Taking on the world

While in the midst of trying to deal with Jonah’s diagnosis, a plethora of people have set out to push my buttons.

1. McDonalds Playplace Workers…really? The door to the play place should not be left open, especially when it is directly next to an outside door. And having a door opening/closing war with my husband was not a good idea, as I’m sure you learned after I started screaming at your manager, called and made a complaint to corporate, and made a complaint with the owner. It’s really not rocket science. Children run. Some children dart. We closed the door for a reason. But please, give me a reason to feel singled out because of my children again, and I’m sure I can yell loud enough the news will show up.

2. Local Librarian…really? The Summer Reading Program is only for “well behaved three year olds.” Yeah, that makes sense. We wouldn’t want those misbehaved kids around all those fragile books filled with knowledge. Psh. What was I thinking.

3. Behavioral therapist…ugh. Here is the thing. I may tell all you wonderful people my thoughts, but I never, ever tell them to people in my every day life. But when Jonah’s Behavioral therapist asked my feelings about him going to diagnostic clinic a week before he went, I opened up. I told her I wasn’t sure if I thought he had autism. I was still on the fence about it. I thought he had other things (which he was also diagnosed with). But I said an autism diagnostic would be easier for us, because most people know what autism is, and it makes it easier when talking to people.
It is much easier to say, “he has autism” than “he has a sensory processing disorder and expressive language disorder.” Most people have no idea what those are, which means every time I say those words, I have to explain them. Most people who are informed that someone has autism understand and don’t ask further follow up questions. After all that, we talked about my fears, feelings, and hopes for what the clinic would bring us.
Today I called her to ask about visual schedules, and she said, “I heard you got the diagnosis you wanted.” Now I know I’m still in the emotional stage of this all, but I just about lost it. The diagnosis I wanted? How could I ever want my son to have autism? How could I ever want for any of this to happen? I’m not saying I regret Jonah. I love him more than anything, but autism is not something I would classify in that way. Yes, Jonah has taught me so much. He is amazing. But he has challenges. I can’t even understand how hard all this will be for him, but every step of the way I will be there, because I am his number one person. But deep down, do I wish I could erase this part of his life and make him like his brothers? Yes. No one wants their children to suffer or be hurt or frustrated. Autism is not what I had in my future when I married my husband, when we got pregnant with Jonah, when we had Luke. Autism has never been part of my plan. But now, it is. It is the ultimate battle. The massive elephant in the room, smashing glass things into rock solid metaphorical walls.
And I’m so scared for what this means down the road. I don’t treat Jonah any differently than my other children. He is equal. But will that change? And if it does, how do I explain to the other boys that Jonah deserves different rules, different attention, more of me than they do? How do I tell his teachers that I don’t want him treated like he has something wrong with him? He can learn. He can do everything and anything, in his own time. Right now it may be a challenge, but just because it is, I don’t want someone to do it for him. How will he learn if everyone swoons over his red curls and takes care of him all the time? And how do to I tell people that sometimes he does need more. Sometimes he needs to be let alone. He needs to hide. He needs you to disappear. How will they know the balance he needs? How will they challenge him?
I expect a lot out of all my kids.
Jude is five and reading. He scored higher than most children in our district on his kindergartner screening. And I know Jonah won’t be reading by five. Hell, we will be lucky to have him potty trained by five. But Jonah is visual. He can remember amazing things once shown. So I show him, everything. I expect him to know and be able to point out colors, shapes, and soon, letters and numbers. And he can. Every day we work on them, and it is fun, and he loves it. But when he went for his school screening, they reported that he knew none of his colors or shapes.
I was speechless. Every day he nails them with me.
And then they explained that they asked him, “what color is this?”
Of course he failed.
There is a massive difference between knowing something inside your head and verbalizing it. Simply rephrasing the questions as, “which one is blue?” would have shown them just what he is capable of. And that brings me to what this very long rant is about, how do I teach other people how to communicate, get through to, and educate my very special son? How do put him on a bus and hope that the woman getting him off the bus will care as much as I do?
How do I politely say to the librarian, “My son can’t sit still or use glue or carry on a conversation with you, but he would sure love being a part of this program with his older brother.”

How do I make the world understand.

Diagnosis

For weeks I have been trying to write a blog, but haven’t been able to push publish. I have been beyond stressed, and today, it all came to a head.
Today Jonah was diagnosed.

Autism Spectrum Disorder, level 2
Sensory Processing Disorder
Expressive and Receptive Language Disorder
Sleep Disorder
Feeding Disorder

It is done. Now we know. I thought I would feel better, but now I just want to cry. Now what? I was expecting this. I was ready for it. And now, I’m asking myself what I’m supposed to do now?

Special

Today Jonah went to the elementary school for his Early Childhood evaluation. I know this may sound horrible, but it is days like these I pray Jonah does badly. When Jonah is good, he is great…but great kids don’t get services at school. I needed him to have a normal or bad day so they can get a real read on who Jonah is. His great days are not the primary days we see, so I need to be realistic about who my child is and make sure he gets everything he needs. But today was a great day. He walked down the school hallway without holding my hand, walked into the evaluation room with slight hesitation, and then completed a 45 minute evaluation followed by a visit to the nurses office and social worker. Wonderful. As my anxiety grew, they informed me that Jonah would most likely qualify for services. He couldn’t answer their questions. He couldn’t cut with scissors. He couldn’t trace or draw a straight line. So even though he was at his best, he still wasn’t even comparable to where he should be. That was quite the blow for me. I know Jonah needs help. I know he is behind. But I guess I also always thought that on his good days he was more “normal” than “special.”
And in the height of my anxiety, Jonah leaned across me and sniffed the woman sitting next to me. And then he sniffed her more and more until he was nose to nose with her, smelling her.
I froze. Most people would freak out. But this woman smiled and whispered, “Do I smell okay?” And Jonah, using those ever awesome echolalia skills repeated. “Smell okay.”
And then I remembered who I am, and who Jonah is, and what our journey is all about…and laughed so hard I thought I was going to pee my pants.

