As a mom of a special needs, sensory seeking needs, call it what you will- child, your best teacher is your own child. You buy countless books, talk to your child’s study team (OT, PT, speech, etc. etc. etc.) and you feel like you really have a grasp on your child and his needs. But then, your child surprises you and changes things up and completely shakes the situation up, totally making you question everything you’ve done to help him up until now.
This is what happened with me and my son Asher. I had very carefully planned the design of his room, thinking of all the minute details that could help him, and others that might trigger him, so I could eliminate them. Everything was great! I was a hero! He loved his room. He slept in it. He appreciated that I redecorated it for him. And then it went downhill. Or so I thought.
First, let’s discuss the issue of behavior.
My husband and I had finally decided that we should be working with a behaviorist, because we just didn't know how to tackle all the oppositional, defiant, stubborn behavioral issues- and we just couldn't do it alone anymore. Undergoing a behavioral intervention was a game changer.
I don’t want to generalize, so I won’t. But from most cases I work with, and from what I hear, a lot of kids with sensory and other needs, experience behavioral issues. Why? They’re easily frustrated and bypass language in order to use behavior- it’s quicker. It takes too long to talk and explain. Their senses are overstimulated. They don’t feel right in their body and don’t know how to describe it to you. They may also do it for attention- they need you so badly, that they don’t care if they get positive or negative attention, as long as they have your focus on them.
There are so many other reasons. I'm here if you want to email me or ask me questions about this topic.
And also, I highly recommend getting a behavioral team to help the family understand how to deal with your sensory seeking child, since sensory needs are often paired with behavioral issues and/or ADHD, ODD, anxiety, etc. It is already so hard to deal with those issues alone, that there's no more energy left to discipline the child. The other kids in the family pay the price as well. Sometimes, when you're a parent and you're feeling like you're at the bottom and have absolutely no energy left, that's when you know you need the help of a professional.
Once we had "mastered" our child and gained control over his behavior, we felt like we were on top of the world and could conquer anything. My husband even suggested going away together as a family for two nights. I said: “Are you crazy?? Do you want me to go all grey?”
So here we are. Post behavioral intervention. With Asher's new room, or rather the "ruined" one.
Now, here's where sensory design is different. Let's say you design a room for a client. A living room for example. Once you’re done with the design phase, order the furniture, and install everything, that client is good to go. For at least 5-10 years or whenever they decides they want to give it another makeover.
But with a special needs child, there are constant transitions, sometimes 5-10 weeks. So decorating and designing a space for them can be a multi-step project.
Children who have a difficult time with transitions need to be introduced to the idea, and eased into it slowly. Once they feel comfortable with it, they might allow you to go ahead with it. However, after a few months, they may outgrow it, not feel comfortable with it anymore, or simply decide it cannot be in their life.
We don’t want our kids to dominate our lives. I’m a huge advocate for that. But, if we can, let’s help them feel comfortable and safe in the space they pick as their own. Can you put yourself in their shoes and try to see how they feel? I can't even begin to think about it, it sounds so complex.
Imagine there's a tiny pebble in your shoe. Doesn't it just drive you crazy? It doesn't matter how small it is, it needs to come out. The same goes for a heightened sense. If the child is hypersensitive to sounds, it will take over his life until a solution is implemented.
And so, with my son Asher, he loved his room, but one day decided he didn’t want the wall hangings I had put up in his room- the ones with the affirmations. I can assume it felt like that pebble in your shoe. He decided to rip them off. And literally ripped the paint in the wall. It hurt to see that. All my hard effort down the toilet. It's almost as if the wall hangings were triggering him to be angry, even peeing on his carpet. Huge behavioral outburst. Absolutely infuriating.
Once I had myself calmed down, I told him I wished he would come and talk to me about it. He didn’t respond to this. Of course he wouldn’t talk to me about it- he’s a 5 year old with impulse control and sensory issues! Did you expect him to? When he feels it he just goes for it. He will make a smart businessman one day and pay for my lavish vacations to make up for this :)
I thought and thought. And I remembered he told me he had wanted wallpaper like in his brother’s room. The thing is, that he was initially so uncomfortable in his room when it was painted navy with stars, that he needed a reset and that’s why I painted his room (by myself i might add) a light color to calm him. Had I gone from the stimulating stars to putting up wallpaper, it wouldn’t have been effective.
He has graduated from that light color and was now ready for wallpaper- so he decided.
So I told him: "I know you want wallpaper like your brother. I remember you had asked me. And I assume you ripped up the wall hanging because you didn’t like them anymore. Next time you'll tell me first before doing it. I picked four options of wallpaper for you and you just pick one. Then I’ll put it up on only this wall. But- you need to promise me you will not rip up the wallpaper. Ok?"
We were in agreement. Motion passed.
He picked a wallpaper that he absolutely loved, and so did I! And it’s funny because he picked a pattern of blue waves. Which is actually a biophilic design, meaning incorporating nature into our indoor environment, to create a calming space.
It really is calming. I really enjoyed putting it up myself, because I knew it wasn’t just me liking it- it was a mutual decision.
It actually seals the room much better, and it feels cozier than before. But- everything happens for a reason and there’s a reason we started with the light paint color.
This also reminded me to go with the flow. This was a transition. I didn’t want to go through it but we had to. It gave my son the opportunity to have a voice, which is difficult for him because he has a language delay.
I swear I can write a book on this topic and how sensory design affects children.
When designing a room for a special needs child, keep in mind that there might be multiple phases. So don't be surprised if the initial design changes after a few months. I’m not suggesting that you buy a bed and after 3 months buy another one. But just like what happened with my son Asher, might happen to your child as well. The most important thing for you is to be mentally prepared and follow your child's lead in terms of how they feel. They will tell you exactly what they need. And, even though you know your child best, it's also very important to be involved with the team that works with your child, and keep up to date with their progress. It will help your child in this whole process.
So the moral of the story is, parenting a sensory child is quite the challenge. There are so many layers to uncover. And every time you uncover a new one, you learn a new thing about your child. It's not always pleasant, you don't always do the right thing, but at the end of the day we all have the same goal: raise a well-balanced child who will know how to function in the real world. I sometimes have to remind myself that we do the best we can, and that being a good enough mom is good enough. Our children will turn out just fine, because we put so much effort into them. These are just little bumps in the road, but the most important thing is that YOU are helping your child. And that's the best you can do!
We started with this design:
Then progressed to this: huge difference in the feel of the room!
Clearly, the feeling changed.