When Jonah started Early Intervention, his team decided that he needed an hour session of speech therapy once a week and two days of developmental therapy a month.
That lasted two weeks.
I pushed the speech therapist to agree to an hour session twice a week.
Jonah made a tiny bit of progress in speech, but then his sensory issues started to magnify. So I pushed more. I took Jonah to his pediatrician and demanded more. She wrote him a referral for a private speech evaluation.
After that evaluation, I pushed more and got him two more days of speech added. Then I pushed for occupational therapy, which he now also gets twice a week.
Jonah’s week looks like this:
Monday- half hour of speech, half hour of occupational
Tuesday- hour of speech
Wednesday- half hour of speech, half hour of occupational
Thursday- hour of speech
Every other Friday- hour of developmental therapy
If I didn’t push, he would only be getting one day of speech therapy a week. How much progress would he have made? None. I can honestly say Jonah would have made no progress.
In 5 months of being on a two day schedule, Jonah made very minimal progress. Two weeks after we started the schedule above, we had a major breakthrough. Two weeks.
I’m sure some of the people I have spoken to have some choice words to say about me, but it’s worth it.
I decided long ago that no one knows my kids better than I do. And I swore to myself when we started to realize that Jonah needed intervention that I would do everything in my power to help him. So I decided to give everything a three month rule. If in three months I didn’t see progress, it was time for new ideas, more therapy, and a change. And now that we are seeing progress, I have to admit that I am thankful, because if this didn’t work, I have no clue where I would have pushed next.
I pray we are headed forward from here. I know the road is long, but I’ve seen what it can be like. I’ve seen what life can be like with a smiling, talking child, and that’s what I’m going to push for until I am dead.
You parked by my car in a parking lot at the doctor’s office. You were standing with one door open, organizing things in your back seat, and I’m sure you heard everything coming from my car, only a few spots away. I’m sure you turned to look when you heard Jonah screaming because he didn’t want to get in his car seat. I’m sure you heard me pleading with him, trying to explain things calmly, and then my pure and utter frustration as I closed the door and strapped my other child in. I’m not sure if you have children. I’m not sure if you knew that Jonah is a special kid. I’m not even sure you knew what the situation was. But after I seat belted my other son, went back to Jonah, forcibly held him down to get his seat belt on him, and closed the door with him kicking, screaming, and thrashing , you came over and simply said, “Hang in there” and smiled at me.
Thank you. Along with all the other things you probably didn’t know is another fact: I was ready to lose it. I was ready to call my husband crying and tell him that I can’t do this anymore. But those three simple words and that smile gave me a moment of connection that I have needed so badly. So thank you. You have no idea what you helped me do today.
Today is the day we picked up Jonah’s weighted vest. So far, so good.
Spaceship, our puppy who I am trying to train to be a sort of therapy dog for Jonah, has been working wonders for his meltdowns.
And that brings me to Jonah’s favorite pair of pajamas, and the toe sticking out of them. I guess I better get my needle and thread!
The last few weeks have been really hard for me. I’m not sure why, but I’ve been in a constant bad mood. I’m mad. I’m angry. I’m ready to start throwing library books or gram crackers at people just for looking my way. I feel like every person is watching us, staring at us, judging us when we are out in public. I know most people aren’t. I know that this is some part of my neurotic mommy meltdown, but dear Lord, I just want to start screaming.
I want to yell at the guy sitting in the waiting room of therapy who keeps shaking his head. I want to throw stuffed gorillas at the mother at the library who let her kid be a little jerk to Jonah. I want to run through the grocery store and start throwing boxes of cereal at the women who find the need to follow us with their eyes, like a leg is sticking out of my forehead. I want to throw a hamburger at the woman who felt the need to give us dirty looks because Jonah was wearing pajama pants in the middle of the day. You know why he was wearing those pants? Because after thirteen minutes of a screaming, kicking fit about wearing pants that day, Jonah picked out a pair of Lightening McQueen pajama pants. He calmed down, put them on, and then smiled and took a deep breath. Thirteen minutes over pants. So yes, I let my kid wear clean pajama pants to go out in public, because I’m tired and those are the pants my son, who needs extra help, extra compassion, chose to wear.
I think I need a nap.
