Autism & ADHD

I have questioned this post and what to include in it over and over. This blog has always been about our family and, right now, this is something greatly impacting our family and we wanted to share. We also want to share with family and friends so that there is hopefully a greater understanding. AND we wanted to share because we are not ashamed or embarrassed by either of these diagnoses.

Last week, Jacob and I spent some time in Salt Lake at a very long awaited appointment. In this appointment, Jacob was diagnosed with high-functioning autism as well as ADHD.

This post is going to be lengthy. It’s going to be lengthy because our “journey” to this diagnosis has felt very long and we want to share our story in hopes of sharing some lessons we have learned – so maybe others do not have to go through the same.

One Part of Jacob’s Story

I want to make it really clear that most of what I relate about Jacob in this section, is only one part of him. He is a tremendously sweet little boy and we love him very much.

Jacob was the easiest baby. He came into the world just content. Reading my journals of him as a baby that is the word that comes across again and again. He never really showed much emotion either way – he wasn’t an overly happy baby but he hardly ever fussed either. He was just content.

Around eight months we started to notice Jacob making movements with his hands. It was pretty frequent, especially when he was excited and we just thought it was a cute Jacob-ism.

It didn’t take long though until people {mostly strangers} started to ask questions about it. I knew they were probing for information but we just kind of ignored it. There were other early signs as well. He had a difficult time making and keeping eye contact and was late in other developmental milestones.

But around eighteen months it was like something switched with Jacob. He went from being this content little guy, to being on a steep emotional roller coaster.

I was in the midst of a difficult pregnancy and I just thought we were entering the “terrible twos” a little early. Things got rough quickly. Jacob’s moods were intense and switched quickly. At first, we joked that this was just balancing things out since he was such an “easy” baby.

By the time Jacob was about four, doubts really started to creep in though. The last several years with him had been difficult and I had been assured that it was just “terrible twos” followed by “three-nager” stages. But things were not getting any better. If anything, they felt like they were getting worse. The tantrums were only getting bigger, and since he was getting bigger, it was harder to handle.

That time in our family life was just rough. There were a lot of stressors and I thought maybe this was just a response to all of those stressors. But I was doing most of it alone.

Mark was working two and a half hours away at the time (so I was almost always alone), we were living in a new place, Sarah was a toddler, and I was having another difficult pregnancy with Ben. I just kept thinking, “once things settle down, he will be able to settle down.”

But they didn’t. We ended up moving again and Jacob’s behavior only continued to be difficult.

He would struggle through these “moments” as we liked to call them – but they weren’t really moments at all. Sometimes, his tantrums would last well over an hour. Sometimes, we only got a couple minutes in between tantrums. I never really knew what kind of day we were going to have.

Finally, when Jacob was six, I decided to lay out all of my concerns to our pediatrician. I had mentioned concerns before to our various pediatricians, but they had always been quickly dismissed or I was recommended parenting books.

I loved our pediatrician at the time, but most of my concerns were dismissed again. He did think it was worth looking into ADHD but he said he needed to have more than just my perspective on the situation. Since we homeschool {and he was only six}, there weren’t too many other adults {outside of family} that he spent time with.

I asked his piano teacher at the time, as well as his Primary teachers at our church, but they were quite upset when I asked them to fill out the forms. They told me they didn’t like how people over medicate their children, especially when it is more a problem with bad parenting.

Finally, one of them filled out the forms but made it very clear in her response that she did not agree.

I didn’t even bother turning in the forms – knowing that they showed the opposite of what I had said.

After that we just continued on. Jacob’s behavior remained mostly the same. I don’t want to get into too many specifics on behavior, but it was difficult.

Finally, in January, I decided to set up an appointment to address our concerns with our new pediatrician here in Wyoming. At the end of our appointment, he told me that he was not comfortable moving forward with his case, and referred us to a pediatrician in Salt Lake City with a background in developmental behavior.

We immediately called to set up an appointment and were put on a waiting list. Finally, this last week we were able to meet with her.

My Perspective

No one but my Heavenly Father will ever know the thoughts and feelings of my heart over the last several years of my life.

All I’ve ever wanted to be (truly) is a wife and mother. If that is all that I am remembered for, I am perfectly okay with that. My worth as an individual has become very tied up with how I am feeling I am doing as a mother.

In the very rare times where I confided in others {outside of Mark} about my concerns with Jacob I felt quickly dismissed about it. I realize that nobody wants to say they think anything is wrong with another person’s child {I wouldn’t either!} but it only made my feelings of failure as a mother deepen.

Asking our pediatricians for help was really difficult for me. It took me a long time to admit to myself that maybe there was a problem. So then opening up to a pediatrician was even harder. And then having those problems dismissed really crippled my confidence as a mother.

