Thursday, September 20, 2007

Hope

Melissa alerted us to Oprah's show on Wednesday where she had Jenny McCarthy and Holly Robinson Pete on talking about their experiences with having children who have autism. As the mother of a son with autism, I was interested so I watched the show. I knew because of Autism Speaks that there has been an increase in the number of autism cases. When Brent was diagnosed in 1989, it was 1 in 10,000 and today it is 1 in 94. Such frightening statistics. I wish they could figure out why it's on the rise, why it effects boys to a greater extent, and what causes it. I am sure grateful that Brent wasn't born during the time they blamed it on cold moms who didn't hold their children!!!

I kept listening as Jenny talked about wanting the parents out there to have hope. When you're in the thick of it, it's so easy to lose hope and rely totally on what the doctors and "experts" say and think that it's going to be just like they say it is. I loved when they talked about wishing the doctors would listen to the moms. I remember my first pediatrician telling me I had to be Brent's advocate--get him whatever he needed--services, etc., no matter how hard I had to fight for them.

I think of our experience when Brent was diagnosed. I still remember that idiotic (well that wasn't very nice was it) psychologist who told me he was borderline mentally retarded and would graduate with a fourth grade education. I just stared at her and she said, "You're having a tough time accepting this, aren't you?" I said, "Yes." She proceeded to pat me on the arm or shoulder and said, "Well you have to." I said, "I'm sorry. I don't. I see potential in him that you don't see."


I would love to go back to North Carolina and see this therapist today--with Brent, of course. He could show her his high school diploma along with his medals for having top marks in two of his classes. (He was mainstreamed and did not have any adapted classes.) They also told me he would never understand religion because it is too abstract. This is the boy who when he was 10 or 11 received Legos in his Easter basket. He said, "Legos are great, but the Atonement is such a better gift." I'd say he understood. In January he returned from a 2 year mission for our Church. He is currently going to college in Utah.

Through the years I have visited with moms who have children with this disorder, and my heart goes out to them. I recognize that each situation is different. I am just so incredibly grateful for Brent's progress and all the teachers, therapists, and friends who have been there to support him. I also know what a struggle it can be on a family. I am so blessed to have a husband who was my rock through everything, as well as family who was there for us.

I am not an expert--just a mom who understands what it's like, and I write this only to give hope to anyone who is struggling with a situation like mine. My prayer is that you will feel hope.

LET ME ADD THIS AFTER READING THE COMMENTS: I know there are lots of great psychologists out there, so please do not think I am trying to bad-mouth any of them--except perhaps the one I had. I'm sure she was just telling me what she thought was right, but I truly felt she was destroying any hope I had, and was quite condescending in the process.

12 comments:

Kayelyn said...

I see that sometimes kids are given a less than accurate prediction of what they are capable of. We really don't know. It isn't really in our hands. We just do what we can.

I was excited as I read how well your son is doing. Great family support contributes.

Tonya said...

Thank you for sharing your thoughts on this. The statistics on this are unreal. I am touched by your story and your faith in your son.

Nancy Face said...

I loved reading your uplifting post. What a blessing that so many miracles have come into the life of your son, and of course, to you. Bravo for not accepting the gloomy diagnosis, and instead, doing all you could do to help! :)

I watched the Oprah show, too. I thought it was interesting to hear about the wheat and dairy issues in the diet, and it was a good point that doctors should pay more attention to what moms observe concerning their children.

Thorny Tree Lady said...

Austism runs rampant in my husband's side of the family. There are at least 9 grandkids (that we're sure of) that are on the spectrum. One of the things their docs & therapsts keep saying is that the increase of cases is due to the new definition of "spectrum." 10 years ago someone who is now on the severe end would be classified as "retarded." Now that label doesn't exist. So the #s of Autistic cases are on the rise, but the #s of Retarded cases are on the decline. It's difficult to deal with no matter what you call it. Bless you for your efforts in bringing-up such a special child.

Holly said...

I missed it, darn. I understand the advocate part. My younger son has Sensory Processing Disorder (also on the Autistic Spectrum) and we have interacted with quite a few specialists. Our son has made incredible progress and I think it's because we took control and learned about him and what works for him.

Kudos to you for doing all you could to help him, rather than just accepting the diagnosis. You're an awesome Mom.

Melissa said...

I too watched Oprah... and well, one of the first comments really set me off and I couldn't enjoy the rest of the show. Oprah opened the show by reading a part of the book where Jenny McCarthy says that "when a child is diagnosed with cancer the community rallies around them and brings them dinner. When a child is diagnosed with autism, families that you knew avoid you in the grocery store" - that is not an exact quote, but it's close. It made me mad. First of all we have never had that experience of people avoiding us. I had people calling me telling me about therapies, emailing me articles, finding people to help us. I never lost a friend because Little Bug has autism. Second, I HATE that she compared autism to cancer. As far as I know, no child has EVER died from autism. The comparison seemed so crass to me that I didn't get a lot out of her segment of the program. Every time she talked I just got frustrated... blah. Sorry... didn't mean to rant... :) I am so glad you are willing to talk about your experiences. I know it helps me!

Lei said...

Good for you - standing up for your son and trusting the conviction that he had loads of potential, as we all do!

Yvonne said...

I struggled so much writing this post--because I was concerned how it would be received. Thanks to all of you for taking the time to comment.

kayelyn: Please know that I was not trying to be critical of therapist.

We are so grateful for Brent's progress.

tonya: Thanks. The statistics are incredible.

nancy face: I have to say when I received the diagnosis I just really felt it was not correct.

thorny tree lady: I'm sure there are a lot more cases diagnosed today. And that theory about the autism sectrum sounds like it could be part of the reason.

holly: Thanks. I'm just so appreciative of all the wonderful help we received. I hope things go well as you seek for services for your son.

melissa: I, too, have never had friends turn their backs on me, but I know that there are people who don't know how to handle different situations, so some do run. I think her reference to cancer was just to say that what works for one child may not work for another. Thanks for saying it helps.

lei: You're absolutely right--we all have great potential. Thanks.

Kimberly said...

What a struggle that must have been, but how sweet the reward!

Liam's Mom - Gina said...

What a wonderful post! I hope more moms find your story. Adventuresinbabywearing.com wrote about the very topic also after watching that Oprah show.

Alice Wills Gold said...

Oh Yvonne...this is SO inspiring. I am in tears thinking of your baby's progress...thanks so much for sharing.

Inspiration Alley said...

I think it's really difficult to evaluate the life expectations of people on the spectrum. Look how wrong they got Temple Grandin. I'm really pleased that your son is doing so well. My own son's functioning level varies according to sensory pressures and anxiety, but like your son is fortunate enough to be doing well.