Lonely small town living

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.

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Having a bad day

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We have been having a bad day since Wednesday. Every little thing has been setting Jonah off. It was so bad he was even melting down over the type of diaper I put on him. He doesn’t want trucks or Mickey, he just wants bubbles…but I have no bubble diapers, and we are buried under multiple inches of snow and live 18 miles from the nearest store that carries bubble diapers. So I’m stuck. He’s stuck. And everyone is miserable.
I try to be a patient mom. I try to keep my cool and just roll with whatever life gives me, but by Thursday evening, I was running on empty.
Yesterday, when the day started with tears over types of diapers and not being able to tell me what he wanted, I made an executive decision. I can’t do this for four days straight.
This morning, I tried something new. I left my kid alone. I didn’t bother him. I put a movie on, gave I’m a bag of gram crackers and a Popsicle, and left the room. I made myself eggs, sat down and ate them with my one year old, and about an hour later, I heard the running of little feet. Jonah was out of gram crackers, and I braced myself for the meltdown that I assumed was going to ensue when I asked him to say and sign what he wanted, but it didn’t happen. I asked if he wanted more, and he said more. He repeated the words and the signs I requested, and was given a handful of gram crackers. He smiled, said bye, and ran back to watch his movie.
And that ended the four day long bad day. I think as a mom I have this tendency to try and fix things when they are wrong, and that works great with my other two boys, but what I have to learn and remember is that Jonah is different. He just needs me to back off and let him figure some things out. Lesson learned, good buddy. Lesson learned.

Mr. Bear must die

I know I shouldn’t have been laughing, but Jonah was hysterical today at speech therapy. C, his speech therapist, has a big stuffed bear that she tries to get Jonah to connect with. Every single time she pulls this bear out, Jonah gets mad. He doesn’t like the bear. In fact, he hates the bear. It is pretty obvious that his dislike of Mr. Bear runs deep by all the times he throws him on the ground, pushes him off chairs, and yells no and lays on the ground, but for some reason, C thought it would be a good idea to bring Mr. bear out today…for a birthday party!
Yes, that is correct. Today is Mr. Bear’s birthday.
When Jonah saw the bear, his face dropped to a sullen stare. I could tell he was annoyed, but C just kept going on and on about how special today was because it was Bear’s birthday. She had graham crackers, frosting, and sprinkles so they could make a birthday cake for Bear, and they were going to sing happy birthday! C’s excitement was intense. Jonah’s indifference was growing.
C passed out the plates and put a cracker on eat plate. Jonah, being the kind, caring boy he is, reached past Mr.Bear and stole his cracker. And when C laughed about it and gave Bear another cracker, Jonah decided he had enough. He stood up, walked around the table, and sat, with all his weight, on top of Mr. Bear, making sure to press his back into the back of the chair. Mr. Bear was smushed, and I giggled just a bit. C made a fuss about the bear and gave him a different chair to sit in. Jonah apparently didn’t find that appealing, so he took his crackers and went to stand in the corner.
C tried to engage Jonah, and thought if we sang happy birthday, that might work.
Jonah refused, and then took a toy crocodile, opened its mouth, and repeatedly hit Bear over the head with it yelling “bite.” Yup. That’s my kid. Jonah was having the crocodile bite Bear’s head, and all I could do was laugh because 1. He really wanted that crocodile to eat the bear. 2. He kept smiling up at C while he was doing it with a sly little grin. And 3. He was saying bite clearly.
An hour of therapy and Jonah said three words: no, cracker, and bite. Some might call that a wash, but here is what I saw. He knew the situation. He evaluated the situation. He knew he didn’t like what was being asked of him. He said no. When C didn’t listen to the no, he re-evaluated the situation and thought of a new solution. He told us what he wanted and didn’t want. And while he only said three words, I saw a lot of processing and follow through. And while I wish he would just like that stupid bear and play with it, I can’t blame him for wanting to play with much cooler toys, like pirate ships filled with animals.

Not good enough

I haven’t been fond of Jonah’s initial speech therapy since it began. Hs therapist gave me the impression that she didn’t know what she was doing from day one. I put up with it because Jonah needed it, but as therapy went on, I grew more upset with his therapist. She told me a few months back that Jonah is “just stubborn.” That was a significant blow. He is more than stubborn. Something is going on, and I felt like a professional should be able to see that.

