questions, etc., I’m not so sure the help was actually help.
Hi
Well, I love your 9 and 10. I’m registered blind and in my 30s now, so I guess I was what you’d call a ‘Special needs child’. I wish my parents had been given 9 and 10 as advice before they brought me up! Back in the ’80s for example, because I had special needs, my local authority wouldn’t put me in a mainstream nursery. I was in a nursery with other special needs children, and none of them could speak, so the only people I could communicate with were the staff. It’s very difficult for parents to know whether to fight I think. If you’re told no, and it’s the first child you’ve had in that situation and you’re not in contact with any other children in the same boat, I guess you just accept what they tell you. I’m sure too that there must have been times when my sister felt neglected, because I needed things explained to me, whereas she could learn by watching people, but Mum and Dad didn’t purposely neglect her. I suppose what I’m really trying to say is if there are any parents reading this who’ve had special needs children, please don’t look at the advice and feel guilty that you didn’t do a better job. If you’ve done your best, like my parents did, I think that’s all anyone can ask.
And my bit of advice, if you want it, would be this: If I’d heard people say when I was growing up that others were typical children and I wasn’t, it would have really hurt me. What I really wanted, specially when I was a teenager, was to be thought-of as normal. Maybe a better way to look at it is that every child is different, and there’s no ‘Typical child’? Ok; some of us might have what the education authorities would call special needs, but other children have needs too and every child should be accepted for who they are.
Thank you for sharing about your life and the things you’ve learnt. It’s interesting to read about it from a parent’s perspective.
I love the post! ( : going to share with my mother!
Just this year, I took a special education course on controversial topics for this particular field. I felt that, as a teacher, it would be extremely helpful for me to learn all of this information, which may be beneficial in the future.
Based on what I learned from that class, I think you make extremely valid points, and I never realized how difficult it was for parents of special needs children. I also learned that teachers NEED to learn this type of information or NEED TO KNOW where to look for this information because parents usually refer to the teachers first. It’s really unfortunate that many teachers have little education in assisting special needs children and their parents…
It’s also vital to know that there is a lot of research out there that advertise and promote certain therapies, but it is so difficult to find accurate and completely reliable information. I don’t think it is up to the “experts” to determine what your child needs, and it should be the parents’ decision and analysis of what they think is right for their child(ren).
I think many teachers and professionals can benefit from reading your blog, especially when there is always a need to include parents within the classroom. Teachers can only accomplish this if they take into account parents’ feelings and desires, right?
(Whoa…sorry for writing so much. I get pretty passionate when it relates to education and teaching.) Thank you for the wonderful read, and I wish you the best!
Happy New Year! 🙂
As a special needs child (well former child anyway), oh how I wish there were more teachers like you! I have had so many teachers that just blamed me for being lazy or rude or selfish or oversensitive or naughty. After years of that, I took over that dialogue myself. Yet those few teachers, whom I can count on one hand, inspired me and made me believe I can actually amount to something. Those precious few touched me in a way I think they’ll never know.
And there are some fortunate students out there that one day will remember how you touched and improved their lives. You have no idea how much that simple act means to me. (and being autistic maybe I can’t really express it anyway lol)
Nice help ,
One of the many hard things I have had to do is parenting my parents on how each of my children are different and special in their own way.
My son has CP and this is exactly how I feel 99% of the time. I was turned onto your blog by a friend and I love it. I relate in so many ways and I thank you for telling the world how amazing and hard being a special parent is! ❤
My wife introduced me to your blog a few days ago. What an inspiration, a gift really. Thanks to people like yourself who have opened up your whole life, I’ve recently decided to do the same thing from the perspective of a daddy. Thank you so much and I can only hope that someday my stories inspire someone to do the same. Bless you and your beautiful family.
I think point #11 is probably the most important part to remember. We need them in our lives as much as they need us. I have 3 children, the youngest was diagnosed at developmental delay at 2, but has since progressed very fast. He is now 4 and starting to form partial phrases. Of all of my children, I think he is the happiest and most loving of all.
I also feel that God uses these amazing children to teach us things. I went to a convention at a church where they displayed all of their ministries in several hours in a parade type fashion. Of the maybe 30-40 different groups, the ones that touch me the most was the special needs group. One young lady brought a violin on stage and offered to play Amazing Grace. By far not a symphony quality performance, however I do not believe I have ever seen a more sincere heart give a rendition that moving. There was not a single person sitting or a dry eye in the building by the conclusion.
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You have a great blog and blog page, along with your writing and sharing. I had a client whose son was autistic and his son was so very talented. I really think it takes a very special kind of person to be a parent for a special needs child and I commend you for being strong and sharing your life, thoughts and story. Hope to read and learn more!
Thank you for sharing. Anyone faced with these circumstances will find this post to be a great guide, knowing one is not alone.
It’s like you are writing from MY life, my JOURNEY….thanks for all you do. New to this journey of autism but my path is getting brighter by all the support and friendships I have made along the way, thanks:)
Kristen
[…] go through to try to help him “act normal”, is very demanding on him and us. The blog Flappiness Is is a mom who also has a child that has a form of Autism. One of the blogs was posted by a mom […]
I am so glad to have found your blog. You are an incredible writer and take the jumbled thoughts right out of my head—-and make sense of them!;)
#7 seems to really keep hitting me, over and over…and over. We are at the beginning of our journey with our daughter (yes, a girl!) just about eighth months since we had an official diagnosis and I just can’t believe the people who have backed away, or don’t forgive that we have to cancel plans, or comment that our daughter seems ‘better’, or no ‘that bad’. Seems like one hurt after another—I just can’t keep up with people anymore. I’ve given some slack, but I’m just about all used up, already. Perhaps in time, I just won’t care about these people anymore? Right now, it just burns.
I have learned what it’s like to be on the parent side of an initial IEP after being on the teacher or administrator side for 12 years. I supported my sister-in-law and several friends through IEP’s. It’s a whole different world!
I also pick my battles, I don’t sweat the small stuff. Yes I have 6 boxes of cereal I cannot eat but it kept my son from having an outburst in the grocery store because of the Spongebob toy in the box. I have family who have tried telling me my son doesn’t have Autism, it’s just bad parenting. I also have family, my now ex-in-laws, who want nothing to do with MY son. He has cousins born around the same time as him who are NT and they are spoiled. Sorry (actually I’m not sorry) I refuse to leave my son with people who are drunk and don’t care about him. I am raising my son in the way that works best for us, if you don’t like it well that’s your problem. I’m too busy working on ways to help him become the most amazing little boy, which he already is, to care what you think. And about his hair, so what if its a little long and gets in his eyes, he doesn’t want it trimmed so back off. His cute lil curls are NOT ruining your stupid pictures so shut up! (gotta love those ex-in-laws) Yes I am a single parent, his dad doesn’t make time for him, and guess what, my son isn’t stupid, he knows. He might only be 4 yrs old but he knows who has always been there for him and who will always be here, his mom.
Autism as been with us for decades unnoticed but thanks to IT, average Nigerian can identify what autism is. Before now it is refer to as imbecile, NGOs are all over assisting the parents & the sufferer. Thanks to the forum like this that free us from the shackles of ignorance
I have worked in special ed for over 8 years now and these little angels teach me much more then I could ever teach them. I started in Early Childhood with Autistic children and I loved that age and class, for the last 6 years I have worked with children in Early Childhood that have multi needs. I love my job.
I own a company with a teacher I work with that sells natural, gluten free products if you are interested, we have a lot of parents at our school that use natural products.You can find it on my blog its called No Gluten Natural Girl Products,
I will forward this to other parents, support is very important. Great job on being Freshly Pressed
Wonderful list with much to say to all parents. I resolve to harness my good intentions and to join you in appreciation of the little things.
