I actually wrote this post about two weeks ago but couldn’t decide if I really wanted to post it or not. Then I came across this quote by Helen Keller: “Believe when you are most unhappy that there is something for you to do in the world. So long as you can sweeten another’s pain, then your life is not in vain.” I know we’re not the only parents dealing with this and perhaps someone reading will know that they are not alone in what they are dealing with……
Sometimes Noah will have what I now refer to as (autistic) meltdowns. Think temper tantrum and that will give you an idea as to what these meltdowns are like. They involve screaming and crying as well as hitting, biting, scratching, and kicking not only himself but anyone or anything that is within his reach. Basically the only thing you can do during his meltdown is remove him from the situation if it was a situation that set him off, make sure that he is safe and can’t harm himself or others, and then just ride it out which usually means we are holding his arms so that he can’t hurt himself. They eventually result in pure exhaustion by anyone involved.
Sometimes the meltdowns do occur as a result of a situation. For example, if we are somewhere and Noah begins to feel over stimulated that might set him off. But then other times he could be in that exact same situation and be just fine, so you just never know. Other times, I know that they occur as a result of communication frustrations. Sometimes he gets so frustrated trying to communicate his wants and desires and we don’t understand and that upsets him. And then other times, I just have no clue what sets him off and is going on in his head.
I’ve rarely mentioned these meltdowns to anyone until recently. Have you ever heard someone say that when a child has temper tantrums it is the fault of the parents for poor parenting and discipline? Well, I’d heard people say that before and so I thought that Noah’s meltdowns were my fault (I didn’t realize that they were associated with his autism) so I just didn’t talk about them until we realized they aren’t tantrums – they are meltdowns. I recently found some really great information online that compared typical temper tantrums to autistic meltdowns and it was clear to me that Noah is experiencing meltdowns NOT temper tantrums. And so, I finally decided it’s time to not be silent about the meltdowns. Maybe there are other Mom’s who are dealing with them and might have some suggestions that I haven’t tried yet.
Just the possibility of a meltdown affects our lives. We haven’t been to a sit down restaurant with Noah in a very, very long time (um, since he was about 5 or 6!) because that type of situation can often result in a meltdown. Our family understands this (especially my my parents as they have experienced many themselves!) and is supportive and helpful but some of our friends are a different story. I think that when we can’t drop everything and run over or don’t want to expose Noah to certain situations (i.e. a party with a lot of people) they take it personally, like we don’t want to spend time with them when that really has nothing to do with it. I really don’t think you can completely understand how involved it is and what it all feels like, unless you have experienced or witnessed it.
So, lately we have felt pretty alone in dealing with these meltdowns to the point of where I’d prefer to stay at home then chance going somewhere and dealing with one. While they are not easy to deal with in any situation, they are much easier to deal with at home than in public with others staring and making comments.
He used to only have them every few months but lately he has been having them a lot more frequently! I really think that he is just out of his routine now that summer session of school is over. He LOVES school and does so much better during the school year so we are hopeful that things will get back to normal (or our normal rather) when school starts back which is not very far away!
Noah will be 13 in October so I also wonder if we aren’t dealing with some pre-teen hormones. He’s also realizing that he has limits and it frustrates him. For example, he was trying to turn the lamp on by himself the other day. He got very mad that he couldn’t do it. His brain knows what he needs to do to turn it on but his little fingers just won’t cooperate with him.
I just feel so isolated, depressed, alone, overwhelmed, and exhausted lately. But I am hopeful, very hopeful, that things will get better soon and it feels good just to get my feelings out!
I must end on a positive note….
Noah's been trying lots of new foods! He currently loves French toast for breakfast and will even help me make it – he stirs the eggs, milk, and the secret ingredient. I tell him stirring is the most important part and he loves it.
Regardless of whether or not others can relate to the post, I think that it might give you a small glimpse into the life of a family dealing with a child with special needs. It’s not easy but as a Christian I know God will not give me more than I can handle and it feels good to have just gotten all these thoughts, feelings, and emotions out on paper.