Special needs parents | Special Needs Essentials Blog

We’re happy to introduce a new gust blogger to the Special Needs Essentials community, Jenn from Positive Parenting Specialized. We are glad to have her unique perspective on our blog!

Hi there, I’m Jenn, a single mom to a seventeen year old with Global Depression, a fifteen year old with Asperger’s Syndrome (and a hand full of co-morbid diagnosis), a 10 year old with autism, Type 1 Diabetes, and Generalized Anxiety Disorder, and a 7 year old fireball with Disruptive Behavior Disorder, Sensory Processing Disorder, Learning Challenges, and Anxiety Disorder. I am in my forties and have started blogging to try to support the kids and myself. I love being a work from home mom, praying often that it stays this way.

Life with four children who all have unique challenges might be surprising. Maybe some of these points are “No Brainers.” See for yourself!

Here are Five Things You Might Not Know about Having Multiple Children with Special Needs:

1. We have fun!

Jumping on the trampoline, having pillow fights, going sledding, playing in the

now, etc. All these activities have brought us tons of enjoyment. So when I say I have multiple kids with special needs, please don’t think of us crying in a corner (although, that has happened). I love my kids. I try to support them, cheering them on at every corner.

Other activities that I love to watch the kids do is play in their body socks. They often pack one body sock full of pillows, then all three younger children pile in together. Inevitably, one of them gets upset. It is so fun, while it lasts.

Another fun go to activity we do, is we take a “Sensory Tunnel,” and pull the kids around on a hard surface while they lay on it. They love this! I love hearing the squeals of delight.

2. Diets Can Be Hard

I am a short order cook at every single meal! Even with pizza nights, there just can’t be one pizza. Nooooooo. One kid can’t stand too much spaghetti sauce (it makes him dry heave), another kid can’t have gluten, etc. So, I always end up making a few dishes, much to our Behavior Consultant’s Chagrin.

The adage, the child will eat when they are hungry does not match with autism. At some point my kids have gotten down to just GoGurts as a diet. So, if I find foods they will tolerate, I am happy to have them eat. Sure, life might be more complicated, but I sleep better knowing they are getting more nutrition than GoGurts provide.

3. The Kids Feed Off of Each Other.

This is both bad and good. The bad is that when one melts down or is in a funk, they all tend to go down that path (like babies in the newborn nursery atthe hospital, when one cries, they all cry).

The good side is that when one needs help, they all tend to try to problem solve. Sometimes, the problem solving makes no sense or is completely out of our means, but they try. So I say this to convey, “Kids with special needs do have empathy. It just might look different than what we envision.”

My kids feed into each other, however, they do not copy each other. I wish they did. Then, they might be more compliant. They feed off of each other’s moods, but not their actions.

4. They All Are Different

Three of my kids have been on the Autism Spectrum. Even though they have shared a diagnosis, they couldn’t be more different. My fifteen year old is very rule bound (thank God for him!).However, my younger two can be defiant, liking to color outside of the lines, if you know what I mean. One loves to be naked. All three are frustrated very easily. None of them developed according to the normal milestones.

Even though all three have been on the Autism Spectrum and communicating is difficult, you couldn’t believe how diversely they grate each other’s nerves. They know how to push each other’s buttons.

This is part of a vast puzzle: their repetitive behaviors irritate each other. One paces, another can’t stand it and keeps ordering them to sit down. Another makes constant strange noises, the others beg him to stop. And yet the third, will constantly snap, butt bounce, and body rock. The others will beg me to make it stop.

This sounds like it would be oh so funny, but I assure it is NOT. Be in my house for more than an hour, I bet you would want out quickly, especially right around bed time. Riding in our van can be quite the arduous journey.

5. I Love My Kids Always and Forever No Matter What.

Just like typical kids, I am proud of my Fantastic Four. I know there is nothing they can’t do. It is just inspiring them to do their best, pulling out their unique gifts and talents. The talents come to the surface eventually. It takes a great deal of time. We celebrate everything, especially progress, no matter how small or how long it takes to happen.

I feel special needs kids aren’t THAT different from typical ones. They all love to play, love to have fun. For special needs kids, being able to have fun may be more difficult.

But regardless of any circumstance, I am proud to be their mom no matter what. In the moment, as I am smacked by one of them, I may not feel that way. None the less, in my heart of hearts, I am forever theirs, and they are forever mine.

I am always proud of every step forward and we manage through the steps back. All in all, we are family. We stick together, helping each other through it all.

I could see it starting….

Those of you who have children with sensory issues know what I am talking about.

The start of an overload.

A sensory overload.

For us now, it is usually caused by too much going on with our schedules or emotions about some day to day things that Elizabeth has not talked about. Back when Elizabeth was little, the overloads or shutdowns could be triggered by as little a thing as putting on shoes or having someone talk to her in public.

But now, it is the above.

So, she started saying she was not hungry. And for Elizabeth that is huge. It is like saying that “Today I am not going to use oxygen” That is how significant that comment is.

Then she started humming a bit. NEVER a good thing. She does this to calm herself.

Then she started having trouble organizing herself and her system enough to do the simplest of tasks. I asked her to get something off of the pantry shelf. It was right in front of her and she was unable to locate it.

Yes, it was starting alright.

On this journey with Elizabeth, we have learned how important it is to talk, share, express feelings and to teach Elizabeth how to advocate for herself.

We talk often and long, she and I.

But usually this has to wait until her system is calm again. But the self advocacy is the part that she has been taught to use to help us help her. It begins by her saying “ Mom, I am overwhelmed, I need a break.” Or “ I need time alone.”

So our hard work paid off and she said one of the above phrases.

So now came the time to talk about what sensory items she needed to help her.

She picked her “big heavy blanket”, It is like a weighted blanket but is actually a heavy comforter. And her vibrating pillow. Whose name is Senseez.

She uses both of these, along with dim light and vanilla wax melts ( plug in ones, NOT flame)….this combination.

This vibrating pillow is something she loves very much. She says it makes her feel “calm” This pillow has a nice soft vibration to it. Typically this pillow is used when she is overloaded.

She will pick it when she is nervous or scared.

Senseez Cushion

Usually she leans on it to activate the gentle vibration But you can sit on it or hug it as well.

Elizabeth uses the pillow at home during this quiet time, but it can be used at school or at bedtime and for reasons other than the ones we use it for.

About 45 minutes later, Elizabeth came downstairs. “ I feel relaxed Mom.” And she looked like it too. There was a nice calmness to her.

So we took the time later that day to talk about what led to the need for the break.

She had so many things she was thinking about. Pretty deep things. Like “Do you think Popi likes heaven because I miss him?” Popi is my beloved Dad, who passed away almost three years ago. And there were more thoughts and feelings as well.

So we talked and talked and I hugged her when she cried. I love this amazing child so much.

I am not saying that dealing with shutdowns or meltdowns is ever easy, because it never is. But as special needs parents, knowing your child needs and HOW to help them get those needs met, via a sensory diet, is critical to help them navigate this thing called life.

Please take a look at Senseez, a sensory product, and decide if you think it would help your sensory child or ask you OT for their help. And as always, I would love to hear your thoughts and the successes you are having on your journey.

I wish you a peaceful week.
Michele

Senseez: The Sensory Overload Solution

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