We’ve got to make some changes

I’ve been so preoccupied with my children that I’ve completely neglected myself and my marriage. I stepped on the scale a few days ago and was shocked by the number that flashed before my eyes.
320 lbs
How did I let it get this bad? Why did I let it get this bad? I miss my husband. I miss cooking real food. I miss working out at the YMCA. But now, I’m just embarrassed. How do I join a gym now? How do I sweat and swear at myself in my head while in the back of my mind knowing I’m needed at home? I was already so self conscious about people judging me before, now…I’m feeling like I can’t even bring myself to walk into a gym and sign up.
I’m so tired, and I’m tired if being tired. I’m tired of fast food, and take out, and junk. I’m tired of autism. I’m tired of therapy. I’m tired of being so tired I can’t even enjoy quiet, alone time with my husband.
I never thought I would say this, but I’m tired of being a mom. I just want to crawl in bed, hide under the covers, and be left alone. And at the same time, I want to scream at everyone.
My oldest son had his first baseball game yesterday. Jonah and Luke were horrible. So there we were, trying to watch the first baseball game while Jonah and Luke cried, wriggled, screamed, and threw fits. And then it happened. My son was up to bat. Jonah and Luke settled, and we all watched. It was wonderful…until two kids in he he field started laughing at him for missing the pitches. My son is five. This is a league for five and six year olds. So you can imagine my fury while my son is being made fun of and laughed at. And that’s when I realized that I’m fucked.
If I can’t even protect Jude, who is the most social, happy, peaceful child in the world, how the hell am I going to protect Jonah? I am so sick of everyone. I’m sick of other kids who are mean, of parents who do nothing, and of being overweight.
Jonah’s IEP meeting was this morning and I guess I am happy with the results. He will be in the afternoon preschool for special education children. He will also get speech and OT. And his teacher took two pages worth of notes about him. It sounds good. They are even going to incorporate a hiding spot in the room for Jonah to go to in the event he becomes overwhelmed. I was a little surprised by the fact that the team had already written goals without me, explained what their goals were, and then asked me to sign…without reading any of the information in the packets, evaluations, or goals for myself.
I signed it. Mainly because they said I could change anything at any time. But also because I just want to be done with all this. I’m putting my faith in the school district, and I hope I’m not making a mistake in doing that. I just want him to go to school, be with other kids, and have fun. I’m so tired of everyone correcting his words, trying different sensory inputs, and pushing him. I just want to let him be a kid. Let him line up his cars. Let him watch movies. Let him run around in nothing but a diaper, doing whatever he wants because he is a kid. Not everything has to have a purpose. Some things should just be fun.

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The Zoo and All Things Red

I can’t even thoroughly explain in words how good Jonah’s behavior was at the zoo yesterday. He walked holding hands. He listened. He was calm when walking, and excited when seeing the animals. He seemed very in control of his own movements and actions. The only mishap we had was when he was done seeing the giraffes and started to walk to the next exhibit. My husband went chasing after him, and brought him back with no tantrums. We explained that he couldn’t walk away like that, and Jonah said, “all done giraffe.” And we continued on. It was amazing.
Well, I should clarify, it was amazing until we stopped to get a snack. For the past week I’ve been slowly tweaking Jonah’s already dwindling food choices. I took out all the junk, all the processed food, all the sugar. Which left us with: fruit! Jonah absolutely loves fruit, so this was not an issue.
Since starting this, he has tried two new foods. Which is MASSIVE for Jonah.
So yesterday, my husband went into the zoo food area, and ordered the kids slushies, by the time I got up to the counter, my only reaction was “What the…” But it was too late. He had forgotten. The kids had already seen them. And the guy was asking for his money. I figured this couldn’t do too much damage.
Oh Lordy, I was wrong. Within fifteen minutes of drinking the red slushy, Jonah was more fidgety. Almost immediately after leaving the food place, Jonah took off running. The rest of the time at the zoo, he argued about holding hands, his speech wasn’t as intelligible, and he seemed to be all over the place.
Was it the red dye? The sugar? Both?
Whatever it was, it took Jonah 4.5 hours to go to sleep.
I think it is safe to say we will be sticking with our new diet.

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.