Photo by: Laurie Vain

It Will Get Better: Sensory Processing Disorder

Photo by: Laurie Vain

Before I ever got a diagnosis of any sort for my son Gabriel, I think everyone I knew had told me some version of the line, “It will get better”. I knew they all meant well, but I wasn’t dealing with your run-of-the-mill toddler tantrums with Gabe. Not even close. My son had meltdowns. Big, long, scary and excruciatingly loud, meltdowns. Gabe would cry for hours on end, for no apparent reason and crashed into walls for fun; this wasn’t typical development in my book, and I couldn’t understand why people were so quick to dismiss it with any of the old standbys (“He’s just a boy” or “He’ll grow out of it” or the non-committal, “It will get better”). How could people think that it would just get better? I wanted to believe them, I really wanted to, but I had lived with the ‘out of sync’ behavior for years, with no sign of it letting up, so I wasn’t convinced that my son would just magically ‘get better’ one day.

When Gabriel’s diagnosis came in at age 4 as Sensory Processing Disorder, I was so relieved that I finally knew what was going on, that I steamed forward – full speed – through OT and implementing a sensory diet at home and school without so much as taking a breath. If that was what my son needed then that was what I would do for him. After all, this is what would finally make things ‘get better’, right?

But you know what? It wasn’t easy and it didn’t just ‘get better’ as quickly as I was hoping. I was tired of being told by family, friends and therapists that things would ‘get better’. Did these people really understand what I went through every single day? Did they understand how upset my son was over the smallest things? How hard school was for him? How hard having play dates was? How difficult it appeared for him to enjoy the simplest pleasures of being a child? If things were really going to get better, could they PLEASE hurry?

Then one day, about a year after Gabriel’s diagnosis, I was just exhausted – the kind of exhausted that only a special needs mom can relate to. This particular day was not really all that different from the hundreds before it; Gabriel, at almost 5 years old, was having the umpteenth meltdown of the day over some perceived infraction on the part his two year old brother, Nick, who sat statue still watching him yell and throw things while I held my 3 month old tightly to my chest shushing and pacing with him because he hates loud noises. That was my breaking point. I needed things to ‘get better’ and I needed them to do so immediately.

I flashed on meeting a fellow SPD mom at the OT’s office the week before and decided I needed to talk to someone who understood my life in a very real way and could provide testimony that the elusive ‘it gets better’ truly existed.

I riffled through my purse in the garage to find her name and phone number scribbled on the back of a deposit slip. She said I could call her any time. What did I have to lose?

I dialed the number and was beyond relieved when she answered the phone. We ended up talking for over an hour – OK, I did most of the talking and all of the crying, but it felt great. At the end of the conversation, she quieted her voice, and in a tone so genuine and true, calmly said, “Keep doing what you are doing; it gets better.” And I actually believed her.

I believed that if she had survived this journey of Sensory Processing Disorder that somehow, some way, I would too. That my life wouldn’t always be chaos and meltdowns, that somewhere in my future there would be a family meal that we all sat through (not to mention ate), that there would be fun family vacations and maybe even a day I didn’t plan down to the minute. I was optimistic.

As shocking as it is, she turned out to be right. Today Gabriel is 9 years old. He self regulates and self advocates at school, he pushes on the walls without being told, he willingly takes the trash out for heavy work, and often volunteers to take ‘quiet’ time when he is overwhelmed – both at home and at school. He has an arsenal of chew toys and fidgets to keep him focused and calm him when needed. And perhaps most impressive, Gabriel has generalized those skills and can choose to do virtually anything he wants – wear special clothing for special occasions, including ‘cleats’ for football and a tie for holidays. He can tolerate gel in his hair for ‘crazy hair day’ and wear makeup on his face for Halloween. He can attend a jump party without covering his ears and even takes his heavy blanket with him to the movie theater, ‘just in case’ he needs it. Trust me when I say that this is LEAPS and BOUNDS from where we were just a few short years ago.

So today, as many of you are reading this, and are probably living that same sense of crisis between diagnosis and “It gets better”, I want to assure you that your dedication to your child’s sensory diet, to their continued therapy appointments and to all of the millions of things you do every day to help teach your child to live in this often overwhelming sensory world of ours, will pay off, in spades.

Or to put it simply: It will get better.

Hartley Steiner lives in the Seattle area with her husband Jeff and their three sons: Gabriel, Nicholas and Matthew. Gabriel struggles with Sensory Processing Disorder, High Functioning Autism, Bipolar and Learning Disabilities. Hartley is the author of SPD children’s book This is Gabriel Making Sense of School. Hartley chronicles the never ending chaos that is her life on the blog Hartley’s Life With 3 Boys. When she isn’t writing, or dealing with a meltdown, she enjoys spending time in the company of other adults preferably with good food and even better wine.

