"Methinks the lady doth protest too much"

[alizesmom]

I think I need an embarassed smilie here. After all of my fussing about Ciara's behaviors and what to do about them, she was given the diagnosis of classic autism recently. Sorry if I have sounded . I'm really unprepared to cope with this right now. We have spent so much of her life just keeping her alive and now I somehow need to find a way to work new therapies into our lives. I am so overwhealmed that I can't stand it. I know how important this is for her but how can I do it? So far she gets PT, OT, ST, VT and just started behavioral therapy. She has had 6 surgeries since last Christmas, relies on a ventilator when sleeping, needs suctioned and is fed by g-tube 4-5 times a day. She sees cardiology, neurosurgery, ENT, pulmonology, gastroenterology, genetics and a physiatrist as well as her PCP. This does not make it right that I was denying the possibility of autism, actually I had been told by some evaluators that there was no way she could be on the spectrum because "she is too social". To those of you on the behavior thread, I'm sorry, I'm tired, I'm scared and I need your help. Karen

 

[C&G'sMama]

I'll start with

All I can say is IMHO you don't need an embarrassed smiley. You're a mom and from the sounds of it a pretty darn good one. We are here to vent to, cry with and smile with and over all to support each other. Your little girl has a lot going on and hence so do you.

Keep us posted.

-A

 

[bookwormde]

You have no need to be embarrassed; all of us have special children have been where you were at some point and to some level, even without having to deal with all the physiological issues that you have been managing.

Learning to understand her mind opens up immense opportunities for progress, which of course is a lot of work, but I know with the dedicated and wonderful person you are you are up to the task.

The fact that some people think she is too social is a good indication that she is probably on the upper end of the classic section of the spectrum, if not above, you will only know with time and when some of the non-autism related challenges subside.

As always if you have any questions or just want to vent we are all here for you.

bookwormde

 

[jodifla]

I think I need an embarassed smilie here. After all of my fussing about Ciara's behaviors and what to do about them, she was given the diagnosis of classic autism recently. Sorry if I have sounded . I'm really unprepared to cope with this right now. We have spent so much of her life just keeping her alive and now I somehow need to find a way to work new therapies into our lives. I am so overwhealmed that I can't stand it. I know how important this is for her but how can I do it? So far she gets PT, OT, ST, VT and just started behavioral therapy. She has had 6 surgeries since last Christmas, relies on a ventilator when sleeping, needs suctioned and is fed by g-tube 4-5 times a day. She sees cardiology, neurosurgery, ENT, pulmonology, gastroenterology, genetics and a physiatrist as well as her PCP. This does not make it right that I was denying the possibility of autism, actually I had been told by some evaluators that there was no way she could be on the spectrum because "she is too social". To those of you on the behavior thread, I'm sorry, I'm tired, I'm scared and I need your help. Karen

You and your daughter are certainly going through a lot! It must be so much to deal with.

A caution, though, on autism dxes: They are only as good as the person handing them out. There are those who would put our son on the spectrum, but that's not his issue. I'm on a message board with thousands of other parents, most of whose children have been misdiagnosed, their severe language issues confused with autism, retardation or several emotional disabilities. And a whole movie has been done on "Autistic-like: Graham's Story" about kids who have sensory processing disorder, not autism, with autism experts like Stanley Greenspan saying "We have to dx them with autism to get them services."

My son was having behavior issues at school...but, the school FINALLY instituted the proper positive behavior plan we asked for, and those behaviors have now subsideded greatly. It took no therapy....just a behaviorist who KNEW what she was doing (and, she followed the advice of the university teaching hospital where we take our son.)

So, I've found out the hard way the the quality of the professional working with our son is key. We wasted a lot of time and school years on crappy plans done by people who did NOT have the training they needed, but arrogantly THOUGHT they were right. And my son floundered as a consequence.

What kind of therapy are they suggesting for you daughter? And what do you think about this diagnosis, truly, in light of all her physical issues?

Once upon a time, being social DID rule out autism, but the Dx has wandered a lot over time.

You have no reason to be embarrassed no matter which way your journey goes. Every parent out there dealing with special needs is basically a pioneer, having to forge their own way with their children.

All the best to you and your daughter!

 

[ireland_nicole]

Don't be embarassed; we're all on a journey without a map. And sometimes we take some detours while we try to figure out our next step.

Autism is just a word. It doesn't change who your DD is today, or was last month. But it is a word that may help to offer insight and understanding into her spirit. She is so much more than the A word. And you know what? You won't fit in every therapy, and every diet, and every treatment. Sometimes it won't feel right to you, sometimes you'll be just to darn tired, sometimes you'll be doing something for another dx that makes it contraindicated.

And it's OK. Every treatment in the world isn't going to "fix" her. She is who she is. And everyday your going to get up and do the best you can, because you love her; just like you always have. And that WILL be good enough.

 

[MinnieVanMom]

Don't be embarassed; we're all on a journey without a map. And sometimes we take some detours while we try to figure out our next step.

Autism is just a word. It doesn't change who your DD is today, or was last month. But it is a word that may help to offer insight and understanding into her spirit. She is so much more than the A word. And you know what? You won't fit in every therapy, and every diet, and every treatment. Sometimes it won't feel right to you, sometimes you'll be just to darn tired, sometimes you'll be doing something for another dx that makes it contraindicated.

And it's OK. Every treatment in the world isn't going to "fix" her. She is who she is. And everyday your going to get up and do the best you can, because you love her; just like you always have. And that WILL be good enough.

Nicole,
I am moved by your response. It is perfect and so true.

 

[alizesmom]

Thanks everyone. I know there is no "fix" out there and it won't change how we love Ciara. I just had set my hopes on her behaviors going away when we improved all of her physical issues and found a way for her to communicate. Now I know this is going to be a long, slow journey. Karen

 

[ireland_nicole]

Thanks everyone. I know there is no "fix" out there and it won't change how we love Ciara. I just had set my hopes on her behaviors going away when we improved all of her physical issues and found a way for her to communicate. Now I know this is going to be a long, slow journey. Karen

 

[bookwormde]

I know it is hard to relate to now, but as important as it is to understand how some of the challenges that you are facing are related to Autism genetics, it is more important to understand the gifts that come along with these genetics and nurture them when the time is right.

bookwormde

 

[KirstenB]

I'm sorry you're having to deal with this. All of us with ASD kids, or similar dx's can sympathize with how you feel. I remember when our younger dd was dx'd I brought her home and put her down for a nap. I'm ashamed to admit, I half expected to find a green hobgoblin in the crib when I woke her.

She was still the same gorgeous little girl. All that had changed was now I had a starting point on how to help her. I don't know what therapies, or advice you've been given. However, I found Dr. STanley Greenspan's books to be very helpful in working with Zoe. We're 2 1/2 yrs into this dx, and sometimes it's still tough. I hope you know we're all here for you, whenever you need us.

 

[buzz for boys]

Hi,
I know that things here in the U.K are very different to the U.S but I totally relate to your post.
My ds has had cancer since he was 16 months old - he is now 8 and we have just finished the diagnosis process for autism. We have struggled so much to keep him alive that its a rather cruel blow to then find ot that no matter what treatment he has we wont ever get back the little boy we took in !!
I was told a while back that although we have not lost him we still need to go through a grieving process for the child we thought we would have !!
Thats not neccesary the autism isolated but everything we have endured with our precious son. If you google the five stages of grief you will se that this actually does make sense and im sure like I did you will be able to relate exactly where you are on the road to acceptance.
I send you a great big and hope that my rambling has offered you some comfort .

 

[LuvsTinker]