Losing Friends may Happen when Raising a Child with Sensory Processing Disorder

My child got diagnosed with Sensory Processing Disorder when he was 5 years old. Before that time, doctors told me that he’d grow out of his screaming and crying when I tried to dress him and that he was just a picky kid who was slow to move and to listen. Five years ago, doctors weren’t as familiar with the signs of Sensory issues, or the Autistic Spectrum, and they just classified my hyper son as ADHD.

Over the years, I’ve learned so many things that work for my son. We keep the house low on stimulation, with little TV, music or computers. I know that he takes time to transition so we make sure he wakes up really early every day, which means he has to get to bed early every night. Because he takes ADHD medication to get through school, he often can’t sleep at night so in addition to our night time prayers, he gets a melatonin to help him sleep. I know that if he doesn’t sleep well, that morning will be a disaster.

I also know that Jeremy needs a lot of activity which means that sports are a priority in our house. I have spoken to the teachers and explained that while he has inattention, that ADHD is not the core to his issues, it’s an underdeveloped system that is still building. It’s the body, not the brain that is the issue. Additionally, he has auditory processing disorder so we’re aware that he has to be told things a number of time and we have to get his attention first before talking.

All of this awareness took trial and error and thankfully, because we changed his diet, his defiance is mostly gone. That happened in a few short weeks, by getting the preservatives out, high fructose corn syrup out, and the vitamins into his system. We stopped doing white bread and gave him healthy alternatives. The difference in his behavior was and is remarkable. He can now eat a bunch of candy or chips and he’s off the wall within 15 minutes.

Imagine the complaining that we get from an 8 year old who wants to get high on candy like his peers. We have to set limits and we discuss it thoroughly. We let him have candy or sugar if there is nothing planned but outdoor activity. Otherwise, we tell him that he will have to live with his behavior and if he can’t control himself and if and when he goes a bit nuts while having a sugar high, which can be hyper or annoyed and whiney or uncomfortable somehow. The result is never fun.

Imagine a child though who has mostly gotten through a lot of these issues. At age 8, he’s able to mostly determine how to conduct himself and when he doesn’t, his mom is right there making sure he apologizes to the kids or to the parents or whomever. He is on ADHD medicine which helps his impulsivity and constant talking but there are days when he still has to apologize. But, he doesn’t keep repeating these things over and over. He finally gets the message usually by us taking away play dates. He changes his behavior immediately when he knows he’ll lose privileges.

So I guess I understand when I kept hearing our best friends slip when they were talking about the evenings their families got together and noticeably we weren’t invited. Over and over it happened this summer and my husband and I explained it away that they’re all on the same baseball team or all go to the same school. But then, last weekend at the Cub Scout campout, I realized how mean their boys were to Jeremy! Jeremy told me that they told him they didn’t want to play with him. They didn’t give a reason, they just told him to go away.

When we got home, I tried to put together a Halloween party for us all and mentioned that perhaps my friends could mention this to their sons and that whatever I needed to do to get Jeremy in line, I’d do. Their answer? “We need to talk”.

At first I told them I’d talk, and I shared with them by email that I’m sure that Jeremy was hurt, because I was hurt that they had stopped socializing with us, and that shouldn’t we learn how to deal with our differences? And regardless, no one should be mean in spite of our challenges. If it were me, I’d go right to the parent and tell him or her that their child was saying inappropriate things, or I’d go right to the child and share with them that saying hurtful things aren’t going to win friends and then demonstrate another way of doing it. I would have shared with them to come to me if Jeremy was saying anything or doing anything that wasn’t nice as well.

But, nope, my friends have chosen to not socialize with us unless they have to, and because of that, I’m now reevaluating whether I want to talk it through or even hang with them at all. After all it was them who heard me share my frustration of trying to figure my child out, and they knew how difficult my daily life was and were there as things got better and better. And I never dreamed that they’d decide that they’d stop seeing us because of it and can’t imagine that they think this was the right thing to do. And perhaps if they would have talked with me first, then I would have been a bit more open to hearing about how frustrating it was from their end.

Instead, my husband and I have discussed that some people just cut others off without saying anything about it, even if they’re your so called best friends. They don’t know what it’s like to raise a child with a disability and they would rather not deal with it. And even though I’ve told them I’ll talk with them about it, I feel like I’ve been kicked in the gut and I don’t even want to be around them right now. Perhaps in time, I’ll understand that they didn’t know how to discuss this with me in the first place and that they may feel that the kids need to get older before they should play together. But I’ll never understand why a person would not apologize for their child being rude or mean. It’s just a different way of handling things I guess.

We all grow in compassion when we go through trials and challenges and make it out on the other side. Perhaps I have had to lose our best friends temporarily so I can be of service to another family who will go through the same thing. It’s not fun, but perhaps its part of life when you’re dealing with a child who is a bit out of the box.

I found this quote that I thought was a great line:

A real friend is one who walks in when the rest of the world walks out."~ Walter Winchell

And it made me realize, perhaps they weren’t really friends who would be there through thick and thin. That was the most hurtful thing of all that I thought they were real friends and instead they were just friends out of convenience not commitment.