And right now it’s okay that Jonah is sleeping on the floor next to his bed, because let’s all be honest, Jonah is special and that is wonderful.

Group Therapy

Jonah went to his first day of Group Developmental therapy today, and I cried a little while driving there. I could just imagine it.
They would rip Jonah off me and he would cry for an hour and a half, feeling like I abandoned him.
I couldn’t have been more wrong.
Yes, he hid behind me, and yes, he had to be pulled off my leg and carried in the room. But after sitting on the teacher’s lap for five minutes, he was fine. Actually, he was better than fine. He was amazing. He played with toys, did puzzles, lined up for gross motor, ran and played, sat for snack, talked, sat in circle time and sang and did the hand motions. The classroom has a camera in it, so I was able to sit in the waiting room and watch everything that was going on, and I could not believe my eyes. He smiled. He laughed. He talked to his teachers. He loved it!
After therapy his head therapist came out and told me she was so surprised with how well he did, especially since it was his first time at group therapy.
I am so proud of Jonah!
In other news, Jonah’s autism evaluation has been moved up to May 14th…so I’ll be freaking out about that for the next few weeks.

Head or Heart

Two rough days have sucked the life out of me.
We were doing so well with bedtime. The last two nights he has refused to get in bed, stay in bed, lay in bed, and quite frankly, I’m so tired of repeating myself.
Leaving the house has become a massive challenge. He cries when we put on shoes and socks. He cried about going on a walk today. He cried about a tree that we passed on the walk.
His speech is starting to slur again and I’m having a hard time understanding what he is saying, except when he is screaming no at me. I understand that.
Oh, and did I forget to mention that he no longer wants to eat? He has been skipping breakfast, eating a handful of fruit for lunch, and either crackers or nothing for dinner.
But worst of all, he is doing more and more repetitive behaviors. Two hours in the backyard scooping up dirt in his hands. An hour rolling balls of play dough back and forth on the table. An hour of being rolled back and forth on the ball. In and out of the swing all day. Sitting on he he couch fingering the weighted blanket over and over. Lining up balls and cars. Hand flapping.
And my reaction? I want to cry and scream and tell all these therapists to get out of my fucking house and leave us alone. You want to know what I’m seeing?
Three weeks of NO therapy at all, and we saw amazing improvements.
He went to a group therapy on Monday and another therapy came to the house on Thursday. So if this is all because of therapy starting again, what is next week going to be like when he has Speech on Monday, Behavior on Tuesday morning, Group on Tuesday afternoon, school evaluation Thursday morning, OT on Thursday morning, and Group Thursday afternoon? Is any of this even worth it? Because right now, at this moment while I am sitting in a chair in my children’s bedroom ready to cry, it doesn’t feel worth it at all.
The behavioral therapist told me, “He is allowed to have good days and bad ones, just like us.” And you know what I wanted to say to her?
“Yes, he is allowed to have a bad day, but what you people don’t seem to understand is just by you knocking on my door, he becomes so fearful, anxious, and stressed that YOU ruin his day. I ruin his day by taking him to the loud, crowded store. You ruin his day by asking him to look at you. I ruin his day by asking him to wash his hands or put on socks. So no, he isn’t allowed to have bad days, he is forced to have bad days by us. And quite frankly, what would happen if I just stopped? What if I just didn’t force him to do the things that bother him so much? Who cares if he doesn’t EVER touch shaving cream? I don’t. I don’t care if he ever plays baseball or is prom king. What I care about is right now. What is happening to him right now that is causing him to stop progressing and go backwards?”
Instead I shook my head and smiled, because I the end, I’m just his mom, not a professional therapist. I’m just the woman who carried him, who nursed him, who was the first to notice something was happening to him, his advocate, the one who walked away from her career so he could have everything he would need, the one who uprooted her whole family for better services and schools, the one who is here every second of every day without break. But what do I know?
And when I think about how hard all this is for me, I look at Jonah and try to think about how hard all of this is for him, and I can’t even imagine.
My heart is telling me to read the signs and see that something is bothering him, and the only change since all this progress are these new therapists.
My head, on the other hand, says to wait it out. It’s new. It’s scary. And he will adjust.
My son is hiding under a blanket, because sometimes that’s where he needs to be to feel comfortable.

This morning, amidst crying about the walk and a tree, we stopped at a hamburger stand on our way home from our walk. 11am I ordered my boys ice cream cones. The woman behind me looked at Jonah and said, “Is that your breakfast?”
After reading above, you can only imagine what I wanted to say to her.

A new Jonah

I have no idea what happened. Prior to the move, Jonah was horrible. He stopped trying to communicate, had tantrums and meltdowns multiple times a day, and lots of aggression.
The first night in the house, he started saying two word phrases. A week after moving, three word phrases. He had a two week break from therapy with the move, and he has been so happy, talkative, and calm. He tells me what he wants. Meltdowns are at an all all time low. And Jonah, the kid who has severe anxiety about being around other kids, was outside playing near the neighbor kids.
I’m left questioning if this new town drugs the water…because I don’t understand any of this. But I love it. This move was worth every single stressful moment because of what it brought me: Jonah. Don’t get me wrong, he still has many issues, and everything is not perfect, but the change I have seen in him has been amazing.