And the experience with other members of my community in filling out those forms was also very difficult. I felt very defeated and I think it left a scar on me.

Thoughts of: If I was a better mother, Jacob wouldn’t have these problems. If I was a better mother, Jacob would know how to feel empathy. If I was a better mother ____ {insert so many other concerns}.

It is really hard to watch Jacob in social situations. It crushes your spirit to watch your son be teased and made fun of. And I can’t decide if it makes it worse or better, but Jacob doesn’t even know it’s happening. I have had to witness events where he is getting made fun of and afterwards ask him about it to find out he thinks those children are his friends.

A couple weeks ago we were talking as a family about burdens. And Jacob matter-of-factly commented: I don’t have any friends, so that’s a burden. Crushing. It honestly breaks my heart to write that out but it was nothing to hearing it. Jacob has never been asked over to play at someone’s house. And he’s starting to notice that he is different. And that is maybe the most difficult of all.

It’s been hard. Really hard.

Where we are at NOW

Our pediatrician in Salt Lake was an absolute answer to prayer. She is so kind and compassionate and I will forever be grateful for her. We are on a steep learning curve right now, and my “to do” list is intense moving forward.

This is what we know of autism:

“Autism is a brain disorder that makes it hard for a person to communicate and interact with others. A child is born with autism, or with the tendency to develop it. And unfortunately, right now it’s not something you can prevent.

Autism is the most common of a group of related disorders called autistic spectrum disorders (ASDs)…The reason ASDs are called “spectrum” disorders is that they affect people differently and to different degrees. Symptoms and behaviors can vary, ranging from mild to severe. For this reason, treatment plans are highly individualized.”

There is no cure for autism and it will be something that Jacob will have to navigate his entire life. Jacob needs to have more intense testing to find out what his specific needs are, as well as therapy, in various forms.

This is what we know about ADHD:

“ADHD is a biological disorder that affects how the brain functions and develops. People with ADHD have trouble paying attention, sitting still, or controlling their behavior.

Many people have behaviors that are like ADHD symptoms, especially children. The difference with ADHD is that these symptoms are chronic (long lasting) and they interfere with daily life. For example, people with ADHD often have trouble at school or work. They may also struggle to learn from past mistakes or predict how their choices will affect the future. Their personal relationships can suffer. And as a result, they may feel anxious, unsure of themselves, and depressed.

ADHD is a serious condition. Right now, there’s no cure for ADHD.”

We are having a video conference with her pediatrician soon to discuss treatment plans to help manage his ADHD.

These two conditions {I am not sure what I am supposed to call them yet} are often tied to one another. It is important to manage both as well as we can because they can highly influence one another.

Thoughts Moving Forward

When we left Jacob’s appointment I thought I just couldn’t think about it or I would fall apart. There was nothing surprising really about his diagnosis {as I said we had had suspicions for years} but it is different hearing it be confirmed.

Jacob and I spent the rest of the day together – just us. We went out to lunch, did some shopping, and just talked. It was wonderful.

I fully intended on “falling apart” when we got home. I put on a movie for the kids and opened up the mountain of paperwork, and brochures, and resources I had been given.

And a tender mercy happened. All I felt was peace.

It was like this: All of Jacob’s life I felt like there was a big piece of the puzzle missing. But everyone told me I was wrong. That I was just looking for something that wasn’t there. And all of a sudden, I learned that YES there was a piece of the puzzle missing. And, in fact, there is a whole other section that I didn’t even know about.

As strange as it may sound, it’s actually been very comforting. I am definitely not a perfect mother, but Jacob’s struggles are not because I am an incompetent mother. It’s just who he is. It doesn’t mean we can’t do our best moving forward to give him as many skills to help him succeed. But it’s no ones fault.

If there is something I have learned throughout all this, it’s that there is something powerful in being a mother. You know your children. If something doesn’t feel right, keep pushing it. I wish I had the strength to push harder years ago. But I know there is a plan for Jacob and for our family moving forward.

As I said earlier, we are on a steep learning curve. There is a lot that needs to happen the next couple months, and a lot that will just become our new normal. We are trying to navigate it all and find out what’s best for Jacob and for our family as a whole.

When Jacob was only a couple weeks old, I remember holding him in his room in the middle of the night, and having a powerful spiritual experience. I knew that Jacob was a child of our Heavenly Father. That I was holding someone so close to heaven and so loved. It’s been an experience that has stayed with me strongly over the years. Through all of the tears and all of the doubts, I have always known this.

I love my Jacob. He has something great to offer this world. I pray every day that he can find a friend. Just one friend. I pray that he can have that experience that I had – and know who he is and how much he is loved.