I have debated putting this on here, but here we go: Beckett has Asperger's, a high functioning form of Autism. We found out this spring/summer. His preschool teachers told us that they had noticed some things that he did at school that were characteristic of Asperger's, but they didn't know for sure. They suggested we have the school district's Early Intervention program test him. It took 3 different testing sessions. The first one was just standard testing to make sure he was on track for where he should be developmentally, and if there were any red flags, we would proceed from there. He was average for his age, but there were some Autism flags that showed up. They were things that I had just thought were unique, Beckett characteristics (him running place for a second or two before taking off), not symptoms of something else. When I got home from that first day of testing, I just bawled on my mom's shoulder. It was a hard pill to swallow. After I got my breath back, we sat down and talked it out some. I started to realize what a blessing it is to now know why he wont eat many foods, why he throws fits about stuff that make no sense, why he has a complete meltdown in loud, public places. Things that made no sense before now had a reason. It was, and still is, hard to think of my baby as having a problem, but at least now I can find ways to help him cope with it, and the rest of us as well.
The second day of testing was a month later and was mostly just me answering like 300 questions. I don't think I am exaggerating much (Beckett's principal gave me a fist bump when he heard I did that test to tell me that I was a trouper for doing it). They asked me stuff that I had no idea about, like does he use the word "between". I don't know. How am I supposed to know that? Who pays attention to that kind of stuff to begin with? Maybe better parents than me, which probably isn't hard to be. I also had to give his preschool teachers their own bazillion questions to fill out and return to the psychologist.
After all of those questions, they totaled all of the answers up and decided that he needed further examining, so they called me back to do a 3rd round of testing that involved the psychologist playing with him directly, while another psychologist watched and observed. I was in the room watching as well. I noticed things I had never noticed before. When the psychologist would ask Beckett questions directly about him, (i.e. What's your favorite toy?) he would completely ignore her, as if she hadn't said a thing. He just kept playing. When she asked questions that involved other people, (i.e. What do you like to do with your family?) he would respond most of the time. When asked to explain how to do things, like wash your face, he again acted like she didn't say anything. All of this reminded me of when Anabelle was born. He acted like she wasn't there. Not like how other kids that resent their new siblings do, but as if she really didn't exist. If I were nursing her, he would sit on my lap as if there was nothing there. He wouldn't sit on her or stuff like that, he just didn't see her as there. It's hard to explain. This realization was actually relieving to me. I had been feeling like maybe he wasn't born with it and that maybe I had failed him as a mother. I haven't been one to push learning. I didn't sit down and have school time each day, or take him on field trips, or any of the other stuff that other moms seem to do to help their kids develop properly. I started going to story time when Beckett was over 3 1/2, and only because I had become a hermit due to my depression and I had to force myself to leave my house at least once a week. I never did craft projects with my kids, only once in a great while. I have never had a set schedule. Every day is a "get dressed when you want" kind of day. I was afraid that all these things that I didn't do, that every other mom seemed to know how to do, was the cause of his Autism. But realizing that he had it all along, helped me realize that maybe I wasn't such a screw-up after all. Yes, I could have done all of those things, but it wouldn't have changed that he has Asperger's.
About a month after all of the testing, we met with the psychologist again and someone from the district to talk about where he fit on the Autism spectrum. He is actually high functioning for Asperger's, which is already high functioning for Autism. So that means that really no one would know that he has Asperger's, unless they knew what to look for. He could lead a pretty normal life, especially with training on how to manage the symptoms of Autism that he does have. That was a great relief to us to know that he can live a fulfilling life and wouldn't need to be dependent on us because of his Autism. They also said he will probably be an engineer of some kind and that he will make more money than anyone in that room. I was pretty excited to know that we could be dependent on him to pay for our retirement. :)
*I want to add a note here that we have decided not to tell other children, like cousins and friends, about his Asperger's, because they don't need to know, unless something serious happens and it needs to be explained. He isn't that different and knowing might cause them to treat him differently. So to any family members and friends that read this (all 3 of you), please don't say anything to your children about his Asperger's. We would greatly appreciate it.*
I guess I am telling everyone about this more as a form of therapy, getting it out there and out of me. For the most part, it really hasn't been too hard to handle, but there definitely are days that are difficult. I also wanted to say something on here because in some of the updates I have been putting off, I can say more things that I want to say about them, specifically our Lake Powell trip and Beckett's school experiences. You wouldn't quite understand why it is such a big deal that he rode in the speedboat without a complete meltdown, if you didn't know that loud noises really upset him. He did melt, but not completely. I want to be able to share the times that he makes big advances and have others to share in my joys. I might whine a little on here too. I'll try not to do it much though, because no one wants to read my depressing ramblings for very long. I can guarantee that.
One last thing I want to say is that since finding out and then sharing this with others, I have felt an overwhelming feeling of love and support from lots of different people. People have given me advice or talked to someone they know that works with Autistic children and gotten advice or their phone numbers for me. They have let me just talk about it as I am still processing everything about it. I haven't felt like anybody is treating me or Beckett differently because he is Autistic. In some of the reading I have found, a support group is essential for parents of Autistic children, and I am so lucky to have already started to find so many willing to stand up and help us out. We have been truly blessed to have you all in our lives.
6 comments:
I think the way you're raising your kids is pretty darn great. They are happy, and so kind. I'm grateful for how they treat Aspen!
And I hope you find all the support you need as you all grow and develop with Beckett. I'm always willing to listen if you need to vent. I only worked with an autistic boy for one summer, but it was a huge learning experience for me.
There is nothing to be ashamed about. The Lord knew he could handle it and that he is one of His special spirits. He also knew you guys could handle it. You haven't done anything wrong. You are a great mother and he loves you. I know you're going to do great and Beckett will be fine. Having a sister with a disability only taught me and others around her that they are special and need love just like everyone else. I actually prefer them over a lot of other people sometimes. ;) We sure love you guys! Call if you need anything and hang in there. :)
You are amazing, I have always thought that...you are a loving and patient mother! Thanks for your courage and example, we love and support you!
I have a really good resource if you need any ideas for activities or coaching, but it sounds like you're getting some great support already!
Thanks for all of the words of praise. You are very kind. I know I am not a horrible mother, but it is hard to find out something is wrong with your child and not ever think that you were part of the problem. Thank you for helping feel better about myself and letting me know of your support.
Alissa, I had no idea. I know how you feel. My nephew is autistic and it is very difficult to deal with. When he was diagnosed with it, it was still new and there wasn't much information about it then. There is so much more info and help for it now. Let me know if you need to talk. I'm here for ya. I've also heard of stories that they are special little spirits and that they are the ones that helped escort satan out of heaven, so Heavenly Father blessed them with that so that satan would have no power over them. Hearing that has brought so much comfort to my family. Good Luck!
So this is horribly delayed, but I wanted you to know I've always looked up to you as a Mother. You are kind and patient with your children. I see you affectionately playing, disciplining, and teaching them. You seem to have endless patience. Beckett is a great kid and will become something amazing because of how you raised him. He will not be held down by a label, because his parents have helped him function around and through something that is difficult for him.
I'm sure there will be hard days, weeks, or months, but keeping the eternal perspective in mind will help to keep you grounded on what is really important. Thank you for sharing your life with us.
Post a Comment