- A positive look at our first year with Asperger’s Syndrome -
The last year in the ANW (A Nurse’s Wildflowers) household has been one of the hardest, but also, one of the most exceptional years yet. For those who are newcomers to the blog…I have a 10-year-old daughter, Tee, who was diagnosed with Asperger’s Syndrome in the summer of 2012.
Her diagnosis was later re-confirmed in the spring of 2013 with the school district….yes you read that right – the school district. I pulled her out of homeschool just to get an official IEP so we could utilize the resources that our taxes pay for…personally, I’m not sure if this was ultimately the best decision but that’s a different post that you can read here.
In the middle of this very long season, we were also buying a house, I was diagnosed with Adrenal Fatigue, and I was starting homeschool as a newbie. When we were looking for that perfect house, there was this specific house we drove by every day. There was a large wooden sign on the road that simply stated, “TRUST HIM.”
At the time, I felt this sign had something to do with house hunting (because it wasn’t going so well). I always noticed this sign and it was a great source of encouragement. I assumed He was trying to tell me to lighten up about the house hunting and trust Him…but after thinking about my last year and what we’ve been through, I realize He was talking about something much bigger!
The months leading up to my husband and I deciding to go ahead with the autism evaluation were some of the hardest months of my parenting experience….and the evaluation process was just as stressful. By the end of it all I was spiritually, mentally, and physically exhausted. Going through it was hard on everyone.
With that said…
Since this is a positive post, I don’t really want to go into a lot of the details of signs and symptoms, reasons for doing the eval, mega meltdowns, life lessons, and negative evaluation moments. If someone shows interest, I would be happy to include that info in a different post. I wrote, “When Your First Child Has Asperger’s Syndrome,” at the tail end of the final evaluation meeting with the public school system. The post is a blunt and to-the-point dumping of how I felt at that time in my life about it all…I was a bit frustrated…you can get a little background info there.
Since writing that post, things have been completely different.
I want to give those parents who are right in the middle of their child’s therapy and/or diagnosis process a bit of encouragement…some light at the end of their own personal tunnel.
First, let me say to you, IT WILL GET BETTER. Your days WILL get easier…or you will grow some more tolerance and it won’t seem as bad as it was. I know from experience.
I am so thankful we decided to go through the autism evaluation process. Trust me, I tried to talk myself out of it daily and as for my husband…well, it was hard for him too. Up until recently, I found myself more negative about the whole thing than positive. But things have changed. Mostly, things have changed in my heart.
Let me give you some of the highlights of the year….
Getting that diagnosis confirmation – that we were not bad parents and that something was truly different with our child – was the moment that things began to change for our family. It was as if someone had finally washed a window that was covered with an inch of ash. I sought out all the help I could get…books, local resources…and honestly, plain old venting to the listening ear.
With the suggestion of the developmental doctor, we utilized occupational therapy and a speech language pathologist.
There were so many things my daughter was struggling with that I had no clue were even issues…all of her activities of daily living (ADL’s), significant sensory issues, and extreme mental rigidity are some of what we had to address. My daughter had great skill in concealing her struggles (still does) and I can only imagine how isolated she must have felt.
It was heart wrenching to go through the beginning stages of the evaluations and therapy but there was so much growth. Even though we had to stop going to occupational therapy after only a couple of months (2x a week) because of finances, we were able to learn a lot.
I say “we” because my daughter isn’t the only one that needed help. This therapy is probably just as beneficial, if not more so, to the parents. Not only is it an eye opener to the true struggles your child is having, but it is also a great way to learn HOW TO HELP YOUR CHILD function and succeed in life.
If you were to ask Tee, she would say her favorite part of getting the motor training was learning how to braid and how to tie her shoes…as an almost 10-year-old, this was huge to her…FYI, pipe cleaners are miracle workers for learning this.
Personally, I think the coolest part about this therapy was learning that Tee was considered gifted in categories relating to visual perception. As a nine-year-old she scored age 17 on her testing. What this meant for me was that I had a way I knew I could help my daughter…a way I could actually teach her with some success. This is huge for me and I finally felt that I had a tool that wouldn’t be a waste of time. Here is a good post @ Child of Mine on what some of this testing looks like.
This tool of using visuals proved very effective during her speech therapy. While going to speech, we learned that Tee was in the “less than 0.5 percentile” for auditory processing….language processing was almost as low.
Hearing this information as a parent is a bit of a shock. I mean, what do you do with that kind of data? She isn’t hard of hearing…the words just don’t make it to the brain in the same way they make it to our brains…and <0.5% is like saying that she doesn’t understand much of anything she is hearing. Wow!
