When I first realized that my son was on the spectrum, my good friend Christy, who has a special-needs child, took me out to lunch.  And she shared a lot of insight into what Sean (my husband) and I were facing in dealing with developmental delays in one’s child.   She talked about people staring, sadness, worry, IEPs, the ins and outs of our local school system, which therapists were excellent, which doctors were not, how to find a dentist who deals with special-needs children, and a lot more.  And then she looked me straight in the eye and stated the biggest truth of all, “It’s about ups and downs.  It’s a roller coaster.  And it seems to never stop.”

At the time, I thought I understood what she meant.  But that, of course, was before Callum began therapy.  That was before diagnostics, parent interviews, Early Steps, developmental pediatricians, and yearly developmental assessments.  That was before we experienced words gained and then lost.  And then found again.  It was before Callum showed progress in putting together a puzzle.  And before he subsequently refused to touch one again.  It was before he could point when asked to his daddy’s nose and eyes.  And before he stared blankly when asked to do so again.  It was before a lot of days and weeks when I have been convinced that things were going well.  And before the following days and weeks when despair threatened.

I have now been on that roller coaster for a year, and I have a much better idea of what Christy meant.   This particular roller coaster has lighting quick dips and turns.  I find myself looking around at folks who seem to be handling the ride better than me.  Special-needs moms who have actually used a bottle of nail polish in the past year and don’t have two-inch roots.  Moms who probably don’t get fussed at by the speech therapist because they are doing a better job at home working on their child’s abysmal joint attention.  Moms whose houses are clean and whose pastors have actually seen them more in church than in the grocery store.

I find myself thinking about the highs and lows as I lie here at 5 a.m., having been awake with the boy since midnight.  I have stewed about it for hours, feeling it a lot more in the witching hours of his sleep irregularities.  But then I look over, hearing Callum’s voice.  And I watch him in the light from the T.V. dancing across his face as he points to his eye and awkwardly says, “Eyeee.”  He touches his nose and says, “Nnnnose”.  And smiles at me and curls in to snuggle.

And the coaster begins to climb again.  I can see the climbs and drops behind me as I ascend again.  But Callum reaches to pull my fingers into his little hand.  And away we go.

22 responses »

  1. Holly says:

    Here you go. <> The ride is unlike anything you’ve ever experienced. There may be loops, dips and curves (even in the dark) that you don’t like or even anticipate, but you’ll get through them all in one piece. Your hair might be standing on end, but that is what brushes and ponytail holders are for! I’ve been on the rollercoaster for more than 13 years now and can attest to its wild ride. One thing you will consistently hear over the loudspeaker, though, is “Take care of yourself.” Easier said than done at times, but imperative. “If Mama ain’t happy, ain’t nobody happy,” goes the saying, and it really is true. You may feel you are in different roller coaster cars during your journey, but throughout it is important to take care of your mind, body and soul throughout this journey. If you can’t feed yourself with the things that you need, it becomes increasingly hard to do the same for your child and your family. No doubt in my mind that you are exactly the person your son needs sitting next to him on this roller coaster ride. Oh, and take that dramamine with a big glass of water.

  2. thequeen249 says:

    If it helps you any, us paras love them, even when your back is turned. We have the time and the drive to go that extra mile. We take our job serious and we become very attached to our kids and their families. That’s the opinion from a small town public school.

  3. Luckily for me my little guy has a bionic sense of smell and always tells me when he thinks I need a shower or I’m not sure I’d ever remember. 😉

  4. Darci says:

    I can relate too. We days where our son seems “normal”. Then the next he is not understanding things that he usually does, has a melt down before getting on the school bus, and wakes up many times during the night upset. Its sad for me, because i feel like I should be doing more. But I know I am doing what I can. He will be what he is, and we just have to do our best to help him get through the day.

    Thank you for sharing.

  5. Samantha says:

    Hi. I just wanted to say that I love your posts. U have a wonderful way of describing exactly what it is that us members of The Club go through and feel. Thanks.
    My daughter, who is 9, has a mosaic form of Angelman syndrome. She is a wonderful, loving child, buy I know all about sleepless nights, speech delays etc etc and the rollercoaster u wrote about this morning!!
    It’s been a tough journey so far, but also rewarding in so many ways.
    If u need any advice or just someone to talk to, please email me. Would love to chat.
    Lots of love and hugs, Sam
    Ps. Have u tried slow release melatonin for sleep? And get Callum checked for seizures. Focal seizures could be causing the blank periods and lack of sleep. xxxxxx

    • CatHerder says:

      Thanks for the great suggestions, Samantha. I am looking into the melatonin. I believe that he will be checked for seizures in March. He is supposed to get the full work up. His doc wanted him to reach age 3 first.

