anna hayward

Hi Bob,


That is correct - but then again, doctors can be wrong and frequently
are. Parents are the only ones who can know some things ;o)

How much he will regress (or even that he will regress) is unknown.
However, you can't assume this will involve any suffering on his part -
most profoundly autistic people that I know are actually pretty happy,
in their own way. It's only awful to us because we can imagine a
different world - your son probably can't. Try to find other families
with CDD children in your area and network with them - seeing them
coping and seeing their kids should help you to come to terms with what
has happened. After all, your son hasn't changed who he fundamentally is
- he's the same person he was before the diagnosis: he may lose some
skills, but he's still his own unique little person.


I have had experience with this disorder because my mother has worked in
a "High Dependency" unit with various kinds of profoundly autistic
people and I've volunteered there. Also, I have a good friend with a
profoundly disabled child who is also autistic, and regressing due to
severe epilepsy. It's a tough call to parent a severely disabled child
and you are going to need support.

I suggest you have a look around for support groups for parents of
profound or severely disabled children in your area - don't worry if
it's autism or something else because I suspect you have more in common
with them than a bunch of parents of HFA kids. You are going to need
support from people who can empathise with your situation - people
who've walked the path you are now walking.

You are also going to need practical things, particularly as your child
gets older: disability welfare benefits, respite care, specialist
education, possibly lifting equipment and adaptations to your home to
maximise your child's independence. The list is probably quite daunting
but I suggest you start finding out as much about *everything* as soon
as possible - no one gives you the help, you have to go out there and
fight for it (on behalf of your child). Again, parents of severely
disabled children are going to be an invaluable resource for this sort
of thing.

I understand that what you are experiencing is a kind of bereavement,
but your son is still very much here and is going to need you to be
strong for him. As is your wife, by the sounds of it. The more services,
equipment, therapies etc. you get in place, the better your child's
quality of life is likely to be (and I include things to help *your
quality of life* in that, since that will ensure your sanity, and your
sanity is vital to your child), so please don't waste time getting
everything in place. You may not be able to cure CDD, but you can give
your child a good life.

Good luck!

--
Anna Hayward, Alien Visitor
mailto: alienvisitor@ratbag.demon.co.uk

Anna's Pregnancy, Parenting and Autism page:
http://www.ratbag.demon.co.uk/anna/

oscar

I am at 80 mg Prozac/day, and 3 tablets of Kalma at 1g.

Urbanyl does not exist in Autsralia and (Lexomil, Xanax, Valium) have a
paradoxical effect on me. I am going bak home to France (after I finished my
doctoral degree in business) in 3 months. But I feel down and I attempted a
suicide (I hate to suffer anymore; people think I am crazy but the
interanlal pain is real) can anyone help me please.

Oscar

vicky

Hi Bob,

In some ways your son sounds similar to mine.. When my son was
evaluated for Autism, on the questionnaire it asked about regression.
From what I understand regression is common in autism at just around
the age you mentioned and so that is one of the signs autism experts
look for.

There is a book you might want to pick up called the "World of the
Autistic child" it's by Bryna Siegel PHD... She is the leading Dr who is
at the PDD clinic in San Francisco. She seems to know her stuff well on
autism... since I live by San Francisco we have access to some of the
leading diagnosticians in the Autism field... There are other Big names
of Drs. around the country that I am familiar with... I guess I could
look up the Mapleton center and see where you are located and maybe
throw out some names to you of Drs. who specialize in the Pervasive
Developmental disorders....

It seems to me that Dr. Rimland (another old autism specialist) has
wrote expensively on the phenomenon of regression in Autism. Nobody
knows why it happens but it is a common indicator of autism.

The thing with regression happened with my son too and around age six
it started to swing the other way, and he had continuous gains in speech
ect.... He is fully verbal now... he's 11....

Sometimes at the age your son is it will seem like two steps forward
and two steps back.

I will try and look into resources for you Bob,
Best wishes
Vicky

bob sargent

God I still hope they are wrong. We will do everything we can to help our
little guy advance in any way he can.


He is at that, and he is a wonderful little boy. He is beautiful, bright,
clever, loving ... full of life. He does seem pretty happy most of the time
.... but is also showing more signs of frustration.

Anna, thank you very much for all of the kind words and advice. I am happy
to report that my wife and I have spent a few long nights deciding that we
really do need each other right now, and maybe, just maybe, this will bring
us closer together. I think the gravity of the situation has finally hit
her as well, which in a strange way has helped me. You are right about
needing to find others who are dealing with or have dealt with this sort of
thing. I doubt that too many folks who haven't can really, really relate to
what we are going through. I still float between utter devastation and
hopefulness. I need more hope. My little boy needs more hope.

Thank you again. I really do appreciate the advice and experiences shared i
n here, at any level. I am learning daily. I know there isn't a silver
bullet out there, but I just wish there was some formula or roadmap for my
little boy's best chance at success.

This whole thing has utterly changed my entire outlook on life. I have not
watched TV, other than Clifford or some other PBS Kids program with Nathan,
in several months. I was addicted to sports, particularly hockey, and
suddenly they just seem so meaningless. I am embarrassed that my
perspective on things wasn't more clear before ... I always knew my kids
were the number one priority, but that didn't stop me from sitting in front
of the tube and watching hockey when I should have been playing with my boy.
It should not have taken this for me to wake up and see how important that
time was. The best ending in all of this would be, and I guess this is my
real life dream right now (not a bigger house, not more money, not the
Avalanche winning another Cup, not anything else), is that the diagnosis for
Nathan was wrong and he ends up being a high functioning autistic leading a
pretty normal life (or that the diagnosis was correct but he beats the
odds), my little girl stays healthy and happy, my wife and I are brought
closer together, and I have changed for the better. That is my dream ...
period. If I see Nathan graduate from high school someday (and Natalie too,
of course), I'll be the happiest man on the planet. Just seeing him take
positive steps, learning to read and write, taking interest in more
activities, whatever, will make me happy.