My kids are both lucky enough to have special needs kids in their classes at school. They have learned many things from these friends over the years, not the least of which is that everybody sees the world in different ways than you do. They have also learnt that even if someone is non-verbal, it doesn’t mean they don’t have anything to say! I have become good friends with both mothers and my admiration for them is unbounded. I know they have hard days, I know each day is a new adventure in negotiation and I know at times they feel far from admirable. All the more reason for people to appreciate them, and all of you other special needs mums too!
I really enjoyed your list, congrats on being FP 🙂
I’ve learned that people will argue your child’s diagnosis because he isn’t “Rain Man” even though they don’t know anything about autism.
I’ve learned to stand with my head held high so I can teach my son to be proud as well.
Different isn’t wrong. Different isn’t bad. It’s just different.
I’ve learned to slow down in life and to cherish those moments that steal your breath. For me, those moments happen any time my son hugs me and says he love me. 🙂
My grandson has some issues. I fear that I have not always understood the challenges but I want to and I am beginning to. He is high functioning and absolutely handsome child. It seems impossible for there to be issues. I will share this with my daughter.
You just earned the adoration of every mama and daddy reading this. The willingness to learn and help is all your children could hope for. I would encourage you to go to any online book store and enter Asperger’s or autism in the search bar. You will find a wealth of wonderful books to choose from that will help you to understand. Thanks for being such a wonderful grandmother. 🙂
Very well thought out. Picking your battles is the tough part for me.
p.s. forgot to add, I’ve learned taking care of yourself is soooo important. You can’t take of your special needs child when you are not emotionally and physically healthy yourself. Find time alone and something that makes you happy. Exercise is great. I took up running last year when I was badly stressed and it changed my life. It made me physically able to deal with a 50-lb bundle of meltdown mania and gives me the mental strength I need. I just ran my first marathon, something a year ago I’d have never dreamed possible, so I have confidence that if I can do that I can handle whatever challenges parenting throws my way :).
Good luck in your journey with your wonderful kids!
What a great and insightful post. My HFA son is 6 and I have definitely learned a lot over the past few years. Your #4 is so sad but true. But we came from complete holiday season disaster 2 yrs ago to a good one this year. The key is to adjust your expectations appropriately. I think we come to parenting with a list of expectations about what a family is supposed to do and enjoy, be it from your own childhood or seeing what friends do. I have learned you need to throw that list out the window. Yeah, my kid will never get a picture with Santa or hear people sing holiday songs without screaming, but so what? Find what makes holidays and birthdays (and vacations for that matter) work happily for your family and do it.
I have learned I appreciate empathy, not sympathy. I don’t want people to tell me how sorry they am for me that I have a child with autism. I’m not sorry. I am deeply sorry that some things in life are hard for him though. I have learned that without a doubt the most heartbreaking thing I’ve dealt with in my life is seeing my little boy depressed or severely anxious. Kids should be happy and relatively stress-free. But I have also learned my son is the bravest kid I know. The amount of guts it takes for him just to walk into school every day is huge. Ok, I have to carry him in kicking some days, but he goes :). I’ve learned how important it is for me to remember that courage, and all the million other things about him that are absoluetly wonderful, on the hard days.
This is really a beautiful post and I think probably one of the biggest ones is having to step up and fight for your kid, even if you may be a soft-spoken person, you will have to fight for what you know your child needs.
Great post! I beleive all of the eleven things you listed apply to any form of permanent disability, sickness or trauma us humans endure while navigating life.
Thank you for sharing!
GOD bless you and your family two and four-legged!
It is a book
I have a special needs son who is also developmentally delayed. From him I have learned more about the meaning of try try cry and keep trying again. He is amazing. He inspires me to keep going when I do not want too.
I’m not a parent of an autistic child but I have worked with kids with CP (as a provider). I was asked to help with an autistic child once, which was awkward because I knew very very little about autism and after I spoke with the parents they agreed to have someone else work with him. I felt really bad and since them I have wanted to learn more. I have read some but I like reading things from real parents instead of websites. Can you recommend any good sources?
Yes, I can. Try this book: http://flappinessis.com/2011/12/15/book-review-the-way-i-see-it-by-temple-grandin/
And Temple Grandin’s other book – Thinking in Pictures. Temple Grandin is the world’s most famous autistic. She is fascinating and brilliant. there are other good books out there by great autistic writers, but these two would be my starters.
I have a disabled 13 year old who has taken us on a roller coaster ride ride of positivity and negativity as her situation has progressed /deteriorated to now being quadriplegic and on a ventilator. The two most important thing I have learned
1: – choose very carefully how to answer the question “how are you? Every time you are asked this question you will have to make a decision on what to answer – the truth which may/will often be hard to hear frightens, intimidates and ultimately bores other people and then drives them away. No one wants to hear the negative reality so start getting good at positive upbeat answers if you want to maintain friendships and keep people in your life.
and
2: if you are going to have a Special Needs Child make sure you have Money. Doctors, therapists, special equipment, medication, insurance, replacing all the things that are broken or damaged – sucks up vast quantities of money.
But as you say in number 11, then there are those wonderful amazing little moments when your child connects with you and reminds you with a look or a smile or a word or a stroke of your face that you are important to them just for being you and for all you do for them. Keep the faith – stay strong. Great writing thank you for sharing.
When friends ask me how I’m doing, I often say, “Do you want the truth or the press release version?” 🙂
Thanks for sharing.
I am a retired special education teacher, so I was intrigued when I saw your post. I think the biggest lesson I have learned throughout my years of teaching is: Attitude is the real disability… and that applies to everyone. Thank you for a wonderful post. 🙂
What a wonderful post. Thank you for sharing.
I had an older brother who was an extreme special needs child. I currently work in an elementary school and we try to involve the ” special” needs kids in everything we do. But I see how technology has done so much – many of the things we have today were not even dreamed of when my brother was alive 25 years ago.
Leigh,
I think you pretty much nailed it. I would add that the misconception that these kids are rigid and unadaptable, incorrect as that might be, is another hurdle you will often have to navigate. I find autistic children very adaptable, considering the manifold challenges they face. Unfortunately, the rigid ones often times are the educators, administrators and health care professionals assigned to help them. Ironic.
Strength and patience in your journey.
Thank you for this. Our six-year-old son was recently diagnosed with epilepsy, and what you have written surely resonates with us as well. We have only begun our journey, and I am grateful to have found you here.
I just read your 11 things you have learned… article. I am a Canadian parent of a seven year old who was “unofficially” diagnosed on the autistic spectrum by a paediatric neurologist back when he was about 4 though he had been in speech therapy and OT since he was 3. I can relate all too well to what you have written. In fact, your experiences greatly remind me of where I was at when our son was younger.
I live in Cape Town, South Africa and have spent a great deal of money on therapies and our son is at a remedial school here, that accepts kids who are “mild” (though there is nothing mild about his behaviours) and our son successfully completed kindergarten and is on to grade one. He only used single words when he was 3. His speech is still delayed but he continues to make steady progress. He now uses sentences and can express himself fairly well (all too well sometimes).
I urge you to focus on what your son CAN do. There is no game plan here. There is indeed a mourning period that a parent revisits on and off thru special moments in childhood like birthdays and Christmasses. It is indeed hard.
However, if your son is continually progressing through therapies, that is good news. He is on his own journey and while I sometimes worry about where our son will end up one day, I remind myself that this is beyond my control. All I can do is help him obtaining the help he needs, love him unconditionally and believe in him.
And do try to do a date night once or twice a month – keep your marriage happy – after the strain ours has taken – it is critical you have time to be the couple you began as.
Keeping yourself and your marriage healthy and happy can only benefit your child as he will see a happy mommy.
This is fantastic. My brother is special needs (though it was far harder to deal with when he was younger) and my mom could have totally used a list like this as a reminder that she wasn’t going crazy! I actually wrote a story about it (albeit very lighthearted, but you might enjoy) – http://growingupginge.wordpress.com/2011/12/15/a-special-education-2/
Hope you had a great holiday and happy new year!
