Aiden's Journey

Monday, April 2, 2012

Labels and Stats

Baby boy number 3 is almost here, and I find myself thinking...what if?

I've read some research that says the baby has a 5% chance of be diagnosed with autism (2 articles); but recently, I read 15% (Abe's school textbook that is 1 year old), and an article a few months ago that said 27%. All of the info states that autism is more common in boys--up to 4X higher. I wish I would stop reading. I'm tired of the inconsistencies and theories! There is definitely a genetic link, but an environmental one is also possible. Many people blame vaccinations (all the research says there is no link) and chemicals in our environment (certain drugs do increase the risk if consumed while pregnant) for the rise in autism. But some, believe it is new diagnostic criteria (the DSM guidelines for diagnosis are going to change again in 2013), more awareness due to the media, and a shift from a diagnosis of "mentally disabled" to "autism". A friend who works as a therapist for WEAP and I discussed the labeling of such children. Some of the children she works with she has questioned their diagnosis. My OB/GYN also warned me about excessive labeling. I agree. There is such a wide "spectrum" of skills among this population. The general manifestations are the same, yet so different. I try hard not to get caught up in all this, but having another child with special needs frightens me a little. I don't feel adequate NOW. I can't imagine having 2 children who need extra help. I hope if this does happen again, I will turn to the Lord, trust that he knows me better than I know myself, and plead for his help and guidance.

On a positive note, Aiden is doing very well. He is responding more and more to my words, and is starting to say "I love you" spontaneously as well as "I love you too" when I say it (which is often). Those are the moments I cherish. Aiden still has a hard time when he is missing an object he is set on playing with, but that is the only thing that really challenges my patience. I continue to be very grateful for Austin. He plays very well with Aiden, and is such a great example for him. Ok, they fight a lot too, but Aiden needs to learn how to interact with others in all aspects of daily life. Potty training is going better at school, but I'm having a hard time approaching it at home. Aiden says, "no potty" when I ask him to sit on the toilet. I don't want to force him to do anything. Plus, I'm worried I'll get somewhere with it, and everything will be out the window when the baby comes! I really hope both boys are potty trained by the end of this year. I'm grateful for Aiden. I wouldn't change him for the world. He is such a sweet, loving boy! I am eternally grateful for his progress!

Thursday, March 8, 2012

1 year

It has been nearly a year since Aiden's diagnosis...

I've learned so much about autism, myself, and "the big picture" this year. I don't think I can accurately write how much Aiden's diagnosis has changed me as a mother, a friend, and professional. Most of the time I feel grateful. Some days I wish I never had to see, hear, or read another thing about autism. I've learned to keep an open mind, to question "research", and find my way spiritually. I continue to struggle with all the unknowns, and I pray that someday I will truly be at peace with them. One thing is for sure, I have a lot more questions now than I ever did for our Heavenly Father. Gratefully, the question of why this has affected Aiden and our family has already been answered. Aiden is our blessed gift. Heavenly Father trusts me with him, and that is what keeps me going, no matter how inadequate I feel as a mother.

27 weeks pregnant, Aiden-4, Austin-2

Ironically, I was always the one who befriended the "underdog" in school. I went to prom with a special needs young man, and I had the time of my life--serious. Later, I worked with a special needs young woman in my first job as a Dietitian. We became good friends. I still wonder what ever came of those great people I was blessed to cross paths with. My deepest hope is that Aiden makes good friends--friends who accept him, and are patient with his challenges. I can't protect him all his life. He needs to find his way on his own. I hope he meets some inspiring people along the way!

I'm excited to see what the coming year has to bring for Aiden. How our lives will change with a new addition to the family, and what path the good Lord will take us in after Abe finishes school next Spring. So many more changes coming our way...

Monday, March 5, 2012

A-moments

Call them Aiden moments or autism moments, but they are rough...

When Aiden wants something, he wants it BAD. Normally, I can read Aiden like a book and help him find what he is looking for, even when he can't verbalize what it is. However, yesterday morning he wanted "bears," and I had no clue what he was talking about. He has teddy bears, but he prefers his elephants, so I really was at a loss. Aiden became very upset when I couldn't find what he wanted. So upset, I had to shut myself in my room to handle the crying. Aiden pounded on the door for a few moments, then finally, in a low, sweet whimper, Aiden said a rare sentence. "Momma. Open the door." Of course I did, and Aiden gave me the best hug ever. We sat there on the floor hugging each other for a long while.

Something must have thrown him off again, because the same day, about 3 hours later, he was upset about something that "wound up". He wanted to stay outside and refused to get in the van. He cried for over an hour, and just wanted to be held when we got inside the house.

These moments are very rare, but when they do happen, it is rough. These are the moments I really wish I could put myself in his shoes, or better yet, that Aiden would finally find his voice.

Tuesday, February 14, 2012

Waiver Program

February 14, 2012--Valentine's Day!

