Big changes are ahead...

iVillage Member
Registered: 09-20-2004
Big changes are ahead...
9
Sat, 05-06-2006 - 9:49pm
Towrds the end of March, I took my little girl, who has autism, for a battery of tests, including an IQ test and an adaptive behavior test. This is the thirs time she has had the tests in the 4.5 years since whe was diagnosed. we do this to track how much progress she has made.
Well, I got the results today, and I felt as if my heart was ripped from my chest, thrown on the floor and stomped on. See, her IQ has actually jumped quite a bit, but she is still in the mildly retarded range, and her social skills are closer to those of a two year old than a seven year old. There were just some things in this report that opened my eyes a bit, and I feel like I have failed her in some ways. I have worked so hard to get her all the help she needs, but I have been working outside of the home all along, too, and dh and I had a talk today and pretty much we are in agreement that something is going to change around here...and that is likely going to be that once he gets a job, I will quit working for now so that I can focus on helping our daughter even more.
With all this stuff going on with my Dad, and fighting with the school district, and working and everything, I cannot give my daughter everything I would be able to if I were able to be here all the time.
So, I am praying that this will make a difference...and that it will work out... this is the hardest job I have ever had. : (
Heather
iVillage Member
Registered: 03-27-2003
Sat, 05-06-2006 - 10:02pm

Oh, Heather, my heart is really going out to you right now. What a difficult thing to go through!

For what it's worth, I've listened to you on here for a long time, and I am just awed by how much you have done for your daughter, and how hard you work for her. It's all a juggling act, and just because you haven't been home with her doesn't mean you've failed her. We all do the best we can with what we have, and no one can do it all. You've been making the decisions that were right for your family, and maybe now you need to make different decisions, but that doesn't mean you were wrong before.

I think it's amazing and admirable that you are considering all of your options, and that you are open to making severe changes if it's the right thing for your family.

I'll be holding you in the Light. I know things will work out for your family. In the mean time, peace and strength.

Blessings,

Heather

Avatar for 2locachicas
iVillage Member
Registered: 05-14-2003
Sat, 05-06-2006 - 10:03pm

Heather-

Don't beat yourself up!! We all do the best we can with what we got. Life has a serious learning curve. you have not failed your daughter, she is only 7. Kids are very resilient. I have a daughter that is special needs too and I am home with her now. But I wasn't for the first 4 years. I just couldn't. Every day is a learning experience with her on how to teach her better and how to help her survive. She was malnourished as a baby and will have troubles forever because of it.
Pat yourself on the back that you guys have identified the problem and are working to resolved it. She has many years until she will be an adult and you will have to decide what is best for her. The sky is the limit for her. When you are able to be home with her everyday it will be a wonderful, blessed experience full of discoveries, fun and frusteration. But I bet you will find every day better than the day before.

Loca

iVillage Member
Registered: 08-19-2003
Sun, 05-07-2006 - 9:21am

Heather,

For let me say this...I am not trying to sound heartless and uncaring at all, so please don't take this post the wrong way.

I have never mentioned this on the board, but my close friend has a 9 year old son that is autistic. She has always been a SAHM with him due to his behavior issues and not being able to count on other people to be able to handle him. Even with her being home with him, sending him to the very best schools, & doctors,ex. Kennedy Krieger, Johns Hopkins,he has had several experimental surgeries & medical procedures, like steroids. He is still only functioning as a child of about 2 years old. And its not from her lack of trying to establish normalcy in her child's life. In 9 years she has spent $100s of thousands of dollars on medical care & education.

Its not what you are doing or what the doctors are not doing. It all falls on your daughter & her capabilities. Stop beating yourself up over it and just give your daughter all the love and support that you have to offer.

I understand what its like to try to fight to have your child be as normal as possible. I have riden the roller coaster with her for years. Doctors & teachers like to try to establish false hope in unrealistic circumstance. We have not figured out why they do this, but its sad that they do. Really Autisim is a huge unknown, very little money is put towards research. She actually had a doctor suggest that her child may be normal if she allowed him to remove a 1/3 rd of her son's brain. That was too much risk to take for a huge unknown.

She is finally at a place where she is accepting that she can only control whats in her power and her son will develop to whatever capabilities he will be able to master.

Now back to your original post, quit your job to stay home because its best for your family, but don't do it because you think its the only way for your daughter to succeed in life. Do you know what I am trying to say?