These are all great, but #8 is my favourite because I think doctors do not realise this. The rule of thumb is always to trust a parent’s gut.
What great insights! I may borrow a few of these gems. I especially love the people will surprise you one – sometimes it is the acquaintances who make the biggest impact in hard times.
After reading your story, I decided to come back and let you know there is a petition link on my site concerning a 9 year old with autism. It may prove beneficial in protecting all children in school. If you are interested in supporting them, anyone can sign it online. I know they would appreciate all the help they can get and would love it if you and your readers would consider re-blogging it. It will be okay if anyone wants to copy and paste what I have.
It is really a sad and scary situation that should have been properly addressed when it happened, but unfortunately, the school feels as if they were giving proper punishment. It is everywhere in the online news if you would like more information. My link is http://wp.me/pWjlX-3H
I pray they win this battle. It breaks my heart to know people can be so cruel.
I read the petition, and I will be researching it a bit on the internet like you suggested.
Thanks for sharing.
You are so welcome. I cannot stand the thought of things like this happening to our beautiful children.
I love your insight and clarity.
My heart goes out to you. I can only imagine what it is like to raise a child with special needs. I don’t care what anyone else says… you are a wonderful person in my book. ❤
I don’t speak of it much, but I am still learning every single day!
Thank you for posting this! Your child is so lucky to have a parent who is in tune and supportive. I’m a preschool teacher, and my nephew has Asperger’s. It is amazing the support that you do get from people when you least expect it. Keep on keeping on!
Thanks, Jan. And what a lucky little boy to have a preschool teacher for an aunt. I am sure you are a big help to his parents. Best wishes!
Good post! I am not a special needs parent but I can relate on so many levals as an adult with CP. I wish my mother had the insight and help you have. Spmetimes people can be crul but they can also surprise you in ways you never expect-I know, I’ve been in both places. The best to you.
I’m not a special needs parent but I do have a niece that is Autistic. I find that that turning her favorite things into a learning experience can be quite rewarding. Also, just giving them a hug and telling them that you love them can go a long ways.
Although I am not a special needs mother. I am however a special needs big sister. And to be honest I have not noticed much of a difference between the two. My baby brother has Aspbergers and I find that I have a lot more respect given and am a lot more in tuned with him. And this has completely changed me as a person! I am a lot more, kind, accepting, knowledgeable, less judgmental, strong, aware. I am a University student and I would love to one day go into teaching and open up a new world of possibilities towards special needs children. I have seen too many struggles for my brother and even others in my classes growing up, and something needs to be done!
Keep up the battle! You’re doing a great job!
Great post. I, too, have learned these things. As for number 8, this one was actually given to me by a cardiologist early in my travels through the world of disabilities. He told me never to be intimidated by a doctor, “They may know medicine, but you know your child!” Being the daughter of a doctor, I needed to hear this. I have learned it is not only OK to say no to a doctor but it is sometime necessary to walk away from one. And I have also found that a doctor who respects a mother’s intuition is a priceless treasure.
These words are true for any difficult long term situation.
There is always at least one positive thing that happened today amidst all the negatives. If you focus on the positive thing, the day won’t seem quite so awful. Great blog!
Thanks for sharing, we all have special needs, just that some are more obvious than others ( emotional, physical,spiritual or mental). May we learn to cope like you.
Bless your heart. I work in a field that every now and then I meet parents who are in a similar situation. I always ask myself,”Can I do it if its me?” Words probably can not describe the things you and your family went through. The list you gave came from a person who loved so much for her child that she would do anything and everything. And yes, it is frustrating when people don’t understand or are worse insensitive. Wishing you and your family all life’s blessings. you are a true inspiration….God bless you always for being a light for others ….
My six year old son has autism. You hit the nail on the head on every one of these. Thank you for the good read.
I recently sat next to a women with her small autist son for a 9 hour flight. The women got understandably frustrated at times. I really wanted to turn to her and tell her what a wonderful job she was doing and how lovely her son was. I know that I could never handle a situation with as much grace as this women did. I didn’t however because I felt like this would be patronising and how could I even make a comment when I don’t have a clue. But if she is out there reading this, your son is beautiful and your a fantastic mother.
Hello,
My husband and I adopted a little boy with Fragile X Syndrome. I not only instantly became a parent but had to become an expert in special education and special needs. I made a lot of mistakes at first, but after time I learned to navigate the system and took a job as a professional advocate for the disability community and special needs children in particular. I was shocked to learn how widespread discrimination against our children was. I accompanied other parents to their IEP meetings, to ‘manifestation determinations’ and evaluation meetings. I even attended a ‘due process hearing’ with one mother, trying to get her child an education.
I’m so glad to see this site. Glad to see you talking about parenting a child with special needs. Parents, in my experience, get most of their information about the system through word of mouth from other parents. We are our best resource, we are our children’s voices.
Thanks again!
Definitively agree with your list. I have Asperger’s syndrome and did some of those things while growing up.
Wow, thank you for sharing that in such an honest, well written post. I do not have a special needs child but have had the pleasure and challenge to work with many special needs children over the years. While I cannot relate to the daily challenge of parenting a child with special needs, I was able to relate to the universal truths and hardships of parenting full stop. What particularly resonated with me is that you wrote about the people you thought would step-up and could count on being surpassed by those that you never thought would. Yes, people suprise you in all situations. I was touched by everything you wrote, as both a parent and an educator.
So glad I found this through “Freshly Pressed.” I want to be more aware, more educated, more sensitive about special needs kids, and I’m taking in your words. Thank you for opening up your heart to all of us out here!
couldn’t agree more. Having worked in the health system, I thought I had a pretty good understanding of how the system worked, until I needed to work it for my son, who has auditory processing disorder. Number 9 cannot be overstated! I pity the children who don’t have pushy parents demanding the services they need. I wrote about my experiences here http://wp.me/p1GAv4-s0
this is a good thing to read.
Thank you. Posting on my Facebook page, but will use it eventually as the basis of a blog post.
When I was in graduate school it was thought Ice Box mothers created autism, so there has been some progress.
Sadly, the current media continues to bash parents and one has to become a parent to begin to get it, but one also has to parent a challenging child to step out of the blame box and get in to the real life game of doing all you can. Becoming a foster parent taught me more than graduate school, although I have also found some professional advice helpful.
Stay strong. will let you know when I use this as a blog post.
I have several nieces and nephews with special needs- two with Down syndrome, two with autism, one in a wheel chair fed with a G-tube, one with fetal alcohol syndrome. I always counted it a privilege for my own children to grow up to be comfortable with cousins so different from themselves. They’ve learned from their cousins to appreciate people for who they are, and not be put off by their challenges. They’ve learned to look beyond the tics, the speech impediments and the aparatus to find the person within. They’ve learned that you don’t have to look or act like everyone else to have value and deserve kindness, dignity and love. We can all use a little more of that.
*inspired*
Thank you so much for sharing these lessons! I think many parents can identify with the idea of the internet being both a blessing on the curse. While Google can provide helpful information, sometimes the information overload that occurs is more harmful than beneficial.
Thank yo so much for sharing this. Very insightful. May God bless you and give you wisdom and strength. Connie
http://7thandvine.wordpress.com/
Love this! I am an ABA therapist and couldn’t ask to be part of a more rewarding career. The kids make my day (sometimes make it crazy and chaotic but mostly make it worthwhile 😉 ) One of the parents I know started ITAALK. Check it out sometime! She has been able to give kiddos ipads to help them learn and it’s all free! We will be attending surfers for autism this summer in Florida…can’t wait! Keep up the hard work of being a parent! You were given your child because you are the only one who can be the best mommy!
Children with autism leave footprints on your heart!
