yarnfreedom

[yarnfreedom]

Worry for Dayton - Post 5

Dayton, my perfect sweet baby... I don’t have the words to convey my worries for him.

He’s 18 months old, and his pediatrician said he has the communication skills of a 9-month-old. He has no words. He barely responds to his name. He waves to command most of the time, but he doesn’t point or wave independently. Also, he does this thing where he sits and rocks his head and body forward and backward, bouncing off the object behind him, which usually is the couch.

Doc ordered a lead level and a CBC, both of which were normal, no lead poisoning, no anemia or malnutrition. He did a standard hearing test, which was inconclusive. Unsure if he just lost interest or if he is legitimately having trouble hearing. Audiologist sent a suggestion for a BAER test which would be much more definitive. We have Dayton’s 18 month well check coming up in a few weeks, I’ll ask the doc then if it’s something she wants to order.

Tommy hadn’t been definitively diagnosed with autism when my husband and I were conceiving Dayton. We just thought he was a little delayed but he would catch up soon and be normal. We didn’t know that when you have one child diagnosed with autism, the chances of your next child being autistic are something like 20%.

Well, at least I know the course of appointments on the road to a diagnosis of autism. I hope for Dayton’s sake that it isn’t autism.

[yarnfreedom]

Stay-At-Home Orders - Post 4

I am an RN at a local hospital and I’ve been working on the Covid Unit for about a month and a half, and then about two weeks ago I finally returned to my home unit. Can’t tell you how exhausting and stressful it is to work as a nurse during a pandemic.

I feel terrible for Tommy. There’s no way to help him understand that all his favorite places are closed and we can’t go there. Michigan and Ohio are just now starting to ease their restrictions, but our local parks in Michigan are still closed and Tommy’s favorite place, Sylvania Playland, is still closed in Ohio.

Tommy loves going places, so being stuck inside with his favorite places closed was brutal on him in the beginning. He slowly adapted, but not without a few meltdowns. Now he knows that we will take him along for the ride when we go to pick up food from restaurants, so he’s always trying to make us order food. “Are you ahh hungry? Are you ahh hungry? Are you ahh hungry? Are you ahh hungry?” He will repeat that over and over while we are ordering, and he asks for the various restaurants, trying to get us to order. He calls Applebee’s “Apples”, it’s hilarious. 😂

We try to play outside when we can, but the weather and the temperatures haven’t always been the most cooperative. Tommy doesn’t understand when it’s too cold outside that we can’t play. He doesn’t seem to notice when he’s cold anyways. I sure hope he grows out of that, because I would hate for him to be in danger of hypothermia.

I can’t wait for when we can finally go to Sylvania Playland. Tommy is going to be so excited once we can go!

It’s been tough trying to keep Tommy entertained indoors without resorting to the TV too much. He likes to paint and he loves his marble runs. I keep trying to encourage him to go play with any one of his ten thousand toys that are in his room. He doesn’t understand that sometimes the grownups need time to do their own thing, so he’s always doing something attention-seeking when my husband and I are trying to relax for a short bit. He doesn’t understand the idea of “Go play by yourself.” Thankfully since Dayton has been getting bigger and more coordinated (he’s 16 months now), Tommy has been able to play a bit more with him. Some of that involves troublemaking, such as egging Dayton on to play in the dog water bowl! I knew those two would grow to be thick as thieves and troublemakers galore.

Well, it’s getting to be about lunch time now. Tommy will start asking me if I’m hungry soon, so I better decide what’s for lunch. More later.

[yarnfreedom]

Jealousy - Post 3

We live in Michigan, but all of Tommy’s therapy and appointments are in Ohio, so I have to do a lot of driving. While out driving around, I see lots of billboards advertising for preschool. “Register your child today!”

That’s where I get a pang of jealousy in my gut. Yeah, sign your kid up today, if they’re not autistic. The minute that autism comes into the conversation, everyone heads for the hills.

Tommy’s regular pediatrician is reluctant to do anything with him now that he’s diagnosed autistic. I had to fight to get them to just do his regular vaccines and a basic checkup so he can continue going to daycare.

His developmental pediatrician retired and I’ve had a hell of a time trying to find a new one in the area. No doctors seem to know of any, and I Google searched and found one in the Mercy health system but that one doesn’t do autistic kids. Ugh.

I hate when I hear parents complaining about how their four-year-old won’t shut up. That’s where I get really bad jealousy, because Tommy can’t even engage in a yes or no conversation. I want to shake these people and tell them how lucky they are that their kid can talk to them.

I would do anything to just have one day where Tommy could talk and be a normal kid. I’d find out everything about him, what his favorite color is, what his favorite food is, everything.

Parents of normal kids just don’t realize how lucky they are.

[yarnfreedom]

Speech and Speech Therapy - Post 2

Autism spectrum disorder (ASD) affects people to varying degrees, that’s why it’s called a spectrum disorder. Some autistic kiddos are nonverbal, which means they don’t talk at all.

Tommy communicates using one or two words when he’s telling us what he wants or needs. “Potty” “Cereal” “Orange juice” “Shoes go-go” (when he wants to go somewhere) “Get dressed” “Mmm hungry” (sometimes, a lot of times we have to guess that he’s hungry)

Tommy has echolalia, which means he tends to imitate what he hears. This makes it difficult to determine if he actually wants something, or if he’s just repeating after us. It has been getting better and better with the help of speech therapy thankfully! A lot of the time now he will actually choose between two options which has made life a bit easier.

