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

Just my 2 cents - Hartley I am with you it does get better, but man I can't wait until we are at your stage :) And I am sorry I have to comment on the "tantrum" talk...

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Personally, other than that one person in our life who causes trouble, I have a lot of people who marvel at all that we have done and gone through with our child. So many have told me they don't think they could do it and that it takes an amazingly patient person to be able to cope with having a child with this disorder.

For us, we knew that nothing we tried was working and by 3 years old I knew something was really wrong; that what I suspected in the 3 years prior was a reality...

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@ Tara So... what you're saying is that you can't take it right?

I have no opinions on you or your child, because I don't know you. My point was to illustrate how it feels when others judge and make assumptions about your children and your parenting, when they are not in a position to form an educated opinion.

Doesn't feel too good does it?

@ Jen, thanks for being the calm voice, and spreading awareness. Very well said.

Kristin and Caitlin, you Rock!

Melissa, your post made me cry... Every word rings so clear and true. Each one of us could write the same thing. I didn't put on here in great detail all of the ways I tried to punish my son so that I could answer Tara's question of "What exact discipline methods did we try to stop the meltdowns." Because it is just too painful...

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Kirsten, we've never used time outs or threats either because those are totally ineffective for tantrums.

Jen, I think your explanation is the perfect example of the difference between having disciplined first and realizing it didn't work and just going straight to the therapists first instead, we don't often hear...

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Tantrums are not a symptom of SPD. They can be the result of severe frustration, anxiety, severe discomfort, just being mentally spent from a day of one super overwhelming thing after another, this all due to having SPD.

I read an article once that gave a person a glimpse into what it is like for the child with SPD. It suggested that you close your eyes and picture this.. (I am paraphrasing as I can't remember exactly) but close your eyes.....

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Oh Tara. I am genuinely disappointed. As I read your post I was starting to believe you were backing off of the careless judgements of others. Then you had to throw in another judgement about a mother you don't know, making assumptions and condemnations. There is NO value in that kind of approach. That was the lesson I was trying to illustrate with my initial response.

You also missed the point of Jen's comments on the discipline she used with her son...

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Caitlin.
I knew Jen wasn't advocating running right to the therapist which was why I understood her answer best. You misread my comment.

I have learned not to judge when a tantruming child I don't know may have SPD, but I think an excellent clarification for all the people like me who feel like lots of newly epidemic behavioral disorder diagnosis go hand in hand with the current trend to not discipline is to include the part about the discipline that was tried...

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Tara, you're still missing the point. You shouldn't assume people don't discipline their kids just because they don't feel compelled to explain to you how they DO discipline their kids.

You should give them the benefit of the doubt - something you did not even afford Hartley Steiner (the author of this post) who is the foremost blogger and award winning author on SPD...

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Thank you Caitlin! I could not have said it better myself. I questioned and repeatedly brought up to both of our doctors my concerns, all the while maintaining consistent firm boundaries with my child. You said it best when you said that most of us know deep down that something is not typical. Some parents back off completely with discipline (and maybe that is what Tara has been witness to with the families she knows), some maintain like I did but still search for answers and help...

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I just want to say that I am so happy this conversation is taking place. I know that many are reading it and misconceptions are being dispelled. Minds are being challenged, thought patterns and beliefs systems are being reconsidered. We are all growing in knowledge listening to differences of opinion and working out misunderstandings. Conversations like this one were of huge benefit to me when I was new to SPD. They always gave me a lot to think about.

Thank you ladies!

HELLO EVERTONE, MY SON IS GOING TO BE 3 IN IN TWO MONTHS AND WAS RECENTLY GIVEN THE DX OF SPD. I HAVE A QUESTION, EVERYONE KEEPS TALKING ABOUT THE DIET, CAN SOMEONE PLS POINT ME IN THE RIGHT DIRECTION AS TO WHERE TO FIND OUT ABOUT THE SPECIAL DIET, IAM NEW AND NEED HELP......THANK YOU TO HARTLEY AND ALL THE WONDERFUL COMMENTS...

Our son was evaluated by an OT at school and her report indicates our son has some signs of SPD. His teacher is now implementing some of the OT's suggestions for a sensory diet during his classtime and it appears to be working. The OT told us that she can't give us a "clinical diagnosis" but can only tell us her observations and suggest solutions to help him in his classroom (and things to try at home are working too)...

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Armando and Kathy: A school OT (Occupational therapist) can only give you OT for school related needs. You need to see a private OT that is trained in SI (Sensory Integration). That is how you get testing and OT for your child. The diet is a sensory diet designed specifically for your child's needs. Your OT will tell you what that should look like as it is different for every child. As your child grows his needs may change and your sensory diet at home will change...

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We recently started OT for our almost 4 year old son. Is anyone interested in starting a Portland group to share specific information like research, meet-ups, support groups, making your own sensory toys, school/teacher information, etc.

I'm looking for a positive way to connect with some other parents in the area. If anyone is interested, let me know and I could try to put some type of Yahoo Group together or something.

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