Thursday, November 10, 2011

Our journey with Ellie...

Part of my bloggy silence in the last several months has been due to a journey we've been on with Ellie. I have been silent about it, because I wanted to wait for answers. I wanted to have details to share, maybe even wisdon to impart...Ha! :) In all seriousness though, it's been a very rough road with Ellie since spring, and last June after doing some research, I set out on a path to get some serious answers.

Autism. It's a scary word, but a word that has become increasingly familiar to me in the last several months.

In August we started seeing a family counselor to explore what was going on with Ellie. Yes, she has Sensory Processing Disorder, and we have had our challenges with her in that regard, but for awhile we felt like we had things somewhat under control. Starting in the spring, and continuing over the summer Ellie slid into a bad place. Her sensory problems increased, her meltdowns increased, she became angry, sad, anxious, fearful. As school started, her problems hit an all time high. She cried for an hour before school, and an hour after school. Socially she has had an extremely rough year, not being able to handle other kids, not understanding social rules, not functioning as a typical 4th grade girl. Not even close. The possibility of an Autism Spectrum Disorder was immediately brought up, and so we began walking a new path.

We're still on this path, with all it's twists and turns and looong waits to see doctors and therapists, and have numerous evaluations done, but we finally got the first of our answers yesterday. After weeks of testing, Ellie's school has diagnosed her with Autism.

Now, if you know Ellie at arms length, you may be confused. She appears at first glance to be a very "normal" child. But if you watch her, really watch her, you will see the differences. She does not play, she does not understand social rules, she is extremely detailed, she cannot tolerate changes in routine. She is not Autistic, in the "Rain Man" sense. She is very high functioning, with her major areas of concern and delay being in social areas, sensory areas, and gross motor areas. She now has an IEP in place, that spells out her needs, and what special services she will receive. OT, Language therapy, Social Skills training, etc.

We are still waiting for a more specific diagnosis, which will come from an independent neuro-psych evaluation that is scheduled at the beginning of December. That's the "big one" in my head, the one that will give us more direction. For now though, I feel that we're on the right path. The counselor/therapist that we're seeing specializes in Autism Spectrum Disorders, and he and the school feel that we're heading in the right direction. I have struggled with this, prayed over this, cried and lost so much sleep over this, but I do feel like we're getting there.

Of course I don't want my child to have Autism, but I do want her to get the help she so desperately needs. I am counting her diagnosis as a victory. She is a bright, beautiful girl, and with a little help, I think she will use her special needs and special talents to become a wonderful help to others someday.

To be continued... :)

7 comments:

Carissa said...

i'm so glad you shared this. but i'm so sad for ellie at the same time. i agree with you though, this information and the help it brings can only lead to a brighter future for her. love you, friend.

Jamie said...

Praying.

Jenn said...

Knowledge is power and I'm proud of you for not giving up, but being relentless in advocating for Ellie. She is a precious girl and it sounds like you are on the right road. There is victory in understanding and I'll be praying for you and your family as you journey down this road.

Anonymous said...

{hugs}

Knowing what you're dealing with will be a huge relief on you. It's a path you're unfamiliar with and the fear of the unknown is always scary...but knowing that you will get help for Ellie has got to be comforting. Hang in there!!

Alana said...

For some reason I am just now seeing this on FB. I know this is going to be a positive step for you. I am thankful you have an answer and that you will get the help you have been needing so desperately. We love you and are here to walk alongside you every step of the way. Love you!!

dawn said...

Rooting for you and Ellie. There is a light at the end of the tunnel. And God has her in his hand. He knows.

MarytheKay said...

I'm sorry I'm just now reading this, and catching up...

New paths always seem scary. At least to me, they do. Sweet Ellie sure has a good mama and daddy checking out every nook and cranny of that path... And like Dawn said--God already knows the path. That's always the best part to me!

Praying for you today, friend.