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One Step at a Time

It’s been a little over a year since I updated this blog, mostly because I have been afraid to put into words what has been happening in our lives. This year has met us with great advancements, many failures, and even more tears, but we made it. Our house now looks like some kind of therapy room. We have a swing in the front room, a trampoline in the corner, sensory boxes on bookshelves, and more Legos than I can count.

But I miss our old house, our old neighborhood, and old friends. I miss our old church and Pastor. I miss being away from family and being someone who can get lost in the crowd. But this move has been good for our family, especially Jo, so I press on.

We have made new friends, have a new (really really old) house, and a massive backyard (just shy of an acre) to play. Jo’s school year was amazing. His teacher is the most kind, gentle, patient woman I think I have ever met. Even on the crazy days she met me with a smile. Jo’s team was built of the Special Education Director, Occupational Therapist, Speech Therapist, and his teacher. His initial IEP meeting was overwhelming and confusing, but I heard everything I needed to, so I walked away praying that these people knew what they were doing.

They did.

Jo is talking fluidly now. We can understand 98% of everything he says. He still has some pronunciation issues and uses the incorrect words at times, but I can live with that. OT worked with him on sensory activities, handwriting, and basic self care. He learned how to zip a coat! Speech worked with his teacher to help him socially, and we have seen great improvements.

Jo did so wonderfully during the school year that his team wanted to try him out in the Pre-K class, pulling him completely out of Special Education. I jumped at the opportunity. I felt like it would help him so much if he could just see what the other kids were doing during the school day. The idea was great. The reality was shattering.

Jo went from happy and adjusted to frantic and fearful. The kids were too noisy and too chaotic for him. His teacher even reported that the happy child who used to play on the playground was now squatting in the corner of the playground as far away from everyone as possible.

After a few more tries and some really awesome sensory inputs, he started to do better. So much better that at his final IEP meeting for the year his team recommended that he be placed full time in the Pre-K class instead of Special Ed next year.

And then summer break happened…and our world fell apart once again.

More meltdowns. More screaming. Loss of vocal regulation. More rigid. Refuses to leave the house. Not wanting to eat. Refusing to change clothes.High anxiety all the time. Isn’t summer over yet?

So here we are, July 9th, six days before he turns 4, slightly better…but mostly just different.

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Taking It Back

Today, while driving home from working out, it all became clear to me. I’m not quite sure how it happened or why it happened now, but it did, and it feels so good. Jonah has been having some amazingly wonderful days. Even his bad days haven’t been too horrible.
Thinking back to when this journey of our began, I used to cry every night. Jonah was so violent. He would punch me in the face and had almost no words. He would scream and grunt, and I saw no future for him. I couldn’t even imagine what tomorrow would hold for us, let alone ten years from now.
Now, Jonah loves. He smiles. He talks to us and tries to communicate. He imagines and dreams. He is a kid. And while he has his moments, they are manageable. We have completely rearranged our lives. We have bent over backwards. Our daily routine now centers on sensory activities, talking, and social integration, but it brought me my son back.
But all that has been clouded lately by one simple word: autism. My husband noticed that since the day of the diagnosis I have been itching. I now have rashes and feverishly scratch at my skin. It got so bad that I started screaming. And then my husband brought the timeline to my attention. I guess I didn’t realize how much Jonah’s diagnosis had affected me. I’m subconsciously ripping my skin off, and for what?
I’ve been so tired and scared that I’ve crawled into a little, snug autism hiding hole, but now I’m done.
As I drove home alone, radio blaring, wind blowing seamlessly through the fields, through my car, and then into another field, I started to breathe. I started to feel my heart beat again. I started to notice the growing corn and sprouting soy beans. And it felt so peaceful. Many call moments like these “clarity.” But I see more than just that. I felt the hand on my shoulder. I felt the voice of someone saying, “it will be okay.” God was with me in that car, just as he has been with me through this whole thing. And I used to know that. I used to believe that things could be “given” to God, but then real life happened, and somewhere in all the chaos, God was silenced.
I feel stronger today. I feel happier. I feel like the world is not going to crush me.
I ran in the house and took my family to the park, for an hour, just to play. We don’t play enough. We do therapy, drive to therapy, clean for therapy, do paperwork for therapy…say it clearly, hold this, rock in this, repeat this, play with this…
And we got lost.
Jonah turns three in 6 weeks. Early Intervention therapy ends the day before his birthday. In two weeks we will be having a meeting to discuss programs Jonah can be in and therapies we can start once Early Intervention ends.
We will be declining those services and therapies.
There is a month and a half between Jonah turning three and school starting. That month and a half is ours. We know how to work on his speech, OT, and social skills. We have been there through every therapy. We are professionals, but more than that, we are parents, and he is a child. And it is time to let him be just that. It’s time to enjoy my children, because I will never get these moments back.

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.

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.

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.

Please sleep

Dear Jonah,
Please sleep. Relax. Breathe deeply. Sleep for more than a few hours before crawling in my bed and waking me up.

Dear Jonah,
Please go back to sleep. It’s dark outside and I’m exhausted. You need rest. Please lay next to me, and go back to sleep.

Dear Jonah,
It’s 5am. Go back to sleep. The sun hasn’t made it way to our windows yet, and our town is still dreaming. You should be dreaming too. Please go back to sleep. Please be quiet so you don’t wake up your brothers. It’s too early for me to open my eyes and smile at you. Just lay in my arms and drift back to sleep.

Dear husband,
At 1:30 pm almost every day you go to work, and I lay our youngest son down for a nap, put a movie on for the other two boys, and pass out on the couch. Most days I drool on the couch pillow because I am so tired, and that’s why I never get the laundry done. Sorry.