Jonah will not take his coat off in public. It NEVER comes off when we leave our house. One of the speech therapists asked if we had ever considered getting him a weighted vest. Prior to this, I had never even known something like that existed. The research began and hopefully sometime next week Jonah will have his new Lightening McQueen weighted vest. His OT is very excited to see how he does once we introduce the vest. We are too.
I wish there was a book I could check out of he he library called, “So They Think Your Kid has Autism.” There is so much information out there with tricks and helpful hints for how to get kids who need extra help to do basic things, but until you get a diagnosis, it’s hidden. I’m not sure Jonah has autism. I’m really not. But I don’t know what is going on, so it is hard to ask for helpful tips when you don’t know what to ask for. My husband’s aunt is a teacher’s aide in a preschool room. It wasn’t until this past weekend when we told her that Jonah was going to the autism diagnostic clinic that we found out that she is actually a teacher’s aide in an autistic preschool room! In an hour she gave us more helpful tips on how to get him calmed down, focused, etc. than anyone has ever given us. Since seeing her on Saturday, Jonah has been in the best mood, and I’m sure it has everything to do with the tips she gave us. But it makes me wonder, what other information and help is out there that we don’t know about? And what if it isn’t autism? What if it is something else and there is even more information out there on ways to help Jonah? I’m dying for a diagnosis. Jonah, on the other hand, doesn’t care about what the doctors or therapists say, he just cares about that sucker or sticker. And that is something that I have to remember. He doesn’t care one way or the other as long as he leaves with a Batman sticker on his chest and sucker in his mouth. I wish it were that simple for me too. Maybe one day it will be.
We have been in contact with The Autism Program of Illinois to see if he can get diagnosed quicker through them. I would prefer to go through Easter Seals, but waiting until May or June is just something I really don’t want to do. The Autism Program said they could get him into clinic way before Easter Seals, but they don’t take our insurance. They would give us a 90% discount, which means we would pay about $250 for the diagnostic clinic, and both my husband and I felt that was a small price to pay for a quicker answer. But then other people felt the need to give us their opinions on the matter. I am really starting to become offended by women and their comments. “I know what you are going through, because my son was a late talker. I wouldn’t pay the money, I would just wait for Easter seals.”
No. Just no. First of all, what is going on with Jonah is more than just “late talking” and second of all, don’t try to belittle my journey with my son. I’ve quit my job to get Jonah to therapy. I drive him over an hour to therapy twice a week and half an hour to therapy twice a week. My husband and I see one another for an hour everyday day, and that is if we are lucky. I have two other children who I am trying to raise and teach and love all while trying to balance my sanity. So no. You don’t know what I am going through, and I’m glad you don’t because I really wouldn’t wish this on my worst enemy, but it is what it is, and we do what we have to do to survive and thrive. But comments like that drive me insane. I would do anything for my family. Anything. $250 seems like nothing when I think about what I could be walking out of that clinic with. I could have answers. I could have more help. I could find Jonah.
I wish I knew if Jonah is on the autism spectrum or if something else is going on. In all reality, it doesn’t matter either way, but not knowing makes every day more frustrating. I want something to blame. I want something to focus on, other than not knowing. I want to be able to look at staring people in the grocery store and say, “He has ASD, so please stop looking at me like a bad parent and him a bad child.”
I want to know so I can fix it, as impossible as that may be.
It’s lonely being the parent of a child as amazing as Jonah. He doesn’t want to play with other children, so play dates almost never go well. He doesn’t do well in new environments, so going to other people’s houses doesn’t usually go well. And this ton of snow we are buried under prevents us from visiting the park.
I truly wish there was a support group for children with ASD, or speech delays, or sensory issues around here. I wish there was somewhere I could take him consistently, where he would know the people and feel comfortable enough being there.
Maybe I just miss having friends. I feel secluded out here, and not because Jonah. We live three hours from where I grew up. Three hours from all my friends and family, and making friends in this small town has not been easy. Every day it is the same people: kids, husband (when he isn’t at work), and me. I love this family. I love these kids and my husband, but I can’t help feeling lonely most of the time.
I just want one day where I can sip coffee in the kitchen, talking to another adult, while our children play nicely in the other room, so I can pretend, even if it is only for a few minutes, that everything is going to be okay.