Tuesday, February 7, 2012

Hard to swallow

Yesterday West was diagnosed with aspergers syndrome, and the doctor told us that most likely Jack has it as well. We only took West to the psychologists, but he asked about our other children. We were told that aspergers is inherited, and is more common in boys than girls, and if one of your boys has it, then more than likely your others will too. Aspergers is an autism spectrum disorder, that is characterized by significant difficulties in social interaction, and repetitive patterns of behavior and interests.

The symptoms West has:
*Easily frustrated- when West tries to do anything and it does not go his way, he completely melts down, sobs, cries, and he can't be comforted. I try to hold him and he just wants down.
*West hates change, he just can't handle it. When I want him to do something other than what he is doing he completely melts down.
*Taking him anywhere is a chore, I never know how long he will last. I honestly can't remember the last time I took him to the store without him throwing a huge tantrum. I dread taking him anywhere, even though I want too.
*West is very anxious in social situations, whenever we go to the mall to play, he basically just sits on my lap, I can tell he is very uncomfortable. When he first entered nursery he sat on the nursery leaders lap for 4 months, before he would get down and play.
*He has a very hard time looking people in the eyes, again very uncomfortable for him.
*When he plays with a toy he is very focused and it is hard to pull him away.
*Rocks when he is angry or frustrated.
*He hates light touch.
*Wants to play by himself, and there is only one specific way to play with each toy. He will line his toys up and if they are touched by anymore, the world has ended.

Jack exhibits a lot of those qualities, but since he talked early and interacts really well with others, I never ever even thought that he had any problems, especially aspergers. When the psychologists said he probably did I felt like I had been punched in the stomach.

For a while Aaron and I had known that there was something different with West, but we were not quite sure what it was, but I never suspected anything with Jack. After the psychologists explained things to us, a lot of Jacks actions, and melt downs seemed to fit as well. Anytime someone touches his toys he dies, and I can't calm him down. He wants me to play with him, but only a specific way. And apparently a lot of aspergers kids talk early, and are really smart. But not only do they talk early, they have one-sided conversations, and tend to be up in your face, which describes Jack perfectly.

I knew that West was having problems, but not having any idea that Jack did, really hit me hard. My boys have been really hard, but I thought for the most part that they were just being boys. I have wondered what I was doing wrong, why don't they just understand me, and listen. Most days I am at my wits end, and I hate to say it, but most days I lose it with them. I am a very patient person, and I could just not understand where my patients had gone. Now knowing that there has been something else at work kind of out of my control and helped.

We are going to be putting West into a program for kids with aspergers, and looking at getting him into a special pre-k that starts at age three. We were told that if we start early, and work with our boys, that they should be able to go to normal elementary schools, and will be able to adjust. They will have aspergers their whole life, but we can manage their symptoms, and they should be able to live normal lives. Knowledge is power, and I am so grateful that I know what is going on and will be given tools to help my boys and Aaron and I. I am also so grateful for a loving Heavenly Father and Savior, who are constantly comforting me, and for supportive family and friends.

12 comments:

Marcie said...

Oh Rachelle, I am sorry to hear that. Do you know what's funny though? A lot of those symptoms do describe most toddlers! It had me wondering about my girls because they do a lot of the same things. You are an awesome mother and will be able to take this in stride.

Angie O said...

Wow, being a mom of toddlers is hard enough. You seem like an amazing mother!

The Foys said...

That's crazy. We have a few kids in our ward with asperger syndrome and they are very smart and awesome kids. You are an awesome and wonderful Mom and Heavenly Father knows it. That's why he sent you two very special boys :0)

Cami said...

You and Aaron are the parents for the job. When I think of 2 parents that can make their kids feel safe and secure, it is you guys. Aw, your boys are just the cutest, most adventurous boys and I love hearing about them.

Kate said...

Rachelle, you and Aaron are amazing parents. You do so well. I know that Heavenly Father trusts you guys with those sweet boys.

Lorel said...

You've got this, girl. You are one of the most calm and patient people I have met, and if anyone could tackle this, it is you. And of course Aaron. You are both fantastic. I'm really sorry that you two have to add this challenge on top of having toddlers in the first place! God knows yall and loves you - and adores those sweet boys. He can be with you every step of the way! And the special programs for kids with aspergers are really amazing. That will be a tremendous help!

*Elizabeth* said...

I am so proud of you! You ARE patient...I know b/c the semester we lived together we were...uh...a mess. And you were still nice about it. AND we made you wait to use the bathroom until you nearly peed your pants (not on purpose). I am glad they will be able to get help. They have good parents - that is for sure!

Jessica Nelson said...

Rachelle! You are a champ. I'm with Elizabeth, you ARE patient - I'm a witness! What a shock to have both boys on the spectrum. BUT what a blessing to know now, and not after they are both years into school. I had a friend at BYU-I with aspergers. He is now an accountant. Brilliant kid - absolutely brilliant. I have no doubt you and Aaron will be incredible assets to them as they learn and grow. They are blessed to have you! =)

Kevin and Eliza said...

Rachelle, I'm very sorry, but I'm glad that you know and now have the knowledge/power that comes with knowing. I have to agree that many of those symptoms describe my boys too. Being a mother can be really tough, often I feel like I'm at my wits end too. Take care and I hope things go well for West and Jack and your wonderful family.

Nicci said...

What a shock Rachelle! And you are a very patient person. The special schools will help a lot, especially the younger you enroll West and Jack. And lots of kids with Asberger's are very smart and function in society great as adults. If you need to vent or talk, call me okay?

Jenn said...

Wow, I didn't know this was going on. That is so hard to hear! It's hard enough being a parent, then to add an extra challenge--crazy. I agree with everyone else, though, you are an amazing woman, and those boys are in good hands.

Kendra | Our Homemade Happiness said...

That is tough news. You have such a great attitude. Now you know its aspergers you can move forward.

I think my older son has a mild form of aspergers. Autism runs in my family. He has some of the same symptoms you described. Maybe you remember his obsession with letters when we lived at Union Square. It's never been bad enough (or maybe I'm just in denial) that I've gotten him tested but I want to take him to an occupational therapist to help with his sensory processing disorder. Food has been such an issue with him. He's gotten a lot easier now that he is five but he still has his days. He's doing great in kindergarten.

My nephew did a special autism program when he was three and it helped so much. He's doing great now that he's 8. My other nephew has autism and he's doing great now too. I think he's 12.

Hang in there. You are doing a great job!