Again, this was so saddening to me. It’s like a spear through the heart. Why hadn’t we gotten her evaluated sooner?
Utilizing the speech language pathologist proved to the be the best thing we could have done. You see, these specialists also do behavioral training. They don’t just teach kids how to speak words…they teach them how to interact and what the social norms and unspoken rules are. And through all this, I got to learn once again, HOW TO HELP MY CHILD.
When we started going to this therapist, things were hard. Tee did not want to go…couldn’t understand why she had to go. At my request, the therapist was actually the one who told Tee why she had to go to the therapist…what her diagnosis was. That was a difficult day. Tee hated her therapist for this….at least for a little while.
I did the only thing I knew how to (besides praying) since she didn’t want to talk…I bought her books. Lots of books. Books about Asperger’s. Ones with animals, cartoons, famous people, social rules – anything I could get my hands on. She wouldn’t touch them. She hated everything about it.
At one point she was very low….I ignored my inner voice and God and pulled her out of homeschool because of this. It was a hard time for both of us. I was at a loss and just wanted to throw in the towel. I was done hitting my head on a wall. I am such a strong-willed person myself and I didn’t let Tee get away with a lot…I pushed her…probably too much. School at home was chaotic and disrupting the whole family.
When Tee started public school only caused more problems but it was a necessary evil. Towards the end of the school year she started to recognize that what she had going on was not a curse. Occasionally, she would do the unexpected like briefly showing kindness to her siblings, helping without being asked, and even talking about Asperger’s. Then, this summer, she started to read all those books I bought her so many months ago.
She was changing her mind about herself. She was finally at a place of accepting the person that God had made her to be.
Not only was she changing, but so was I…the whole family was.
Although I catch myself often thinking with my old negative brain, I am growing as a mom of an Aspie….or what ever else you want to call it. I am learning to accept that God gave me a special gift.
I have no idea why God thought that I was the mom for the job because I feel like a failure most days…losing my temper, patience, and expecting Tee to be something she is not. But, I am working on changing my attitude on the whole matter. I have finally accepted the job I’ve been granted. Although I still feel like a floundering fish most of the time, I am confident that things will continue down a smoother path.
Of course, we still have more downs than we do the ups. But, things are so much better than they were a year ago. My daughter still has many struggles, most that are nonexistent to the unknowing person. But, we’re moving in the right direction. I still forget that my daughter has an autism spectrum disorder and expect her to behave differently…but maybe that’s why God gave her to me….to expect more from her.
The theme for my daughter this year has been one of learning about herself and the special, important person that God made her to be. We talk often of the amazing people in history who were either officially diagnosed with autism or thought to be autistic and the spectacular things they have contributed to humanity. I truly believe these special people are the change makers of our time and I want my daughter to remember this when she struggles.
It has also been a year of learning how to work with her struggles and challenges. Getting “stuck” on things still becomes an issue often, but we are learning how to “Roll With It” and how to put some humor into the mix of things.
Something that seems so trivial but really speaks loudly to some of the changes we’ve made so far is this picture below…almost a year after learning she had Asperger’s.
A year ago, this would’ve never happened. Can you spot the potential problem for an Aspie (or other autism spectrum disorder)?
Face paint use to be a sore subject. This was July 4th…LOUD July 4th with stinky people and scary fireworks. Chaotic July 4th with parades, barbecues, and many, many people to deal with.
This day was a true testament to how far we’ve come. Tee got to ride on a float (a large semi pulling a trailer with hay bales) with her karate crew. I was so. SO. Worried. I sat on the side lines watching for her group. As I saw the semi pull up, there Tee sat, calmly smiling next to her instructor. She was enjoying herself. Wow!
After the parade she had a smile from ear to ear and was determined to get her face painted. We stood in line for 45 minutes…I can’t say I supported it because I tried to talk her out of it several times knowing what has happened in the past…and I was kind of done with it all. But she was determined and in this instance, her rock brain was her greatest strength.
That evening, with tradition we went to a family friend’s and watched a crazy amount of fireworks. This was a little more out of her comfort zone but…but…she sat there without causing a scene. She was able to recognize when enough was enough and when to go inside, which she did at one point. We never did get to try out the sparkles again this year (which was the ultimate goal) but I am so glad at how the day went.
We won’t talk about the rest of the week (because after the overstimulation of the day it wasn’t an easy one)…but for this moment, things were good. Looking back I wish I would have enjoyed it more but I have this picture to remind me of the huge strides we’ve made!
I am looking forward to this next year and am excited to see the growth we do!
Pray for me this homeschool season, as I am determined to cruise through a different homeschool experience than I had last year…..and I really need it this week as negative “rock brain” has awakened right before school starts!
What was your greatest challenge this last year?