I received a phone call today and nearly cried! Aiden is now on disability, and officially on the waiting list to receive services through WEAP. Although that is great news, it still means Aiden won't receive intensive therapy until after his 5th birthday (around April). Fitting in 20 hours a week of therapy on top of a 7 hour day at school will be a significant challenge; however, for a short while, Aiden will still be in Early Childhood, and only be going to school for 2 1/2 hours a day (April-September). By some miracle, he could be potty trained and communicating by then, which Abe and I agree are our goals for Aiden this coming year.

I've been thinking a lot lately about potty training Aiden. I was hoping Austin would set the example, but he isn't quite ready yet. Austin will pee on the potty often, but only when he wants to. Maybe this summer things will change in that regard (he is only 26 1/2 months old). So, I'm moving on for awhile, and focusing on Aiden. I'll give it a try again this week and see how it goes. Now that he is on disability, I can apply for diaper assistance. Thank goodness, because 3 children in diapers will be rough financially!

Aiden is making great progress in many areas! He interacts more, speaks more, plays more appropriately with toys, and seems to understand and respond to nearly everything we say! Those are great blessings and miracles! I'm a little nervous when baby #3 comes, but that will be an adjustment for ALL of us...not just Aiden. It will all work out, because I know Ashton is a big part of Heavenly Father's plan for our family too :)

Monday, February 6, 2012

Waisman Center Part 2

Almost a year later, Aiden was finally reassessed at the Waisman Center today....

I observed as the psychologist assessed Aiden for 2 hours today. Aiden surprised even me! He has made more progress in the past year than I realized, and I was SO proud of him! The labeling criteria in the United States (not Europe) is changing. There will no longer be labels such as PDD or Asberger's. The label for all people on the spectrum will be ASD--autism spectrum disorder. This is because practitioners can vary in their assessments so greatly. To me, autism is autism no matter how you label it. We know that Aiden is mild. In fact, I watched as a little boy (maybe a year younger than Aiden) lost control in front of us, and I thought about how blessed we truly were. How different our lives would be if Aiden wasn't going to have some sort of functional capacity, or failed to make great strides in his development. I would dedicate my life to making Aiden's life a quality one if he struggled more than he does, and there definitely would be no more children in our family. My heart went out to that father.

Aiden was assessed at a 3-3 1/2 year old level for cognition and fine motor skills (he just turned 4). His speech however, is at a 2 1/2 year old level. I expected that. The prognosis for someone with Aiden's level of function is very good. In fact, children like Aiden are usually those that do the best in Behavioral Therapy. This is what we were told today. So, now the only thing we can do is wait for the Waiver Program to go through. It will take another year for that, but given Aiden's success and progress with Early Childhood alone (and a lot of love and support from us), I'm confident Aiden will continue to make great strides without intensive therapy. I only wish for more help with potty training! Who knows, by some miracle he could decide to talk on his own one day, and potty train soon after! I KNOW the words are in there!

Friday, February 3, 2012

Problems

It amazes me how much a complete stranger can make--or completely break--your day.

I was in a really good mood today. Things are going pretty well, and I was feeling grateful and happy, but right now my spirit is broken. I took the kids to McDonald's playland tonight. Abe is gone for the weekend, and we have no food in the house, so off we went...just the 3 of us. All was well until it was time to go and the kids wouldn't listen. I stood by the door calling their names, holding their coats, waiting. Suddenly, a lady screamed, "hey, your kid is beating up my kid!" She yelled at Aiden, "get out of there! You need to go home!" And then at me, "you need to pay attention to your kids!" I started to cry. All I could say to the lady was, "my son is autistic. That was the rudest thing anyone has ever said to me." I will note here that the "a" word didn't need to be said at all--there is NO reason for hitting, but the word just came out. I'm overprotective of Aiden, and she was trying to protect her son. I have no idea if Aiden was hitting her kid (they were both in the slide), but her son wasn't crying or upset at all. I pulled Aiden aside and asked him what he did. Of course, Aiden didn't respond verbally, but he did kiss me, seeing that I was clearly upset. I said, "you know we don't hit, right?" Aiden just let me hold him. Another mother approached me, and tried to give me some comfort. Her oldest was also on the spectrum. "Autism or not, they are boys, and they are going to be rough". I agree with her. There was no reason for that ladies reaction. I already struggle with feelings of inadequacy, and she threw that right in my face. If only she knew how much she hurt me. I do the best I can. If only that lady knew how much I DO pay attention to my children. I'm terrified to let them out of my sight for a minute, especially after losing Aiden at the mall. I sincerely hope I never make anyone feel the way that mother made me feel tonight. Never.

In the car I wished I would have done things differently. I should have had Aiden say, "sorry". Then again, I probably would have said something nasty, and that would have made the situation worse. We left right away, and that was probably for the best. I cried all the way home, but I said a prayer for her tonight.

Mean people suck the life out of me. I sure hope I'm not one of them!