      I’ve been hearing a lot about Angelman syndrome, but I don’t know much about it. Do you have a website you recommend?

      And thanks for the offer of a good chat. I may take you up on it sometime. 🙂

  6. Randi says:

    Another mom in the waiting room at OT a couple of weeks ago commented on how “put together” I appear to be. I said, “Please! I just try not to throw my tantrums in public!” None of us are put together. And it does us all some good to be honest with each other about it. Isolation and feelings of failure or inferiority make this life infinitely harder! There is strength in our common weakness! Thanks for sharing.

    • CatHerder says:

      But how nice to have something think you look great enough to say it! People are walking up to me and asking, “Are you okay?” LOL.

      Thanks, Randi, for taking the time to share. 🙂

  7. Nicole R says:

    Beautifully said! My 6 year old..wait.. 7 year old (TODAY) was diagnosed at the age of 4, after 2 years of chaos. I often feel the same way. My fingernails are chipped, hair needs a touch up, bags under my eyes, and I can’t remember the last time I shopped for myself.. All of my friends ask me to go out all the time, (I’m only 27), but I stay home and wait for that little glimpse of “success” of all the occupational, social skills, and speech therapies. He is showing great signs of growth, and your little guy will too. Its a very long and often times depressing journey, but those little milestones outweigh the burdens 10 fold! 🙂

    • CatHerder says:

      Right now we are really happy with our son’s “communicative intent”. He goes into Callumland alright, but he is at a point where he attempts to communicate every time he wants something. Either through taking our hand, gesturing, and some “Pees?” These things cheer me up quite a bit, but I do also feel like you. I don’t want to miss out on seeing him do something. Which is exactly what happened on Thanksgiving. I turned my back and he told my father, “Bye bye shoes” upon being informed he couldn’t go outside until he put his shoes on. A two-word phrase! And I missed it… Grr….

  8. Angela F says:

    I very much relate to what you have written here. Please know that a special needs parent would never judge the cleanliness of your home. And if it appears that someone else is managing better than you – it is probably a figment of your imagination – honestly. I felt like a zombie for the first 4 years of my little ones life. If I had the time to clean I took a nap instead. I don’t recognize the reflection in my mirror – I used to have great hair. I live with a constant pony tail now but I do make time to get a massage once a month. It is a MUST that you take care of yourself. Figure out what is the best way to give yourself a little me time and put it on your calendar. You son needs you to be cared for too. And if anyone in your family asks you what you would like for Christmas ask for a house cleaning gift certificate or babysitting.

  9. ylewis says:

    Well said. One begins to long for some middle ground to catch a breath and just be, but those times are few and far between! As Lisa said, the struggles make the triumphs that much sweeter. I think it helps to view my child’s life with a long lense. I get so frenzied trying to give him every possible therapy and support to make a positive difference for him NOW, when I could do those same things with much less stress and desperation if I remembered that he and I (Lord willing) have time. Time for him to develop at his own pace, time for him to meet all of his goals, time to try for more joint attention tomorrow, time to clean…someday! Yes, we need to do all we can, but then we have to accept that the timing of the results we hope for is not up to us! That point of view has helped me roll along on a slightly more even keel. I love your blog and hope for many “up” times ahead.

  10. Lisa says:

    Hugs. I know the roller coaster all too well. We have been on the ride for 5 years. The drops make the quieter parts of the ride THAT much more enjoyable. And just so you know, this Autism momma hasn’t had a haircut since February, has dust bunnies staging a revolt in the family room, and has Mt. Laundry in her bedroom. However, my kids have gotten their therapy, and they get my attention and love. Hang in there!

  11. Thank you for your blog and thank you for posting this…. You care, you’re there for your son and you love him. You’re a great mum and he’s very lucky to have you. Look after yourself… Maybe we should make a pact to both get those roots done!! Lol. Love Vic Xxx

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