Tag Archives: autism

Starting Over…Again

When this blog started it was about my son’s autism and how I attempted to deal with it all. We searched and searched for a diagnosis, then therapies, then breakthroughs. Years later, here we are. We have a six year old child who is amazingly bright, hilariously funny, and above all, happy. We have sacrificed a lot. We have given everything we could. Every single member of this family has given a lot to get to this point, and I think we can all agree that it was well worth it. Our life looks so different now, and maybe that is why I decided to start blogging again. I never imagined my life would look the way it does, and at the same time there is so much that I still need to change.

Who are we now?

We are a small town family who digs holes, hunt frogs, and seek out dirt like it’s air. We’ve added two dogs, two cats, 7 chickens, and 2 ducks to our family. My three boys all have their own unique gifts, which they use to support one another in whatever mischief they can find. We are also now homeschoolers! That’s right. We walked away from public school and started our homeschooling journey in October of last year.

And while this has been an awesome ride, I have learned a lot about my children and myself. The first thing I learned?

1. My weight is not my friend, and as I watch my boys grow, I am starting to worry about their health as well. I have struggled with my weight my entire life, and I want to empower my children to make healthy choices.

2.School is hard, but public school is nearly impossible. My children (8,6, and 4) had to deal with issues and struggles that I never would have expected them to be faced with at such a young age. Their self confidence, self worth, and creativity after just a few short years was gone. In light of those issues (and many others) we decided to homeschool. But you know what? Homeschooling is hard! Homeschooling is so hard that some days I cry in the shower because I feel like I am failing my children. But the truth of the matter is that they are happier, thriving, and growing in so many ways it is hard to track.

3. Autism is a struggle, but the payoff is amazing. We still have daily battles, but they don’t consume us like they used to. And while certain things may be harder than others, I thank God every day for this child and his gift. He sees the world in a way that no one else does, and I am lucky enough that he shares his insight with me.

4. My two other children need way more than love and attention that I thought. I’ve spent so much time over the past couple of years with therapies and drills to get Jo to progress that I sometimes forgot that I have two other children who need me just as much as he does. That’s hard. It is hard to admit that I gave one child more, but it is even harder to watch the other who fight for attention. We have come a long way with splitting up attention, but we still have so much further to go.

5. I am, and will always be, a work in progress. I am a hot mess. I’m the mom in gym shorts, a t-shirt, no make-up, and frizzy hair who spouts off dirty jokes in hushed whispers to other moms while the kids play at the playground. I read trashy romance novels just as much as I read Margaret Atwood. I will never have all my eggs in basket or row, and if I am going to be completely honest, most of my eggs are broken because my children drop them in the lawn after collecting them from the chicken coop. I’m awkward, overweight, and full of sarcasm. I am also so completely awesome. I know this to be true because my kids tell me every single day.

So, this is where we begin. This is my gift to you: our crazy homeschooling, autism, sensory seeking, weight loss, healthier lifestyle, boys will be crazy-mischief-maker journey! I hope you enjoy it as much as I do.

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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.

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.

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?

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.

Get me out of these boxes!

Our move date was March 22nd. We are still in the old house, and surrounded by boxes! Everything is on hold. Everything. Including Early Intervention therapy, which has been transferred to our new district, where we are not. In hindsight, I should have waited until we actually were in the new house to call our caseworker and inform her of the move, but I didn’t want there to be a lapse in therapy. Well, we are now starting week one without therapy, and I have to say, it’s kinda nice. No rushing Jonah places every morning, no making sure everyone is dressed in the morning, no diaper bags and weighted vests. It’s just us, in our pajamas, hanging out. And if it weren’t for all these boxes surrounding me, life would be pretty perfect.
I had a wonderful chat with the Early Childhood department at the new school district this morning, and Jonah is all set up for his evaluation on May 1st. She reassured me that it would be a no pressure situation, and I could tell Jonah we were just going to play with some people. I was my normal, polite self on the phone, but in my head I was laughing. We have been through so many evaluations that this is routine for Jonah.
The past few weeks have brought us much talking, but with that talking has come much hitting, screaming, and throwing toys. It has gotten so bad that my five year old told me, while crying, “Jonah is always hurting me. Anytime I touch something he wants, he hits me or throws toys at me.” We had a talk about how Jonah still needed our help and love, and how mommy was sorry that I wasn’t there to stop Jonah’s behavior. That’s my fail. I should have been right there to stop it. My new mission is to be Jonah’s little shadow, because how can I correct the behavior if I’m not there to intervene?