We had our big long meeting with the school yesterday. The small room we all met in was packed. As usual there we all sorts of professionals there. After sifting through the results of the many evaluations given to Ethan in the last few months by special ed specialists, autism specialists, the school psychologist, occupational therapist, physical therapist, speech therapist, his teacher, me, etc. Ethan was in fact diagnosed with mild to moderate Autism. The school psychologist also thinks Ethan has some kind of underlying psychological disorder as well as Autism, which is also what our neurologist found. Since Gary is done with school he was able to be there with me. Now that Ethan has this diagnosis things are starting to happen for him at school. He is going to go to summer school first of all because he has a hard time with change the adjustment from school to summer then back to school will be difficult for him. Also he is going to be given an instructional aid to follow him around all day and help him with everything, make sure he stays on task, and help with behavioral problems he might have. He is also going to get speech, occupational, and physical therapy. He is going to get preferential treatment in the classroom like where he sits and the length of his assignments etc. To be honest I don't remember all of the things that will be happening mainly because by this point I was feeling exhausted and overwhelmed. There was a lot being told to me and a lot to take in and I don't quite remember it all. They also started talking about when he was 16 and how they would have to plan what they would do with him at that point. This part made me sad. The thought that he may never go to college, get married, go on a mission, live on his own and do and have all the things that we all have and do is so depressing. At this point I started to cry. Very embarrassing. Of course everyone was so sweet and supportive. I was given a long list of support groups and resources.
Once Lorin and I were talking about what it would be like when she grew up. She said she wanted to be married and have lots of babies. She then had a worried look on her face and asked me if Ethan would ever be able to live by himself. I told her I didn't know. Then she had a big smile and said "I'll take care of him mom. He can live with me in my house with my kids." Her love, concern and generosity invoked feelings in me that I still don't quite know how to express. I just told her not to worry about it because that was mommy and daddy's job. I know that she does worry about it though. She's always been more maternal toward him than sisterly.
I came home from that meeting and just collapsed on my bed. Except for a family trip to the park for family night I pretty much slept the whole rest of the day and night (with the help of Lunesta of course.) I still feel mentally exhausted. Don't get me wrong, I am so thankful Ethan is getting this help and I knew that he was Autistic even without the official diagnosis but it seems like this meeting marks the point at which all of our lives change and I don't feel quite prepared for it, not that you could be.
9 comments:
Okay, I am almost crying about what your sweet daughter said!! What an angel. I don't think I would have been so kind to my brother if it'd been me as a kid.
What an overwhelming day for you. I'm glad things are coming together for Ethan, but I know what you mean about it being depressing. I wish I could promise you (or myself) that our sons will do everything we had always hoped for . . . but I guess there are no guarantees on any kid. Anyway, sorry to keep rambling! I just really appreciate this post! Love ya, girl.
Lorin's comment made me cry right here at work. What a loving family you have been blessed with. I feel every time I pray for you and Ethan that while it will be a challenge, you all will be given the strength to make it through. You will continue to be in my prayers. I am so happy Ethan will get the help he needs now. One day at a time...
Natalee-
You have an incredible gift for putting your feelings in writing. I don't know how anyone can read this post without being brought to tears.
Lorin's concerns are indicative of the sweet and loving family you and Gary have built--what a wonderful support group. But your support group goes way beyond your immediate family. I am sure you are aware that everyday many prayers being said for your family--on both sides of the veil.
Information overload is exhausting but if anyone can handle this, you can!
I feel very hopeful for Ethan. Having a daily aide, various types of therapy, summer school, and classroom modifications will make a huge difference for him. These are the tools he needs to feel understood and empowered. The world is his oyster--I see great and marvelous things in Ethan's future.
This must have been really tough for you and Gary. If you look at the future as the world sees it it may seen sad and depressing but we see things in a different way, we know that the Lord works miracles of all kinds. I have seen miracles with these children in the short amount of time I worked with them.
Give yourself a few day to let it soak in and adjust your mind. They are coming up with advances all the time. Love you.
Do you have his baby blessing to read? The Lord knew all this was ahead of Ethan when that blessing was pronounced. It may give you some hope and peace about his future. The specialists and therapists are never going to sound very hopeful - I guess they don't want to get anyone's hopes up. Don't take that as the final pronouncement on Ethan's abilities or progress. He's incredible. And just think, with all the help he'll receive from these people, it will make room for even more of his incredibleness to shine.
In the short time I've spent doing schoolwork with Harris, I've realized that the daily progression seems incredibly slow or non-existent sometimes. But then I look back at the beginning of the school year and think, "Wow! Dude has come so far!"
You take all the time you need to sleep and cry and adjust to all of this. The special thing about you is that you are a true champion of your children. You can very clearly see into their spirits and all of their gifts and talents. You are a vigorous defender of their goodness and worth. And Gary, you too. You have infinite enthusiasm and optimism. What a team! Each of you was handpicked to be Ethan's parent. Lorin, with her sweet self, was picked as his big sister. And that nutty little whirlwind Brynn to be his baby. Isn't the Lord merciful to send us here in the heart of such love?
"Official" is funny, isn't it? I knew that I was bipolar before the diagnosis, but here's the kicker: I still felt upset and overwhelmed and a little gypped when it was "official." That's what a label will do, I think. And I know that you and Gary, of all the people I know, will never allow Ethan's diagnosis to become a label. Like you've always said, he's a good boy.
Man, I wish I were there. Wouldn't it be nice to let the kids run rampant through the house while we eat junk on the couch? What am I talking about, "junk"? Gary, this calls for empanadas!!!
Natalee,
I don't really know what to say. It is really hard now, but it will probably get better. It is new and scary, but you will get used to things, and Ethan will get the help he needs, and he will start to shine. He is such a wonderful (and handsome) child. This time must be hard for you. We love you, and we pray for you.
Count your blessings, Natalee. Your wonderful Ethan is still your wonderful Ethan. Nothing has chanced because of a diagnosis, except change for the better. More help, accurate treatment.
Remember how loved you are, and how loved Ethan is, by family, friends, and the Lord. Hang in there, sweetie!
Hi Nat. It's been so long since I've had the chance to catch up with you. Your sister told me about your blog and I finally checked it out. It sounds to me like you are going through EXACTLY what Donnie and I went through with our oldest son about a year and a half ago. I can really sympathize with your heartache, concerns, and questions about the future. One thing that I had to keep telling myself is that Heavenly Father put DJ in our home for a very specific reason. He trusted me with this precious soul and, while it may at times feel overwhelming and scary, I am honored that he thought me up to the task. I have learned more from DJ than I could ever teach him. We have found some wonderful things that have really helped DJ to progress in school, socially, and physically. If you'd ever like to talk, share experiences, or just have someone to cry with, please call me - I'm totally serious - call me any time. 760-485-0675. You're in my prayers.
-Sarie
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