Hey, all.

iVillage Member
Registered: 09-23-2004
Hey, all.
9
Thu, 05-04-2006 - 10:14pm

I found out yesterday my sons autism is severe.

Also, there are needs to be a cat scan and lab work done to see if there may be underlying problems as well.

I am having trouble dealing with the fact my sons autism is severe because I'm not sure what to do for him.

Last night, I cried myself to sleep.

~ Darla

iVillage Member
Registered: 03-26-2003
Fri, 05-05-2006 - 12:22am

Hugs Darla.

I am so sorry you are feeling down and got bad news. How old is your son? Who and why did they decide he was severe? It can be so hard to tell with kids. You never know their potential. Autism scales are usually checklists which are filled out, they never can truly speak to who a whole child is. It is just a rating on a scale. Today he may score as severe, but in a month or year it may end up more moderate or mild.

It can be overwhelming knowing what to do for them. When I get overwhelmed I try to break it down to small do-able steps. Think of 1 thing you would like to do for him and get that accomplished and check it off. Autism is a marathon run, not a sprint, so pace yourself. Start with the medical tests they want done. Next, get the assessments done by early intervention or the school district depending on his age adn get him starting in therapy. Those are your first steps of what to do.

And also, right now, get some sort of support for yourself. Be it counselling, a support group or a hobby you enjoy. Take care of mom first. If you are not healthy and well you cannot help him. If mom aint happy, no one is happy.

(((HUGS)))) again.

Renee

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iVillage Member
Registered: 05-16-2003
Fri, 05-05-2006 - 6:19am

Oh, Darla. I am so, so sorry for your pain.

I like Renee's advice. I always feel better when I am doing something for my child (or just getting the house in order).

Feel free to reach out to us... try and find ways (I know it's hard) to rejeuvenate yourself, too. Whatever it takes -- a nice bath, 10 minutes with a book.

Take care,
Cathy

iVillage Member
Registered: 10-03-2004
Fri, 05-05-2006 - 8:29am

Dear Darla,

I join the other posters in saying how much we understand how this hurts, how frightened you are, and we are here to help if we can. Your child must be quite young, I am guessing, because that is when it is so hard to tell about autism. If you are comfortable with it, let us know more about you, what resources you know about, how things are going.

And what Renee said is true, numbers on tests are only a beginning, they say nothing to the potential of where a child can go and what his future life will be like. Remember, noone can really know that anyways, even if the child tests completely "normal".

My son is almost 9, and has been in years of therapy and assistance now. He is smart, verbal, funny, learning how to be VERY independent. But when he was almost 3, a doctor told us that he might have severe mental retardation based on one test given where he did not do well. We KNEW that was wrong, cuz we knew how smart he was... and we were right, as it turns out, he is VERY smart, schoolwork is a breeze to him. And IQ tests are inaccurately low for ASD kids anyways...

Anyways, you are welcome here. Noone wants to join this club, but support will prove invaluable to you and we are here to give you as much as you will accept!

yours,

Sara
ilovemalcolm

iVillage Member
Registered: 08-26-2005
Fri, 05-05-2006 - 12:26pm
Darla
((HUGS))
I have cried myself to sleep many nights right after Jakes diagnosis and from time to time I still have a good cry. I think it's just all apart of the process of coming to terms with everything. Now I try to just take one step at a time and like everyone else said tackle one issue at a time. Have you had more than one evaluation? It really is amazing how much therapy can help and what our kids can achieve with the right help. Hang in there!
Teresa
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Registered: 01-19-2005
Fri, 05-05-2006 - 2:07pm

Hi Darla,

I am sending you more hugs. Renee gave very good advice and it's okay to be sad about this for awhile. Do try to do something nice for yourself, and do talk about you feel to someone who you think can be sympathetic.

I also wanted to say when my son was first diagnosed at 18 mos. he was considered "moderate" then after a few months of speech therapy and occupational therapy he was considered "high functioning" and now, after 2 years of therapy and special ed pre-school, some feel he might even have Asperger's, although technically he can't have that bc he had a speech delay. So the diagnosis can change all the time.

Also, there was a study that recently came out that said IQ tests are not really reliable for ASD kids bc they are verbally biased. If they were more "visual" our kids might do better.

What someone told me, similar to what Renee said is try not to focus on the diagnosis but on what your child needs. It is easier to break it into small steps.

Also, your child is still your little sweetie pie whom you adore and love with all your heart and no diagnosis will change that. Just the power of your love can do great things, no matter what any professional may tell you.

More hugs, love,
Katherine

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Registered: 03-25-2003
Fri, 05-05-2006 - 10:00pm

(((((Darla))))))


I just found out my son isn't severe, and I don't know what to do for him either!

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Registered: 06-25-2003
Sat, 05-06-2006 - 9:39pm

((((((((((Darla))))))))),

I'm chiming in very late here, sorry.

"I'm not sure what to do for him"

Yep. BTDT, bought the t-shirt. That shirt became a duster long ago.

You do know what to do for him, but probably not at a concious level yet. Follow your instinct. Research, read and learn as much as you can. Stop comparing him to other kids, and only compare him to himself in the past, and most importantly: Trust what your heart tells you about your son's abilities, not what 'they' say.

Because 'they' don't know.

Don't get me wrong: 'They' have their uses. 'They' can give you some useful reports and information; very helpful in getting services for your son. 'They' can identify issues which you have not heard of and give you some useful information, guidelines and pointers. They often don't have the answers, (although they *think* they do) but they can show you where to look for yourself. Some of 'them' are brilliant, caring individuals, with excellent insights -usually these ones are lower on the totem pole (IME). You will learn to recognise those ones and listen to them.

But 'they' can't predict the future, and tests are indicators, not Gospel, especially in younger kids.

'They' told me my son was borderline MR. That might forever need special school. That he may never gain functional language. To have him tested for Fragile X and other invasive stuff. Not to start a college fund for him. That "no regresssion" was equal to "progress".

Peter, myself and time proved 'them' wrong. Now my 'borderline MR'(sic) kid, who finally gained functional language at 4¼yo is almost 8yo, in 2nd grade and holding his own in regular Ed math. He will start more mainstreaming next year. His language is still behind, but he reads at grade level, is an original thinker, and has excellent natural ability in deductive reasoning. People often don't believe me when I tell them his has Autism, because he is so social, outgoing and related (when happy!).

His ambition is to become a rocket scientist and invent a car you can fly into space. I don't doubt his ability to achieve this, if that's what he really wants to do. 'They' might disagree but *I* know they're wrong.

He has the college find to prove it.

Welcome to the board. Please tell us more about yourself and you son. We look forward to knowing you both better.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-26-2003
Sun, 05-07-2006 - 7:25am

Like everyone said -- stay strong for your child! Learn all that you can and cry cry and cry -- we have all been there and they say that crying clears the mind -- so true. Hang in there Darla -- it may seem bleek now, but in time you will be able to help others that are in your shoes right now.

I truly believe that God gives you only what you can handle and that having a child that is autistic is a gift because it takes a special kind of person to raise and love an autistic child.

Things will get better over time -- at first it is really tough to understand. I have heard experts on the subject say that between the ages of initial dx and around the age of 10 are the hardest -- I am not sure how old your son is, but keep that in mind.

Stop by often for the support that you need.

Take care!

Amy

Amy
 
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Registered: 02-24-2004
Sun, 05-07-2006 - 2:32pm

Darla,

I have to say that I was speechless when I read your post. I can only imagine what you are feeling. I did want to offer hugs and support though. Please keep us updated, and remember that we are here for you.

michelle