Really,really need to vent

[roxie29]

Recently my DS who is 2.5 yrs has been diagnosed with autism. This is based off of an MRI which showed some brain damage from being born premature and from his collective behaviors.

Today, I shared with DS's physical therapist that DS has totally regressed in his eating and now only takes liquids. DS PT says "DS has profound delays and has lots of issues, this is very concerning will he ever function normally?" PT's comments totally depressed me and I was already on edge as I have been feeling increasingly overwhelmed and depressed by DS diagnosis. I just felt that PT's comments were a little cruel because what am I suppose to do with that info? And I do not think my son is profoundly autistic. And if I am in denial about that then let me just have this time being in denial as it is the only hope I have that DS will be functional with Autism and have a wonderful life. I told my Dh what PT said and he was furious. He called the therapy office and complained. DH said that he knows I am very anxious about DS and trying to figure everything out everything. DH said this is the last thing I need to hear. I think DH is afraid that I will fall apart. I am determined not to fall apart. I am researching how to obtain funding for two schools for autistic kids that I hope DS will get into. Finding programs that might help DS keeps me going. I can never give up on my son but all of this is so difficult and emotionally draining. It is so hard to see your child struggle to do everything or not participate in activities that he should love. I also feel that once people hear that your son is autistic they treat him/us differently. It is like the expectation level for his life goes down in people's eyes. Or they feel extra sorry for us which is annoying. Okay, I have vented.

roxie

[chicadee1245]

Hon, I think normalcy is overrated. I have found that my normal is different from others. I have learned from my daughter to appreciate her small strides in her development.

Yes, the PT's statements were not the optimal remarks; BUT she may be just making them in response to your DS's regression and may not be schooled in having some tact.

Yes, you have fully functional ASD children and yes, you have children that are not and also a happy medium. YOU have to find that labels do NOT make your child and advocate for HIS best interest.

If I would have listened and/or analyzed every remark that was said about McKenna, I would have been so discouraged. You know your child the best and don't ever give up any hope that you have for him!!

[momla]

Things like this are hardest at first. I agree, that wasn't very tactful at all. She needed a filter right then and didn't have it or use it. As time passes, and wounds start to heal, there will still be times that things strike a chord with us but there are also times when we let things roll off of our backs easier. Gradually, the times where we take things in stride become more and the hurt becomes less. But, it never entirely goes away either. You have every right to be hurt by her comment. Today or 10 years from now. This is YOUR FAMILY'S journey. No one can tell you what should hurt and what shouldn't. But, the OT isn't gonna understand why it hurt b/c she, even as an OT, doesn't understand your hurt unless she is a mother of a SN child.

[CathyNY]

I do wish sometimes that more therapists and dev peds had autistic children themselves--if they did, if they knew the worries and uncertainties and frustrations, I think most of them would work harder to be tactful and kind. I do agree with Carla that these comments are hardest to hear at first. Of course I wonder about Nick's eventual outcome. . . but I think the best therapeutic advice I ever got came from a therapist in England who told me "You need to stop worrying about whether he will go to university and start focusing on teaching him to wash his hands." In other words, focus on those daily tasks and triumphs. Acknowledge your own feelings of grief and loss. This isn't what any of us signed up for and sometimes it's really, really difficult. And remember, we are always here for each other.

[Lori]

That is horrible! What a foolish thing for the PT to say!

Heck - my kid was profoundly autistic at that age. He was dx at 20 months and was very very low functioning.

He is mainstreamed now and doing quite well. Is he still ASD - SURE!!! But, huge improvements over the last 5+ years! ;-)

Lori

[Bernadette]

want to share something.
my son is moderate to severe autism.
at diagnosis, when he was only 26 mo old, I was told he wont speak until age 8 and won't potty train till age 10 ( approx)

it was all so much for me to hear and comprehend and I did become depressed. it's a long road you are on, and there is time to grieve. it's ok.

nobody knows whats really is store for our children. try to hear info but not dwell on it.
it does get easier. ...

and my son does speak and was potty trained at 5 ! I want to go back to that doctor and say you were WRONG !

hang in there....you are not alone !

[bayoubaby1]

Reading this sort of thing makes me furious...the medical community can say some really wrong things. My son began a regression around 16 months, and while he is still developmentally delayed a lot in some areas he IS progressing. While there is only so much that we CAN do to help, the mother in all of us here is a fighter...you will find the right things for your child and help every way that you can, I have no doubt of that fact. It is a long road and at times it can be very depressing, but I am learning that finding my son's strengths are what helps me to make it through each week. I was told a few months ago that my DS's visual processing and fine motor skills were so bad that he may never read or right...but I am NOT buying that for a minute...if he never does then at least it will not be because we did not try to help him. This is all so very new and the wounds are still raw, but it will get easier. It is okay to grieve, and you will do a lot of it but we cannot ever let it consume us. It is very draining, so please do vent when you need too. Hugs!!!!