Reading this brought back a lot of memories. I am now toward the end of the transition to independence phase, and that is the main theme of my blog, although blogs like this will probably inspire me to write about some of those earlier days. I had three kids in special education from prekindegarten on starting in 1992. We got an autism diagnosis in 1995. My older two are receiving transition services in their efforts to enter the working world (after each has received a college degree this year). My youngest one has eschewed all types of help is attempting to make it on her own. She is in her second year of college.
My kids’ piano teacher said to me once, as we were leaving, “How do you stand it?” (She meant the constant talking). I said, “I do it day by day,” Not an original thought to be sure, but that is how you do it.
Thanks for the post. It gave me things to think about. I am a guy with a big heart and a little too self-centered. I don’t always see what’s going on around me. Children are wonderful but I forget about the parents. Thanks again.
What a beautifully written piece. I have worked with kids with significant special needs for the last 4.5 years as a paraprofessional and taught preschool before that. I received my Master’s in Special Ed. nearly 2 years ago and have been trying to find a job since then. I will be starting in January as a teacher of Mild/Moderate Needs High School Students, but my heart will always be with the kids with the significant needs.
It is so hard to be an educator of kids with special needs. There are so many things that you are responsible for and so many different things that are required. It is, I imagine, easy to lose touch with the parents in the process. And communication is essential to both parents and teachers.
I’ve always wondered about the parents who give me no indication that they have read what I have written in their child’s communication book (for those kids who are non-verbal). Was it a rough night? What did their child do? I’ve always wanted to know more about their child so that I could try to connect with them. It is frustrating when parents don’t take the time (over the long-term) to reply. I realize that life with a special needs child is crazy: I can’t imagine how difficult things are, but responding is important. Without it, I don’t know what your child’s favorite food is or if you have any family pets. It makes it difficult for me to help your child manage with his peers or use his communication device.
Thank you so much for writing this blog. I know that your life is busy, but the information is SO important for parents and educators.
i don’t have a special needs child and i still think parenting is difficult…have had an opportunity to work with special needs children and am always humbled by the patience and commitment they show towards their children.. it helps me draw inspiration to be a better parent myself.. Things are even more difficult in poor countries like India where not much specialized help is available specially for the economically weaker sections and people living in small cities or rural areas. No schools that cater to these children, no parents groups, no specialized doctors or physiotherapists and trainers.. just surviving becomes a challenge! Wish there was a way to connect them with voices like yours, then at least they would know they are not alone..
6, 8, and 9 definitely ring true in my house with my special needs kid. Thanks for the post!
I have to say that after reading your blog post I found myself talking out loud to myself with a nod and a “Yep,” You are so very right.
I became the mother of a special needs child in June of 2005. My son Dominic was whisked away and diagnosed as having Down Syndrome moments after birth.
Being thrust into the unknown was a scary experience and looking back, I wish I would have known then, what I know now. I probably would have enjoyed by son a lot more as an infant.
I was both surprised and disapointed by the reactions of close personal friends and aquaintances and you were right, I was amazed where my support came from and where it didn’t.
I think my biggest struggle also, in the beginning, was dealing with medical professionals. I eventually allowed myself to realize that the doctors/specialists don’t know everything and in some cases, I know more than they do when it comes to the issues with my son.
My very wise uncle had spent the past 27 years of his life with two daughters with Cystic Firbosis. He sat me down and had a conversation with me about advocating for my son and “managing” medical professionals when I felt intimidated. He said “It doesn’t matter if they graduated first or last in medical school, they are still called doctor,”
That’s absolutely true. My best friend is a family practitioner in the northeast. She readily admits that she has to reference developmental milestones, as that isn’t something doctors spend much time on in medical school. She has stated that she would feel uncomfortable making the diagnosis – yet comfortable enough to order screening. My friend Christy went to a highly regarded neurologist at Nemours and he was humble and honest enough to admit that he was unfamiliar with some new symptoms her son was having. I find many doctors quite willing to say they don’t know, but are happy to find out. I think rather than fight it out, it makes sense to just move on up the specialty scale. No doctor can be expert about everything, no matter how good they are at what they do.
Thanks for sharing.
And to clarify, yes, I do know that specialists are not an option for some people. No matter your politics, I think almost everyone is in agreement that healthcare currently stinks.
I”ve learned how much of an impression my daughter has made on others. When my husband, a full time parent goes to the market alone, people will ask where she is.
I’ve learned that we have to be her voice.
I’ve learned that joy and sorrow are inexpicably inter-twined.
I’ve learned that we have met some ofthe most incredible people on this earthe and we would have never met them if it wasn’t for her.
Congratulations on being Freshly Pressed! It’s how I found your post!
All three of my children are ADHD. My second is Aspie as am I and my third has a form of Autism we can seem to pin down, as well as Fetal Valporate Syndrome, a condition that came from too much seizure medication that my doctor sad was ok to take while pregnant. I know that feeling of “well at least you don’t have it as bad as some.” It doesn’t always feel that way. When I can’t stand to be hugged by my children because sensory overload makes me want to scream, when my youngest is smashing his head into the wall for unknown reasons I think it can’t be worse than this. But I have learned the upside is when non verbal Mr. Aspie says “Grandma, what are you doing?” or the equally non verbal five year old says “look at the lights!”, you want to scream for joy because these are the best moments, these are the moments you hold onto and forget the rest.
Just found your blog. I have learned that my older HFA son has changed, things have changed and I have changed in the past 11 years (he is 12 but I knew something was up when he was 11 months old). Grant is in 6th grade and middle school has been such a blessing even with the “normal” worry of leaping from elementary to middle school. There is no denying he is “different” and needs help to function in a classroom with peers not on the spectrum.
My younger son who is now 7 was NONVERBAL until over age 3, he now talks, though still in speech. He did stop flapping, and stimming around age 5 rarely does it now. He is gifted as well, which I knew when he was taking letter magnets and spelling CVC and 4 letter words at age 2! Still has sensory, fine motor issues but he has learned to cope, we dropped school and private OT. His only real issue besides speech is oral sensory issues and he is a problem eater.
I have learned to advocate for my boys and even hired an advocate last year when older son was in 5th grade. I could not let his IEP stand-he is behind many grade levels academically and it needed to be documented. I was getting the run around on my own from 2nd grade until 5th. Like I found on writeslaw- #s do not lie!!! Testing is key, and sometimes IEEs are necessary.
Great post. When I was reading it I was reflecting on my own Aspie teen and how hard it has been and is to get her the help she needs. Your blog put it very well. I, too, have had to work on #9 as I am naturally a shy, non assertive person. However, since the birth of my daughter and the discovering, just a few years ago that she has Autism, my and her world has turned around majorly. I have discovered strengths within myself and within my wonderful daughter that I never knew, never saw before. I have cried in frustration in my home, or car when I once again find that another form needs to be filled out, another counselor needs to be contacted or once again I have to contact the principal of my daughter’s school about the need to follow the 504 plan we have put together.
After all we go through for the love of our children we parents should be known as Special Parents of Special Children.
The Peace Corp stole what should have been our motto: “The Toughest Job You’ll Ever Love”, didn’t they?
What a wonderful post! I teach Exceptional Services at a Title 1 school, and it’s always nice to see parents that are really involved in their child’s education. Keep on being assertive!
arbohl.wordpress.com
Thank you. And, being a teacher myself, I especially want to thank you for what you do. It’s a hard, sometimes thankless job. 🙂
I absolutely love this post. Our daughter was just diagnosed with autism. It truly changes everything, and you said it all so perfectly. I even called my husband over to read it. Well done!
Thanks so much. I hope you’ll come back to visit and share. I am hoping to hear from more people who are right where I am now.
Came across this. Think it’s a brilliant post. I work with children who have special needs, and I think sometimes we as workers forget how hard it can be to be a parent and how easy it is to judge. Wish you all the best 🙂
Yes. I no longer judge screaming children in the grocery store. You have no idea what their parents might be dealing with.
That’s a lot of comments and I skipped them all, LOL.
