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!! I stareted the journey about 6 months ago and we are already seeing changes. These types of posts are what finally got me to have my daughter evaluated for SPD. I am proud of myself for pushing foward and I am so proud of my daughter for the work she has accomplished. She is 4 and I finally feel like it IS getting better. Claudia

I am very curious about something-admittedly as the parent of kids who have not been diagnosed with with any disorder- but DEFINITELY would have escalated their tantrums to god knows what point if we had not disciplined them firmly when they first began ranging from 6 months to 18 months in our kids. And I mean firmly, from the very first ones, which we had braced and prepared ourselves for, determined not to let it happen, and chose a book and method that trains against it...

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Did you include in your therapies: osteopathy; CranioSacral; or Feldenkrais Method(r)?
Many times a component of these diagnoses involves jammed cranial bones or a craniosacral system that is compressed in some other way. Head-banging, deliberately running into walls, chewing hard and similar behaviors can actually be functional in a way. They may be the child's attempt to free the jamming which puts pressure on the brain...

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This is sooooo helpful. I just found this posting and now I don't feel so alone, like it is just my son having these challenges. Is there anyone in the South Bay (of Northern California). I could so use a support group! I also have 3 boys and my middle 8 year old is my challenge. How do people manage the dynamic and relationships with their other kids when one is going through this? THANKS!

Amen. My son, fortunately, was diagnosed at age 2. I had read all of the books and they said that early intervention would make a "world of difference". I wondered what a "world of difference" meant. Would it mean my son could play on the playground with other children (instead of just standing there and crying)? Well, I can honestly say that a "world of difference" doesn't even begin to cover the difference that I see in my son...

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Oh my gosh!!!!! I could not have identified with this article any more!!!!!! I have a 12 year old who has sensory issues that I NEVER thought we would escape...

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This post was so reasuring as we are dealing with this now for our 4 year old. My son has sensory processing disorder and we are trying to figure out the best sensory diet for him and keep him on schedule. It is a lot of hard work, but glad to hear it will be worth it in the end. I know he will never grow out of it, but hopefully will grow into the disorder gracefully.

I can't tell you how I fill up with emotion when people tell me it will get better - that someday my son will start to talk and someday he will eat normally and someday he won't flip out if there's a tag on his shirt and someday my kid will let me put socks on him and someday he will give up the shoes he's worn for a year and a half, that someday my kids will be off to college. Someday. But for now, as the Mom of 2 special needs kids, Someday will not come without a great deal of work today...

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I am moved to tears. My son is 5 and has just started kindergarten. We are dealing with potential sensory processing disorder, (ADHD has been ruled out) testing for Aspergers, Autism and now schizophrenia. I am completely exhausted and it feels never ending. I cry all the time and stay so nervous waiting for the phone to ring for the school to tell me that Logan has thrown a chair, kicked furniture, ran from the classroom, etc...

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Thank you--it's reassuring to hear that the self-regulation does eventually come. My daughter is 7 1/2 and has ADHD in addition to her SPD. I often wonder when she will learn those self coping skills.

@Tara - I am curious about something too... what resources did you consult to determine what your 18 month old was trying to communicate to you, through her violent tantrums, before you decided to scare her into submission instead of determining what was really going on inside her vulnerable little body?

I realize I must sound offensive implying that your daughter stopped tantruming because she is afraid of you, but that is what I have seen in other people I know...

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I found the one question to be full of finger pointing and accusations, but I also found it kind of funny....Honestly, if you look into SPD you will see it's not just about tantrum's. There are so many more, way more, symptoms to SPD that tantrums...

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Caitlin,
I'm guessing you didn't try discipline or you'd know it doesn't make your kids scared of you.
There are the kids like in Melissa's post, but there are kids being diagnosed just for severe tantrums too. My friends kids have none of the injury misperception or self mutilation which they can't feel, or the sensitivity to how other things feel, learning delays, sensitivity to environment etc...

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Tara,
My best advice for you is to do some digging, find a local OT that is trained in SI and ask her the question that you have asked Hartley. He or She will be MORE than happy to explain in great detail the testing that a child goes through to determine if it is just poor parenting and lack of proper discipline or if the behaviors are caused by a neurological disorder...

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@ Donna 10/27/10, You can make your own weighted blanket, or look on ebay. Talk with the OT, but it is 1 lb of weight for every 10 lbs the child weighs plus 1 lb. We have one, my son weighs 38lbs, and the blanket is 5 lbs. DEFENITLY talk with the OT on how they think you should use it properly.

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