Poor little guy gets frustrated easily because he can’t communicate well. If he doesn’t understand instructions, he tends to get upset and just yell the instructions back at us.

I can’t tell you how helpful speech therapy has been. Aside from the speech therapist being awesome and getting us started on the road to his diagnosis, that is. The difference in his expressive speech before we started and now is like night and day! He’s always been good at naming objects and he learned his colors, letters, and numbers very early. Speech therapy is helping him understand action words, and we’re even starting to scratch the surface on identifying and naming emotions. He can name emotions if he sees a picture, but it’s been a major struggle trying to get him to label the emotion when he himself is feeling it.

Tommy has an excellent memory and he is a talented repeater. He likes singing songs, he has an amazing song memory. Right now his obsession is this one silly kids song. It goes, “Do you like ____?” Fill in the blank with a food item. Then it goes yes I do yes I do. Then it goes do you like___? Fill in another food item. Then it goes yes I do yes I do. Then it goes do you like (put the two food items together here)? No I don’t, yucky! He likes making up different things for the blanks, his favorite goes do you like corn? Do you like pizza? Do you like corn pizza? No I don’t yucky!! I also witnessed him singing do you want to build a snowman to our pet snake after he knocked on his tank. 😂

He’s been good at using the phrase “All done” to tell us when he’s done eating or drinking something. Just now he told me “All done orange juice” and gave me his empty cup. We like to offer him bites from our plate so we’ll say “Want some?” He will come up to us and repeat this phrase when he sees we have something yummy that we didn’t offer him. I was just eating toast with Nutella on it, and apparently he wanted some, so he came up to me and said “Want some?” while looking at my toast.

His memory is truly incredible. He loves Paw Patrol now, so when he’s playing with the play sets and action figures he will repeat full lines from the show.

Sometimes when he’s trying to communicate, it just comes out as a garbled jumble. We try to get him to repeat it, and it’ll still come out the same, and then he’s getting frustrated from having to say it more than once. Sometimes we just have to give up, I’ll tell Tommy “I’m sorry buddy, but I don’t know what you’re saying.” Those are the times I really hate, when I can’t figure out what he wants.

Speech therapy is an ongoing process for us. We had to take a break for several months because I couldn’t afford the self pay option since my insurance wasn’t covering the therapy. But after spending three hours on the phone talking to five different people, we figured out that there’s a certain “diagnosis code” (it’s a medical billing thing) that my insurance WILL cover. I had to get Tommy’s pediatrician to write a new order for speech therapy and occupational therapy with this certain diagnosis code as the primary one. But now that it’s been done, my insurance will cover the therapy now, so we’ll be resuming speech therapy starting next week. I’m excited, because Tommy’s speech development has stalled, so I’m looking forward to helping his speech improve.

[yarnfreedom]

First post. Tommy is four, and he has autism spectrum disorder. Guess I’ll take you back to where it all began, considering my son is four now.

But where exactly did it all begin?

Tommy is our first child. We have another boy who just turned one, but yeah, Tommy is our oldest and first. My husband and I had never had kids before. We didn’t know what the hell we were doing.

I used to laugh when Tommy would get stuck in what I called a “time loop”. He would repeat the same action or sequence of actions over and over and over and over and over again.

“What? Tommy is supposed to be talking by now? But people always say boys are late to speech.”

Tommy was very late to start talking. But we thought it was normal, since he was our only child at the time and he didn’t have any older siblings to emulate. His speech was also very slowwwwwww to develop or make any progress.

Our pediatrician wrote orders for speech therapy. I’m so thankful that the speech therapist had a clue what was going on and knew what Tommy needed, because I sure as hell didn’t. She suggested that we get orders for occupational therapy and a referral to a developmental pediatrician.

That kicked off a flurry of appointments for about three months. The developmental pediatrician told us to get a psych eval for Tommy, so we did that and got referred further up the chain for psych testing and appointments with the kiddo psychologist. I can’t tell you how many paper questionnaires I filled out about Tommy at the many appointments I went to. They asked about how often does your kid do this, does he like repetitive activities, does he have food issues, color issues, sound issues etc. It felt like it went on and on forever, all these questionnaires and verbal interviews. It got very very VERY tiresome.

Then came the day we had (yet another) appointment with the developmental pediatrician. It was a very grey, dark cloudy day, with rain falling straight down and splattering hard on the parking lot asphalt. That was the day that I first heard the words, “We think your son has autism.” I could hear the words echo in my head as my mind went sideways. It literally felt like my body stayed rooted sitting in the chair and my mind got knocked sideways out of my head and just kept going.

Autism. The word struck a deep fear in my heart.

The testing was completed and the diagnosis became official about a month and a half later.

I’m a registered nurse, but I take care of adults on a step down unit. I’ve never had kids as patients. The kiddo clinical psychologist gave us the official diagnosis and a list of recommendations for what to do next, like it was easy and clear cut. Little did I know that NOTHING I was gonna try to do for Tommy would be easy or clear cut.