Just wanna say that….only you know EXACTLY what it is like. And I think the best thing would be that you find someone who can listen to what you have to say. Sometimes a listener is all we need.
You know, you just made me realize I forgot #12. It does make you realize that you don’t want someone to tell you how to fix it, you just want them to listen.
Great Blog! That is what everyone goes through I would think. This should almost be the 11 “commandments” to accepting a special needs diagnosis. When I read number 5 I was hoping it was a general statement. I’m sure you don’t let anyone silence you, as once we accepted the diagnosis and went through everything, it was something we were actually proud of because of the way it changed all of us. We don’t use our son’s diagnosis as an excuse, or to get attention, but we never let anyone try to silence us about it. Thanks for sharing.
K.S.- Saco, Maine
Being a direct relation to five lawyers and judges, I’ve never been one to give up an argument. lol But sometimes the answers aren’t clear cut, which makes those who try to minimize it harder to deal with.
Thanks for sharing. Hope to see you again.
Your wisdom and honesty are refreshing. You have my respect and admiration for succeeding where so many have failed.
Very true. Ive learned to come right out and tell the people who tell me “he will be just fine, he will catch up till hes older” that it may not happen that way. We dont go to parties because its stressful for BOTH of us. And number 9 is the big one, I never thought I could be this strong but everyone knows Im not afraid to speak up for my child and his needs.
oh and to add, it can be hard for people to understand a 8 year old who isnt quite potty trained yet. Thanks
My child would be dry for several months then wake up back at square one many times. Finally one day it just clicked and he has been dry from that day on. That was around age 7-8.
I agree about the parties. We avoid them unless they are here at the house on his request. Then it is mainly adults. Works best that way.
He did wake up a couple of days ago and decided he was going to build a rocket ship and go to the moon. That is where we are at now. Trying to convince him he is not going to actually be able to go to the moon.
Everyday is a new beginning. I love him and would be so incomplete if he was not in my life.
It is emotionally exhausting to try to correct those folks. They mean well, but they don’t understand how frustrating it is to have to take the time to correct their assumptions.
Thanks for sharing.
I know couple of special need parents. It needs lot of patience and dedication to see the child learn simple basic things. The satisfaction they derive out of this effort is priceless. Know a mom who quit her professional career to be a full time caregiver for her special need child.
I sure wish I could do the same. It would be wonderful to be able to do that.
Thanks for stopping by and sharing.
Nicely said! I plan on putting a link back to your post on my site. You might also be interested in checking out some of the special needs and autism spectrum articles on my site.
Blessings,
Delana
http://theeducationcafe.wordpress.com/?s=asperger
Will do. Thanks!
P.S. I’m working on a page of links. I’ll include yours. Good info on your site.
Great post, touching and informative.
Thank you so much for reading and taking the time to reply. 🙂
As someone who has been a friend to parents with special needs children I have to say that I have been really thankful for the time I have spent with them (the kids and the parents). I wouldn’t trade it for the world. Cheers.
I bet those friends really appreciate you, asoulwalker. Friends like that are rare indeed.
my son has tantrums and thinks I will hate him because he is angry. He used to think that when I got mad it meant I hated him.. once I figured out why he was withdrawing I started telling him “I love you even when I
am angry” then as he got older I changed it to “I love you even when you are angry”
believe it or not for a child having trouble understanding his own emotions let alone mine it really makes a difference.
I never thought about it, but that makes sense. That’s a good thing to remember. Thanks for sharing.
My biggest struggle and greatest accomplishment as the mother of a child with autism is finding the balance between too much and too little acceptance. I want my child to have the tools he needs to experience joy, friendship, family and a sense of accomplishment in a profession he cares about. That means lots of therapy. I also want him to know I love and accept him unconditionaly. Learning to accept him for who he is while pushing him to develop skills that don’t come naturally to him is a struggle but well worth the effort. I have learned that accepting who he is at his core and never trying to change that is the key to helping him develop those skills without making him feel he is lacking in some way as an individual. I never want him to feel we pushed him because we didn’t think he was good enough as he is but because we know how very worthy he is. The balance between the two resides in that sweet spot where we encourage him to try then show him how proud we are of whatever he accomplishes regardless of how much or little that may resemble a neurotypical response.
Alicia, that was beautiful. I have a draft in progress that I keep avoiding which is similar to this in spirit – that struggle to appreciate him yet also want more for him.
Thanks for such an insightful response.
The main thing I have learned on this wonderful world of not knowing is:
1) Everyday is a new beginning. You never know what it will turn up or how it will turn out.
2) Always treasure the little things. You may never get them again.
3) Always be thankful for the time you have together. Live is way to short not to.
4) No matter what people might think they are human and have feelings too. Kids can be so cruel to them. You will have to be the one that sets a positive display for others to follow.
5) Not everyone likes the hugs your little one may want to give.
6) 5 seconds of anything can become a habbit, so if it is a behavior you do not want to be repeated over and over again then you might want to stop it very quickly.
7) My life would not be complete if JD was not in it. He brings me such pleasure in the little things he does. That smile, the I LOVE YOU MOMMY being said, the hugs when he wants to give them, the love he shows and the everything else about him.
8) I love him just for being himself.
9) And yes I have learned that even the people you trust can be very mean to your child, If you do not stand up for them NO ONE and I mean NO ONE will.
10) Also IEP’s are a huge pain in the brain.
11) And yes people will give you dirty looks when out in public. To the point of following you around in the store with hate glares. Our skin grows thicker the longer we deal with it.
These are some of the things I have learned in the past in the past.
Those are great ones! And I’m glad to hear that my skin will get thicker. That’s a hard one to get over…
Thanks for sharing.
It is still very hard to tolerate people like that but we learn that some people will always be rude, hateful, insensitive and ugly. I thought about getting some shirts that say “Yes my son is different. He is spending a life time dealing with the effects of AUTISM. He did not ask for this life, God gave it to him because he is special.” I do tell this to people from time to time and you know what? They turn around and leave you alone.
I am so glad you started blogging!!!! I have been avoiding the Internet more the last two weeks because too many things have broken my heart, but I want you to know that your posts always make me smile and you give me hope that someone sees into my heart. God Bless You!
I think I’m going to print this out and hang it up when I have writer’s block. Thank you for those kind words. 🙂
Thank you. My youngest daughter is almost 3 and for the past two years we have struggled through the diagnosis process, knowing something wasn’t right, but not what. Since her diagnosis with autism and developmental delays in July, there has been an overwhelming amount of information and a confusing process of decisions. Thank you for this blog. I could have written a lot of it and it is so nice to know I am not alone.
No, you aren’t alone, Cyndi. Please keep in touch. Our son is also almost 3, so it sounds like we may have a few things in common. 🙂
I have learned that it is ok to tell people where they can go, and exactly how to get there. Be they school officials, or family; when they decide they know better for my child then I do.
I have learned to not lose it, or roll my eyes when someone tells me how very strong I am and that they just don’t know how I do it…Like there was every a choice, we have no choice we just have to be…
I have also learned, how lonely it can be. When friends and family don’t understand why we can’t go some places, or drop everything and go join them. LIke when they don’t understand, that a vacation some place new with your child is not really a vacation for the parents. You spend the entire time on alert for new dangers and situation, and then want to scream when you are told to just relax.
I have learned that a few good friends who take the time to get to really know what you child needs, can be a godsend.
Lastly, I have learned to be grateful for every second of everyday.
Isn’t that the truth about vacations! It is a hard thing to explain to people who haven’t experienced it.
I do have good friends who love our son. And I am blessed that they have wonderful daughters who are great babysitters as well. 🙂
ThiS is so true…all of these relate to me but. #7 is soo true in my life that’s all raegan willveat
Thanks for reading and sharing.:)
Thank you for putting into words what my heart already knew!
But I want to tell the world that parenting my daughter has made me a better person. She has made me who I am today. I am so blessed.