Shannon


Pregnancy%20ticker
iVillage Member
Registered: 04-26-2006
Sun, 05-07-2006 - 10:32am
I'm sending you a hug and a big well done on the progress your daughter has made. I think the number 4 post lady said it really well, your daughter has made great achievements within her capabilities and thats wonderful. I also wanted to say I know a lady with a son who could only communicate by asking everyone which bank they were with. His social skills made it very difficult for him to interact with others and his mum found the situation very distressing. The thing is he has now come a long way and can interact much better and hold better conversations so much so that its hard to believe he had it so difficult. You are a wonderful mum and your daughter is very lucky to have so much support from you and her dad. But remember, those small achievements are like drops of water that will eventually become an ocean.
Love
Anne :O)
Avatar for endomagazine
iVillage Member
Registered: 11-09-2004
Sun, 05-07-2006 - 5:23pm

Hello,


I know that you are feeling a little down about the recent report from the testing. My husband's brother is autistic and functions at a 12 year old level. He is mildly retarded as well. He is 34 years old and lives with his parents.

Sincerely,
Lindsey Schocke

Geeks on Tap: Mission Accomplished

iVillage Member
Registered: 09-20-2004
Sun, 05-07-2006 - 5:32pm

Thanks, Heather.
I know I have done as much as i could under the circumstances, but now it is time to change the circumstances. There are two quotes that I am going to hang in my room..."If you always do what you have always done, you will always get what you always got" and "If you are fighting a gorilla, you don't stop when you are tired..you stop when the gorilla is tired." I can't afford to keep going the way I've been....not for the amount of money I bring in. Its just not the best use of resources, so dh and i are on the same page about this...i may go part time for awhile, but I think my days on third shift are somewhat numbered, for starters.
We talk on this board about being "gazelle intense"...about four years ago, i was that way about my duahgter's autism, and over the years, as I've seen her make more and more progress, i have taken a less active role (still VERY active, but not quite as much, I haven't gone to any conferences in almost a year...my dh went to one, but the big one I was going to go to was cancelled.), and i would feel better that i have done EVERYTHING i could. it might not make a difference, but it might, and i can't afford to take the chance...and my little angel can't afford for me to take that chance, either.

But anyway, thank YOU for your encouragement, and all of your kind words over the years. It has meant more than you know....thanks,
heather

iVillage Member
Registered: 09-20-2004
Sun, 05-07-2006 - 5:42pm

Thanks, Loca.
I didn't know about your daughter....I know that you probably understand exactly where i am coming from since you are going through something similar, in a way. I feel the whole spectrum of emotions...it seems to go in cycles, too... I feel guilty sometimes for how much i do for my daughter, how it leaves me with so little to do for anybody else, like my older daughter and husband, and then sometimes i feel like God gave her to me for a reason and so i just keep going, keep going.

I hope I am able to stay home soon, i would pull her out of the puclic schools for starters, because as well as she is doing in academics, her social skills fall further and further behind, and that is something she will never do better with without exposure to peers.

Thanks for reminding me of how young seven is...I know that, but sometimes, i forget...
Heather

iVillage Member
Registered: 09-20-2004
Sun, 05-07-2006 - 6:02pm
Hey Shannon,
I understand exactly what you are saying.....but I am not there yet.
when my daughter was dxed, I read somewhere about a 2% spontaneous recovery rate... I read about a 45% recovery rate with the right ABA program. I've read about miracle cures, I've moved across the country chasing therapy, had special doctors try to convince me to do things that weere totally off the wall. definitely, there are some kids, a majority, perhaps, that no matter what you do, will not progress. And then there are some that do, and for me, I have done a lot, but I haven't done everything I can yet, and this is my own child so i will not stop until I can say to myself with certainty that there is nothing else I could have done...
I don't think it is doctors or teachers who gave me false hope...I think it is that some have recovered...so I know it is possible. For everybody? Well, no, but for some.
I think giving it everything I've got is the only way i will ever be at peace with myself, and the only way i will be able to accept whatever limitaions my daughter may have. Otherwise, it is always going to be "What could've i done differently?"
I'm just not at the acceptance point yet...she can do more, I know she can. But right now, she is not getting what she needs...
But I definitely know what you mean.....
iVillage Member
Registered: 01-06-2005
Mon, 05-08-2006 - 10:36am

Heather, HUGS!

 

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