When his doctor was concerned about his “red flags” she sent him for her own private evaluation in a bigger city. After an hour with that therapist, he was making more progress, using signs, and seemed less stressed out. This past Tuesday his initial therapist told me, “he will be all caught up by the time he turns three.” My stomach dropped. I did everything I could to contain my anger. Every day I wake up and hope for a miracle. I pray every night that I will wake up the next morning to a little boy who smiles and talks to me. But the reality of the situation is that it’s not going to happen. It’s not going to be that easy, and we are no where near the point where can an afford false hope like that. The thing that bothered me the most was that it seemed that the therapist actually believed it.

We left therapy and I was on the phone with my husband within seconds. Beyond furious, I drove us home and continued to rant and rave about the kind of treatment he is getting. And then it happened. The phone rang. Our pediatrician had received the evaluation from her private therapist and it was full of red flags for autism. She wanted to make sure that he was in the process of being screened.

So there I was, sitting at the table shocked. I have two therapists, one who has known my son for five months and can’t see a problem. Another who saw him for an hour and saw the child we have seen for half a year.

Two days of therapy with the old therapist. Two days of therapy with the new therapist. 4 days of speech therapy. 2 days of occupational therapy. That is what our schedule has looked like for the past three weeks. Yesterday, Jonah took my hand, led me into the bathroom, pointed at the changing table, and said, “change.” I asked him if he wanted me to change his diaper. He repeated diaper and then I put him up on the table. He didn’t fight me. He helped me change his diaper. He has never come to tell me that he needed or wanted a diaper change. Most of time, he fights diaper changes. I was so happy at his new words and compliance that I cried.

It’s hard for me to take Jonah to speech. As a mom, I always thougt I would be the one to teach my children. As a teacher, I always felt that I could do better than anyone else could with my own flesh and blood. And now, now I have to take Jonah to people who aren’t me to teach him things I should be able to teach him. I know I should see this as a humbling situation, but all I can think about is how I am failing him, failing being a mother. My husband tells me every day that I am not a failure, and how amazing I am, but it all falls on deaf ears when I sit in that therapy room and watch Jonah with his therapists. I know they are helping him. I know they are doing their job. I am so thankful for the progress that he is making and for all they do and try to do for him, but it just makes me feel like I’m not good enough.

Is a move in order?

Preschool is starting to become a word that I dread to hear. Our school district is wonderful, that’s what people told us when we bought this house. It is a wonderful, small district, if you have a child that doesn’t need help. There is no special education program, one speech therapist, and no help. But we have been assured that if Jonah needs more help than our district can offer, he will be bussed at no charge to us, to another district.

At no charge? Money. I don’t care about money. I don’t care that you can send him to a district almost thirty minutes away. That is not the school district we moved in to. That is not the school we chose. Maybe some of this is my need to control the situation because there is so much at this point that I can’t control, but it feels like more. Why should I have to send one of my three children to a different school? How will he make friends? Be involved in school activities?¬†How can I be at two schools at the same time? Why should I have to?

So now we are faced with the choice of leaving our house in search of a program that can help Jonah. I say there was a choice, but the reality of the matter is as soon as we found out about the lack of help Jonah would receive, our minds were already made up. How could I look Jonah in the eye and justify that our house is more important than him? I couldn’t. So this is something that is happening, whether we are ready or not.

After weeks of searching and researching districts, we finally have a list of four to choose from. The problem lies in the homes for sale. Our home now is a large, old farmhouse. We have four bedrooms and a huge yard. The houses in our price range barely make up half the size of our current house.

We have three children. All boys. Can I cut our house in half and still have room to raise these boys? Can I afford not to?

Our Journey

Many months ago, about the time Jonah, our middle son, hit eighteen months, we began to come to terms with the fact that something was slightly askew with his development. He watched everything and mimicked. His language development wasn’t going anywhere. He didn’t make good eye contact. And he didn’t enjoy playing with other children.

We went to his doctor, who at the time was a Physician’s Assistant. He told us to give him time. At his two year old check, we once again voiced our concerns. They were dismissed.

Now here we are, six months, two surgeries, and five months of therapy later, and my son still can not hold a conversation with me. We have since switched doctors, had Early Intervention screenings, began therapy, and had private evaluations. We are on what the professionals like to call, “The road to recovery.” But I am sitting at my kitchen table wondering if we’ve been left behind. Jonah’s vocabulary has grown from the ten words he knew and could say to a solid forty, but with the addition to words, we have encountered the loss of socialization, sensory problems, and more tantrums and outbursts.

Now we wait for more screenings and an opening through the Autism clinic for diagnostic evaluation.

This is my coping. My frustration. Me being honest about how I am feeling, because let’s face it, as a Mom, I’m supposed to be his crusader, his rock and I can’t waver publicly.

This is our journey to diagnosis. Our journey to speaking. Our journey to help Jonah.