I forget who said, “The true measure of a man is how he treats someone who can do nothing for him in return.” These kids DO change your heart in many ways.
Wow, what a great post! Although I do not have any autistic loved ones myself, I can see your list applying to having a loved one that requires more attention/care for most any reason…. so applicable and authentic.
5. Well-intentioned people will silence you and add to your frustration. – well said… and good for you on creating such a vibrant and involved blog community! A place you can seek support when you want, or walk away for a time when you need…
Be well and best of luck with the Christmas and New Years festivities.
My friend Lynda pointed that out to me once – how she feels she can somewhat imagine it, now having to take care of her husband with Alzheimer’s. She tried to apologize for being presumptuous – which she certainly didn’t need to. You’re right. It applies to a lot of tough things.
I just learned more about what’s inside my sister-in-laws heart! As a mother to an autistic boy, she shared your post on her facebook-wall, and as her sons aunt I looked in to read it. Your post touched my heart. Thank you!
Thank YOU. You are the kind of sister-in-law we need. Treat her to lunch and a pedicure. She needs it. 🙂
Thank you! It’s just like that !!
Funny how one shared experience sometimes allows us to see into the minds and hearts of others, isn’t it?
I’ve learned it’s ok to cry. I spent a lot of time feeling guilty because I mourned the loss of the son I thought I had. I would be told “he’s still here, he’s still the same boy as before the diagnosis” but I couldn’t stop feeling the crushing weight of that sadness and guilt. So the biggest thing I’ve learned is that it is ok feel that you lost something and to feel sad about it, to cry and mourn because without experiencing those feelings you’ll never accept things as they are and make room for new dreams for your child. Now that we’ve traveled that part of the journey we are able to celebrate him for who he is and truly see the amazing things he brings to everyone who loves him.
You are right about that. It is okay to acknowledge your own grief. For me, I worry so much more about what HE might lose out on.
Ultimately, we just want our babies to be happy. But you can’t focus on their needs until you take care of your own. Kind of like the oxygen masks that drop down on airplanes.
Great list. I’ve noticed all these, but the one that has continued to surprise me the most is how much it hurts when well-intentioned people brush off my son’s autism as not-a-big-deal. It is so life-changing in every way- you no longer are very close with some of your closest friends, but you get to meet and grow very close to new people who DO understand what you’re going through.
Sounds like you are doing a great job as a special needs parent! 🙂
Thanks, Christy! I’m trying. Good thing I have the advice and support of this community.
Wonderful post. Wondering if you have tried Floortime (DIR method)? I’ve seen some amazing results with it and it is something YOU can do–you don’t NEED a professional (although we are very helpful, as we do this for a living).
No, but I’ve put the book on the subject on my reading list.
Thanks for the suggestion!
Two things I’ve learned since my son was born….that I have tons of patience…and that Holidays isn’t so bad after all ! I can’t wait for Christmas just to look at my boy’s face when he opens his so desired christmas gift…that face is just out of this world !
I hope we get that joyful little face this year, Mercia. He doesn’t play with much, so it’s guesswork. Santa told me he is bringing him an indoor trampoline that I’m hoping is a big hit.
I shared this on Facebook and I got hit with #5. My SIL wrote something about all kids having special needs.
Thank you so much for writing this. It is a comfort to know someone understand.
You could respond back with, “Uh, did you read #5?” 🙂
Thanks so much for reading and sharing.
Great post. Have experienced every single item at some point with regard to our youngest (he has autism). I have learned that at the end of the day I have to continuously place my family’s own needs above the opinions of others. I gave up on trying to explain myself to others a long time ago. Unless you are there you just cannot understand. I don’t say that in a mean-spirited way. it’s just the reality of the experience. Appreciate and enjoy your blogs. Keep up the good work.
Thanks so much. The lesson you have learned isn’t one of the easiest ones for sure.
Once again, I think you are spot on. I’ve learned that imperfection can be perfect and I’ve learned to trust my intuition as a mother. I have also learned how many people want to help and support me and my family when challenges arise. I feel more and more blessed each day.
That’s wonderful that you have found such support, Jodi. I, too, feel blessed to have wonderful friends and family. And I’m very lucky to have a husband who adores our kids for who they are. I can’t imagine having to do this alone, though I know there are plenty of folks out there who must.
Thanks again.
Wow, our special needs are different, but you sure hit the nail on the head! Every single one of these things you have mentioned, are things that I too have learned throughout our journey! Thank you for putting it into words and sharing! One other thing that I have learned is that there is someone who knows so much more than we do who is in charge of this life. I am so thankful for a Father in Heaven who knows my children personally and helps me have the strength I need to make it through every day (and night!) Thank you again for sharing!
Thanks, Tammy. I’m glad your faith helps to keep you strong. Best wishes to you and your family. 🙂
My top thing would have to be; ” I do NOT wish there was a miracle cure”. While there are certainly times I wish my daughter didn’t have to experience certain things associated with PM-S & Autism, I could not imagine our life otherwise. I remember early in this journey how I would reach for each & every little glimmer of a “cure”. But after 22 years I realize that we both would be such totally different people…I love her just as she is, she has made me who I am.
That’s a hard one to reach when you are worried about how your baby will be treated by the world, isn’t it? Good for you that you figured this one out. 🙂
The things I learned have been described in an essay I wrote in June. Please check it out.,……I plan to share this post on my “What I Would tell You” Facebook Page. What I learned can be found here: http://www.whatiwouldtellyou.com
Julie
Mom to Meredith
I will check that out. Thanks, Julie!
I read Julie’s post, and it is very powerful and beautiful!
It is wonderfuly encouraging to learn that so many parents feel the way i do. My autistic son is the most delightful person i have ever known. All 11 things learned are so true. He has been bounced around from school to school 4 times, he’s in the 3rd grade and is now back at the 1st school he started at. Stay strong, keep learning.
Thanks, Ian. I hope your little boy is able to stay in the same school for a while.
You hit all my feelings right on the nose. The guilt, love, frustration and anger. Glad I am not the only one who feels this way.
You just made a lot of special-needs parents smile by saying that. All we want is for the people who work with our children to see the wonderful people inside.
That’s another thing I’ve learned in the past few weeks – we are not alone. It astounds me the number of people who feel the same way.
Thanks for sharing.
This is all so true I’m not a mom but work with children with special needs an the one thing we must always remember is that your children have such amazing gifts and talents, many times they can teach us things if we allow them.
I have learned to be a better sibling, and a better person because of my brother’s challenges . I have learned the importance of tolerance, and how simply being nice to the kid who is “different” can make the world of difference to them.
Bridget, you just made a lot of parents here smile with this comment. I know your family and your brother are very proud of you. Thanks so much for sharing.
Nice to see another sibling here! Hello 😀
After reading this, I felt like you were reading my mind. Thank you for opening your heart to others. It’s bitter sweet to know that I’m not alone.
Thanks, Cathy. It’s a relief to know that other people’s minds are in the same place.
Wow that says it all …. Stuck for words and
thats a first … Thankyou ..
Thank you Marcella. 🙂
My little boy is almost 20, now, and over time the feelings of grief and helplessness lessened, to the point that now I just enjoy him for who he is. I have regrets, things I should have done differently- but this is what I’ve learned: to trust my instincts about what he needs. My biggest regret is that I deferred to people I believed were more knowledgable than I, and I was most often instinctively taking the right approach. Theories and treatments come and go..don’t get too invested. if it doesn’t work, move on. If you don’t feel good about it, don’t do it. If no ones listening, just keep talking . Don’t let anyone tell what your child will ultimately be capable of, because nobody knows.
Thanks for sharing your story. It is nice to hear from people who have been where I am going. 🙂
I think this is an excellent post and wanted to add that some of these things can be applied to women who become adoptive moms; particularly transracial adoptive moms. 🙂
I never thought about that. Excellent point. Thanks!
