It’s been going between bouts of crying, screaming and rages. All over the Wii. I felt that an “episode” was coming sometime around mid-last week. I can handle this. I had a LONG good break. I just need to keep my cool and know that this too shall pass.
This is something I’ve come to understand in the past few weeks. I’m lucky enough that I have a friend who, as an adult has just realized that she has been struggling with undiagnosed Asperger’s her whole life. The discovery that her daughter was giving her such a hard time in the morning because of socks – but could never verbalize it – made me realize that my son may not always be telling me why he is feeling and acting the way he is.
I also just started reading Asperger’s Syndrome and Young Children by Teresa Bolick. She has taught me that “My head hurts,” can actually mean something as unrelated as, “I don’t like the way that food looks.” Now when Jonah has a “behavior,” I’m finding that I can play detective and almost immediately find out what’s really going on. Do you even know how liberating that has been for me, AND for him? Tantrums are shorter, discomfort is diminished and I have a much greater understanding of his feelings. My anger towards him has all but disappeared. Even though I knew he wasn’t willfully being difficult, I still didn’t fully understand it. His overall attitude has began to shift from, “They don’t get me,” to “Oh my gosh, they REALLY get me!”
The look of relief in his eyes is priceless!
We had our CHoP appointment! Here’s the concensus:
Asperger’s Syndrome (duh!)
Lack of Coordination
And so we move on…..
The trenches of having an Aspie home. Full time. For a month.
This posed numerous problems. First problem was that he decided he no longer wanted to wear clothes. We finally found underwear that he felt was suitable though, thank God. So he basically spent the month in his underwear.
Any time we tried to go out, he’s protest. He didn’t want to wear clothes.
His eating became erratic. We ended up, after much deliberation, putting him on a medical supplement to try to avoid “assisted feeding.”
He had almost no services the whole time.
Everything scared him. The sun scared him. The pool scared him. The heat scared him. New people scared him. He became a complete shut-in. If we HAD to go somewhere, it was with him kicking and screaming.
My boys were at each others throats. They were NOT used to seeing so much of each other. And they are usually best friends.
I tried to take them down the shore to get help from my family, but all I got was a non-sleeping one year old and a five year old who became completely out of control. He was not in his own mind, he was somewhere far, far away. He was abusing everyone, physically and verbally. I had to get him home. Fast.
My brother had to help me get him out to the car. The nice thing about this, is my brother had never seen that side of him before. Nor had my sister and brother in law. The whole year of whispers I’m sure went on behind my back were now being retracted. They saw it now. They saw what i live with.
Jonah is now back in school. His last Progress Report from his behavior team was his best one yet. We’ve had a few regressions, but he always comes back to us. His teacher is amazing, in all ways. He is happy and content. He has FRIENDS. He has CONFIDENCE. He is feeling like things are falling into place. He starts Taekwondo next week. That should be interesting…..
So our world is good. Wheezie is having his moments, but is overall very healthy and chunking up like a champ. He does NOT.STOP.EATING….. quite a change from what I’m used to. He’s the sweetest daddy you could ever want – wrapping up his elmo in his blankey, feeding him boobie and burping him before he puts him in his “cribby.” We have frequent tea parties and he vacuums my house with a sweeper vac. He is such a sensitive, kind soul.
He is also throwing and catching balls like a three year old. He’s looking like he’ll be a lefty. My dad is over the moon! I am over the moon.
I keep hearing snippets of moms talking about preschool for next year and I almost can’t deal. I’m ready to take some time for myself and my mental and physical health, but I am not ready to let him go. I better be by this summer though!
That is all. I’ll be back. Sooner rather than later 🙂
I haven’t had trouble getting to sleep in a long time. Just too much going on right now. I’m feeling overwhelmed. Maybe I’ll blog about it soon….
How do you tell a child, “You have a disorder.” ? How old must they be to understand it? What if their cognitive understanding is advanced but their emotional skills are behind?
It’s not like saying to Eli, “You have asthma. This makes you a little different.” Sure, I can say that to Jonah, but the truth of the matter is that he will think there is something wrong with him, no matter how hard I try to convince him otherwise. I don’t think there’s anything wrong with him at all. I have grown to thank God that my child has a gift. My husband and I have never wanted to be like everyone else – how on earth could we expect our children to be any different?
He’s started with comments. He told his wraparound yesterday that she would not be with him in the fall. She will be with him in the fall, he has not completely met his goals. But he told her that he didn’t need her anymore and she could stay with his old teacher. He didn’t need anymore help. So he knows. He knows that he is different. He knows that she is there for him. He knows he’s the only one who gets OT.
I decided tonight to start to talk to him about it. I told him a few weeks ago after a disastrous walk through a casino and a near meltdown at Rainforest Cafe that he experiences everything more intensely than others. He got that. So tonight I asked him, “Do you know why you have Marianne?” He nodded. “Do you sometimes wonder why you are the only one with a Marianne?” He nodded again. He loves Marianne, but he hates her lipstick. So therefore, he hates her.
So I told him. “You’re a little bit different than everyone in your class. But you are special, not worse. You are smarter than everyone as well. So sometimes you have trouble controlling yourself. You have Marianne so that you have someone to go to when you feel out of control.”
I started to feel like I was going too deep. Geoff stopped me. I ended with telling him that his friend gets OT as well, but I don’t think it helped. I wasn’t prepared, and I wasn’t ready.He wasn’t ready to accept what I was telling him, either.
I want him to see, like I do, that he has a gift, not a disorder. Now if only I could figure out how to do that….
I’m having one of those weeks where I’m just without words. So many emotions and the words just get jumbled. I’m just sitting back and repeating dilligently, “God has a plan.”
My sheer joy and love for him is outweighing everything else, but it’s the worry that’s suffocating me. Strangling. That is all.