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97 Comments

thank you so much, I was having a moment with me daughter when I saw this on my email. Exactly what I needed to read. I'm struggling, but am confident that it'll get better.

Thanks so much for the comments. Just to know things will get better is the only way to deal with your child. My grandson was 6 years old in sept. He has made so much progress over the last year. It feels like Christmas every time he does something for the first time. I have faith he will be able to do anything he wants. Thank God.

We suffered with sleep issues with our 3 year old from birth. He never slept well, and the rationales varied from colic to gas to "it's just his style". We too were given endless variations of "it's just a phase", while there were times I stayed home simply because I knew I was too exhausted to drive safely. I hit my wall when he turned 3 and we realized all of our friends with kids under 6 months old were all getting more sleep than we did...

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Thank you. My 4.5 year old was diagnoised early this summer and it seems that things have gotten worse rather than better because Therapy is 'hard' for him so the evening after Therapy is a total nighmare for me at home. I can't tell you how many people have told me the 'it gets better' and I just want to scream. Deep breath and hope for the best that it really will get better.

Thank you for sharing! My son is speech delayed and has sensory integration problems. He is 2 years and 4 months, so there is no diagnosis yet. One of his classmates at school the other day asked me, "Does he talk?!" I didn't expect it to be so apparent to his peers that he was different yet. I'm happy your son has improved so much. It gives me faith that there is a light at the end of the tunnel. My son is in therapy 4 days a week and we just started in May...

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There are so many great things to do now for sensory integration. We did OT, HANDLE, vision, speech, and utilized Dr. Jeffrey Thompson's sensory integration CD (Gamma CD). I loved the Gamma CD because my son could listen to it while he did homework and it was simply incredible. He also had/has speech issues and the CD helped him tremendously with speech. There are quite a few studies that demonstrate this - http://bit.ly/c6QAbe...

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I was immediately drawn to this article as I wish this is something I had access years ago! Six yearsa go, I had never heard about SPD and I am in health care! My son was diagnosed with SPD at age six and while it has not been easy, we were fortunate to have access to great providers and occupational and behavioral therapy. He is now 11 and in the sixth grade and going great...

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I am overwhelmed at the number of comments here from SPD parents, grandparents and teachers! I feel lucky to have all of you be able to relate to my post, and wish I could write back to each of you personally! Please feel free to contact me through my blog any time. I hope to get to know many of you and your family as we all are going through this Sensory Processing Disorder journey together. : )

Warmly,
Hartley Steiner
www.hartleysboys.com

SPD....I so longed to have a name to put with my child's "condition". But then, nobody understood what it was and it was so hard for me to ever even explain it! By the time I got the words "I'm sorry, my son has Sensory Pr -" well, nobody cared. All they saw was a screaming child, and angry child, a child who needed to be "controlled"...

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God bless you for getting Gabe through with his confidence intact, so that he feels safe to self-regulate and self-advocate! It's not easy and you should give yourself a big pat on the back. Good job, mama!

I did find the quick fix! Your story sounds so similar to my son's story, the wild, uncontrolable tantrums. The rages over little things like not getting the balloon color he wanted etc. I knew something wasn't right and researched like crazy.I was confused, my other two children were beautifully behaved.But, I read an article about food dyes and behavior and over night I had a new kid. The change was dramatic...

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Reading this has made me feel less alone in my struggles, thank you!

My 9 y/o daughter has been diagnosed variously ODD/ADHD with sensory issues. Her toddler years were THE WORST and it has gotten better. We just found a good OT and are on the waiting list, I wish I would have known about it back then during the worst years. Even without OT, it has gotten better as she has matured, she has found some coping mechanisms on her own...

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We have alot of the same problems. My almost 5 year old son was dignosed with Aspergers, ADHD, ODD, and OCD. We can't go out to eat and have it be enjoyable, and eating at home is a bit, standing up, sitting down, standing up, another bite and so on. We got a divided tray, so nothing is touching each other, and working on eating at the rectangle table with a circle plate. He can't go shopping without a meltdown...

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Your article is wonderful and it does get better. My guy is 8 and life is so much better than just a year ago. Though we have learned that we take each day as they come and plan, plan, plan. Thank you for sharing.

My 6 year old daughter was diagnosed with SPD at age 3. She receives OT and PT at school and is in a special education kindergarten class. I would like to get her a weighted blanket but can not afford to buy one. I have thought about making one. I would like to know if anyone has any info on that.

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