I’d like to add a few more…
– finding allies in the most unusual places
– making the most of opportunities that come along
– making sure you see your child as a person first and not defined by their disabilities
Excellent lessons! Thanks for sharing.
The most important thing I have learned with my daughter is that she is a child with special needs not a special needs child!! She is first and foremost a child the disability is always second sometimes third 🙂
The more kids I work with, the more I realize how true this is. Every single child I have known with ASD is completely different from the others.
Thank you for this excellent post, I relate to all of them! Our little gal has a rare chromosomal duplication, with no other reported cases.. so we really are in unknown territory. But I like that because it means she truly is blazing her own trail. 🙂
Thanks Daria. Best wishes to your family. I hope you guys get good answers soon.
I agree with so many of these posts! You never grow up thinking that you will one day have a child with special needs. It just happens, for whatever reason, and you can make a choice to let it destroy you or make you the best darn parent possible. I am SO in love with both of my children. My 11 1/2 year old daughter was born with Cerebral palsy and she is amazing…smart, funny, beautiful, snuggler, loving…..I couldn’t love her more if I try. I am grateful for the “little” joys everyday. We were baking on Saturday. Madison was in her walker, with braces on her legs, standing tall with a table in front of her. I pulled out the dough and it was very hard. She said, “put it in the black thing…you know, the microwave!” I asked her why I should put it in the microwave and she said, “to make it soft, you know, like clay!” I just thought that was brilliant!! THen she commented on how the packed brown sugar looked like beautiful sand!! I LOVE that stuff!!! God is good, ALL the time and will help us thru when we let Him!!!
Madison sounds like a joy of a girl. She’s a lucky girl to have such an awesome mom as well.
Great post. I enjoyed it!
Thanks so much!
WOW
WOW
WOW
I get each and every single one!
I think I can write a blog post on every one too.
Maybe I’ll revisit them when I’m having bloggers block. lol
Thankss, Lisa!
#9 has been so true for me!
That one is hard for me too. I realized just last month at the transitional meeting from Early Steps to public school. The ES coordinator asked me which therapies I’d be willing to drop due to their funding problems. And I get that. I do. You can’t get money out of thin air. All I could say to her was, “Please understand my position. This is my baby. And I want everything. I can’t say less is okay. This is the only position I can take.”
This is a wonderful post! Glad I found you all!
Thanks so much. I’m glad you found me too. Please stop by again. 🙂
I have never read anything so true and written for me. Lump in my throat started at No 4.. and the tears flowed at No 6. Thank you for this. It’s a great comfort, ;-).
Thank you, Melanie. That means so much to hear you say that. It is just as comforting to be able to get this stuff out of my head and talk about it with people who understand.
What a blessing my special needs kids are to me, always so sweet and innocent. Even though my son is 18 I still get kisses and hugs, sweet child like drawings for the rest of my life.
That just gave me a big smile, Flowermom. There are rewards, aren’t there? Thanks for pointing out that they will always be there.
So true! Even now, when my brother is almost 16, I get kisses and hugs and the best paintings ever.
I must say , being the mom to one with DS and one with Aspergers – all the above are true ! But 11 Trumps them all ! I after all these years have learned who I can educate and those I can not ! And may I am wrong but unless you are a parent if special needs child or children …. Ppl just will never fully understand our actions or feelings on the way we look at things!
No, they really can’t. Just like there are things other people go through that we can’t understand. I’m still learning how to accept that and not expect the understanding that I want so much. Sharing with this community online helps.
These are so true. Thanks for sharing! I fall in love with your blog a little more every single day!
Oh, wow. Thanks so much. I fall more in love with blogging every day. It’s so therapeutic. I do worry I’ll run out of stuff to say though. I’d hate it to have only my grocery list to report! lol
I totally loved this post. What I have learned since my guy has come into my life is… I have alot more to give than I was aware. The more i give the more i want to and enjoy giving. I’m not talking money here it’s all about love and kindness.Not just to my child. Having Tristan in my life has somehow opened the Empathy flood gates ❤ I am a better person because of all the lessons he has taught.
Beautifully said, Kari. Thanks for sharing. 🙂
What a wonderfully written piece. I can definitely relate to most of it but especially nine, 10 and 11. I’m extremely shy and introverted but I have two little boys on the spectrum ages three and four. My four-year-old also has a rare syndrome. I don’t like conflict or fights at all. God has really helped me to get the services they needed somehow, someway. But it is hard.
Going against your own nature isn’t easy, is it?
Thanks for stopping by and for sharing. Best wishes to you and your precious boys!
Hi5!
Thank you!
My son is on the PDD end of the spectrum and in many ways seems “normal”, so it can be harder to get people to take his challenges seriously. I always knew I was called by God to be a parent, and now I understand why God put that so specifically in my heart… I need that affirmation to help me do my best and pour myself into him daily.
Amazing to hear. I know that I have met some of the most amazing people that I have grown to love because of my daughter and that our parenting is a reflection of God’s love.
We have felt the same way. Our son is somewhat atypical and I think likely to get a PDD-NOS diagnosis in March. (I could be wrong of course.) Because he does make eye contact and is more curious and affectionate than people expect, we hear a lot of “No, he’s not autistic.” People who spend more time with him see it, but it’s frustrating to try to explain it to people who don’t.
Lovely post. Mirrors what a lot of us think. Thanks for sharing.
Thanks for reading and commenting. 🙂
Last night she crawled into bed with us. She pushed me with her feet trying to make more room for herself. Last night…my non-verbal girl said “MOVE!” It was the best word I have ever heard in my life! 🙂
wonderful! it’s a strangely beautiful thing isn’t it!?
Love it!!
🙂 That’s awesome. And I bet you moved faster than anyone in history ever responded to a command! lol Congrats on that special moment.
Our son has been coming out with a few words recently, and I get that thrill.
These are all fabulous. The most valuable less in to me, and one I just learned after fighting it for three years, is that I cannot cure autism. Ted not being potty trained at five doesn’t make him MORE autistic; conversely, if I ever DO get him potty trIned, he won’t be LESS autistic.
Very true. Their skills may vary, but it is still autism. Thanks for reading!
I learned that I’m still learning
Isn’t that the truth? I’ll bet I have ten more to add this time next year.
so true. all of them!
Thanks. It helps to hear that others feel the same way.
Thank you for this piece!
Thank you for reading it!
In just a short while in your new “club”, you have learned a lot of really important lessons. Thank you once again for sharing them in the beautiful way that you do. While I know that it is helpful for you to share, you are providing a lot of parents with comfort that they are not alone in what they have experienced, what they observe and how they feel. These life lessons are bittersweet – some causing sadness and some causing extreme joy! What I have learned from my 18 year old daughter, Marlee, who has significant special needs and is medically fragile is that she was put on this earth to spread love to everyone she meets who is open to receiving. I don’t know a greater gift than that! My mother says that everyone who meets Marlee is better off because of what she gives/teaches them.
While I may be sad when I am confronted with her being different from her peers in a situation that I cannot avoid, what I do is try not to compare the apples (the “typical kids”) and the oranges (Marlee) and embrace and love Marlee for all her orange-y-ness.
Thanks so much for sharing!
XOXO Belinda
So amazing! I feel the same way about my daughter, Madison. She is so happy, always smiling (most of the time! haha) I have learned to stop and pick up the crayons and color with Madison because that is what she loves….I don’t torture myself anymore, trying to show up for all of the parties at the bouncy places,eventhough Maddie doesn’t want….YET. I have learned it is okay to respectfully decline and invitation and express my gratitude to the person for thinking of my daughter.
Thanks, Belinda. It really has been therapeutic for me to share my feelings with people who understand. I highly recommend blogging for people who are going through a tough time. Like you, we choose to take joy in our son. He is so loving and happy, how can we not? It does make the sad that not everyone gets to see him at his happiest — which he is always when he is home. It’s hard not to get caught up in worrying though. I think that’s why I’ve enjoyed this blog so much. I have a place to sort out my feelings — and then can go back to just loving him. Still working on that worrying thing though. Haven’t mastered that…. 🙂
Oh Honey….You will never master the worrying thing 🙂
You are an amazing lady and I I think it’s great that you are blogging. I look forward to what you write every day and I am in awe of both your insight and your honesty.
Hugs….
Belinda
I have learned that hugs can hurt, but there is still love in the heart.
Now you are making ME cry. Yes, they can hurt some of our kids. I’m so grateful that my boy’s touch aversion is mild and that I do get to love on him. But, as you say, there are other ways to love than hugs.
I have learned to enjoy my life, I don’t expect and am never dissappointed..so when there is a major accomplishment, zipping up a jacket, asking how my day was,knowing what the day/date/month is..small things to most but for me Happiness..I acccept my role as a parent..that is life…live it for all it’s worth
That’s an awesome reply, Yasmin. Thanks!
Love the site. Nie to feel I’m not alone and not crazy.
Thank you! No, you are not alone and not crazy. Unless all of us crazy, that is. 🙂
I have learned that hopes and dreams change with each step my children take. I have learned to let their lives be full of their hopes and dreams, not mine or someone elses. I have learned to listen, not just go “uh huh” when we are talking. I have learned that no matter what others say about my children, me or my family the only thing that matters is that we are happy with our lives and wouldn’t change a single thing.
Ditto …. Could not have said it better
Wow, a lot of parents with all “typical” children would benefit from these lessons. Thanks for sharing.
XOXO Belinda
Yes, you’re right. Good tips for all parents to remember.
That’s an important lesson too- learning to be flexible with your dreams.
Thanks for sharing.
Amen to that!
My sister is now 53 and has autism. I’ve learned a great deal going through her in her journey. One thing is that things get better…there is hope and amazing accomplishment yet to come. Writing is healing. When I wrote AT HOME IN THE LAND OF OZ: Autism, My SISTER and ME, the deepest places in me were healed. I learned then how to love my sister for the remarkable, unique, talented person she is. She is now living with a roomate, working part-time and she continues to reach and strive for her goals. I admire the hell out of her!
Anne, is that a post or a book? I’d be curious to check that out.
And I’m glad to hear of your sister’s accomplishments. She sounds like a special person.
This is beautiful and so true. Thank-you so much for sharing this. I am still pretty new to this world but am finding the hidden blessings amongst the challenges. 🙂
I’m new to it too, David’s Mom. These things I’ve “learned” are still a work in progress for me. I’m particularly bad at not driving myself crazy and getting stuck trying to predict where he will be.
I have learned that all of my hugs and kisses won’t cause certain pathways in her brain to connect, and that’s OK.
Sarah,
What a special lesson. You must be a very special mom.
XOXO Belinda
That’s a beautiful way of putting it, Sarah. And so true.
I love them all and agree. Number 9 is so true for me, a normally shy, introverted people-pleaser. I value as a blessing the way I have grown in self-confidence and courage because of the need to be the parent my son needs me to be, even if some (many) aspects of that don’t come naturally. I have found and mastered great quantities of information about my son’s special needs. I have led our team of doctors, specialists, therapists and educators because I have learned that I am the ONLY person who can put all the pieces together and make the best decisions for my son. I have advocated (and continue to) for him to state officials, doctors, educators, therapists, babysitters, family members and random strangers as necessary. I am grateful for the power and strength God has given me to do all of those things, and I am changed for the better.
Then I have a new role model in you, ylewis. I may have learned the necessity of that lesson, but I still need to practice it. It’s still a hard one for me. Not if someone is being rude, that I can confront. It’s when people are being nice and understanding and still not meeting his needs that it gets harder. I loathe confrontation. But, as we all know, I’ll be getting better at, right? lol
When you say it is hard when people are being nice and still not meeting your child’s needs it gets harder, really spoke the truth to me. I have an IEP meeting this afternoon and feel prompted to address this very issue. As the mother of a child with learning disabilities, I always fear this type of confrontation. I always worry that after I say something, the way my child is being treated could change. To me, that is just unbearable.
I know what you mean. I hate confrontation, too, and you are right that pleasant is harder to deal with than rude. I still have those moments after IEP meetings that I wish I had said something more strongly or insistently. I’m still learning, but I am amazed by how much stronger I am than when I started. You will be, too.
It is sad to think that parents view IEP meetings or any meetings with educators as “confrontations”. I am fortunate to work in special needs and I always want parents to feel we are on a team together not on opposite sides. I know that the system in which we work has severe limitations that we are also frustrated by. The “front-line” people are often the ones that have to tell parents that we cannot provide the services or care that their child deserves. We are not happy with that role or what the limitations imply for the child.
I know greater support and funding are things we also are trying everyday to advocate for. I hope that the parents of my students know that by speaking up for their child, they are not in any way alienating me or creating negative relationships between me and their child (or them).
On the flip side, as an educator, I have, on occasion, been treated as the enemy and spoken to harshly and unkindly. That being said, I try to view these discussions as parents coming at the situation with positive intent mixed with frustration.
Your post is wonderful and I hope that many people – parents and educators – read it in order to provide better understanding on all sides.
Paula,
I know what you mean. I, too, have been present in IEP meetings and been treated with hostility from the moment we sat down. It is frustrating, and it’s human nature to feel on the defensive when being attacked. Now that I have a slightly better clue where they are coming from (though we are just at the start of our journey), I don’t think I will feel it so personally.
And, I have also been witness to parents standing up for their child and not in any way did I feel negative toward them for doing so. Recently, I had to do the same when Early Steps was asking me to choose between therapies. My response was, “Please understand that there is only one position that I can take here. I want my baby to have EVERYTHING. I can’t take any other position than that.” She was actually quite nice about it and we worked out a solution that would fit. I think it helped that I first told her I understood the pressure she was under due to budget cuts. And there ARE pressures. Of course, most programs and schools want to help. Unfortunately, there are other factors at play. I’m going to try to remember that.
Thanks for sharing your thoughts.
As always a beautiful, sensitive & thought provoking post. I’ve learned that generally it gets easier, I got stronger, I learned to connect with my child on their terms and it’s so special. Also I learned that the things I once thought were non-negotiable sometimes are and that’s ok
I’m so glad to hear you say this. I’m looking forward to easier days. Though, I mus confess, there is one positive thing about developmental delays. They are still all too happy to love and snuggle. 🙂
I totally agree with LindaPaechter. Its only gotten easier. For me, the day I decided that therapy really was negotiable, that I could connect with my child on her own terms, that I could let HER interests and what SHE wants to learn trump what the therapists thought she needed to learn…THAT’s when all the rest became so much easier. The most liberating moment was when I realized the therapists aren’t experts on my child either, they are only experts on how she is delayed. They aren’t experts on how she is gifted (and she has profound disabilities but that doesn’t erase her gifts) or what she is passionate about. In the end, the most valuable lesson she has taught me is that ANY approach that starts with what someone CAN’T do is a false start. It would be a false and disempowering start to start with what I can’t do either. Starting with what she CAN do and what she WANTS to do has been endlessly empowering. Its also made birthday parties, Christmas and comparing her to other children pretty easy, because there are ways of how she approaches the world that come easily to her that all her typical peers struggle with.
❤
I’ve Learned Since Becoming a Special-Needs Parent that I am actually NOT an Alien at all, I’m just Autistic. And today, I learned how to use two apples to describe the workings of my Aspie brain in comparison to a NT brain, to relatives that only know the *ME* that imitates my Mom. Great family get together me thinks….hehehe
Great post my friend.
Love and hugs. xx 🙂
Nope, you’re no alien, Hippy. You are a mom uniquely suited to guide your unique kids!
i have learned that there is a little bit of ADHD in all of us as well as some other things that i mention inmy own blog post today 12/27 @ http://www.robinslp.wordpress.com