Sorry to ramble. I guess I am also using this ng as a sounding board or for
some sort of therapy. I have just been so impressed by the thoughtfulness
and overall caring nature of many of the people here. Thank you again very
much.

vicky

Bob,
I am going to quote from Dr Bryna Siegels Book "The world of the
Autistic child" and these couple of paragraphs are on

Language Loss
About one quarter of parents with autistic children report that their
child initially seemed to develop language normally, only to stall, or
lose it entirely, a few months later. There are typical patterns of
early language loss. In one, the child develops a small vocabulary,
usually of ten to twenty words or short phrases, which then disappear
entirely.

The second pattern is one in which the child develops the same small
number of words, but then vocabulary size seems to plateau rather than
grow; and when new words are learned, old ones seem lost. Words a child
might be expected to use daily, like bottle are perhaps only heard only
once a week or once a month.

Typically language loss begins around ages fif**** to twenty two
months and lasts several months or until speech therapy begins or in
some cases is permanent. Careful examination of the histories of some
children with language loss suggests that other "developmental setbacks"
maybe occurring at the same time. These may include less eye contact, a
decrease in sociability (such as the child suddenly not minding being
left alone in his playpen or when others leave the room", and a loss of
interest in toys. This phenomenon is often described in the
developmental histories of autistic children, but it is poorly
understood. Some parents link the change they see in their child to a
illness (such as high fever), some injury (for example, falling off a
swing onto the head), some to a emotional trauma (for instance, the
father leaving the home); some suspect physical or emotional abuse (they
wonder whether the child was maltreated in daycare) and some voice a
concern that the child was pushed too hard developmentally (for example,
by moving him from a crib to a bed too soon).

Because parents offer such a range of explanations, it makes a
clinician skeptical of any one of them-- and turn to explanations that
might be super ordinate, such as a developmental failure of a
neurological process, or activation of some dormant virus. The pattern
of early language loss and other developmental set backs that may
accompany it remains unexplained, but we do know that when it is
experienced by children with autism or PDD, the language, that
re-emerges after the loss (or plateau) tends to be characteristically
autistic in the ways that will now be explained.....

Vicky's note..... here, I have to say Bob that my sons language was
very similar to your sons, at three he could say all kinds of things and
count and say almost the same things as your son was saying,,,,, and he
was asking or starting to ask questions and then it stopped seemingly
all of a sudden or over a few months... he said less, and began to
tantrum and became picky with what he ate, all around it seemed as
though he was morhping into something else entirely than the happy
little guy who would make us laugh by doing silly things to get us to
smile and laugh,,,, he was virtually going within himself... or so it
seemed.. at the time.

Vicky

anna hayward

Hi Bob,


I'm sure, but sometimes a little frustration can be the motivation to
learn new things - my HFA son is getting very frustrated because he's
the only kid in his autistic class who isn't beginning to read. Rather
ironic, as he used to be hyperlexic when he was a tot. Now he simply
cannot understand the concept of letters and phonems and he has tantrums
when he tries. But I remember the same sort of frustration when I tried
to learn to talk, and when he tried to learn to use the potty - each of
life's stages can be a source of frustration, but that frustration can
be a force for good. At least our kids are *trying* to do something they
find difficult - it's when they're passive you want to worry! ;o)


It's strange - the couples I know dealing with severe disability are
either the closest couples you ever see, or they get divorced. There
doesn't seem to be any half measures.

I think you've hit the nail on the head. I suspect when you get in
contact with these other families you may find that hope has a different
form to what you'd expect. It seems to me that the one thing that
overwhelms families new to this is the (false) belief that they'll never
have a sense of pride in their child's achievements, they'll never have
fun with their child and they'll never feel "normal" again. In the
majority of cases, even when disability or illness is severe, that is
not the case. In fact, many parents have told me that their profoundly
disabled child has brought a lot of joy into their lives, as well as
sadness.


I understand, but even if there were it could be a very misleading map.
All you can do is take one step at a time and do the best you can do at
the time. If there was a magic cure out there, or therapy that would
guarantee an improvement, there would be no CDD children out there, so
whatever therapies or treatments you choose, always bear that in mind.
Your child's happiness is at least as important as what he can be taught
to do. The one thing about a diagnosis like CDD is that it may (in the
long-run) help you to accept your son as he is, and not strive unduly to
"fix" him, regardless of his happiness.


Our child is somewhat less disabled than your son, although he's pretty
high-intensity. However, I relate to what you are saying. I think it
does help you realise what's important in life: love, loyalty,
friendship... You meet many fantastic people when you have a disabled
child that perhaps you would not have met otherwise, and you learn
assertiveness and determination of which you never knew you were
capable!


Regrets are a waste of energy - focus on how you can enjoy your child
*now*. He needs a dad who is positive and accepting, not worrying about
what he should have done or should not have done.


It could still come true, but even if Nathan isn't so high functioning,
but wasn't a severe case of CDD, that would be great too. It seems
strange to me now to think that I used to worry about how high
functioning (or otherwise) my son would be. As each month passes, it's
becoming more and more irrelevant. Some things he does better at, some
things he doesn't do so well at. We thought he'd love swimming and hate
horse riding; he hates swimming and loves horse riding, so what do I
know? ;o) We don't compare him to mainstream kids any more - at least
not often. When we do, it's usually just surprise ("Wow, I didn't know
normal 5 year olds could do that!") and doesn't any longer cause any
twinges.

It probably sounds a weird thing to say, but there is a strange kind of
comfort in knowing your kid is on a different track to other kids
because you can't fret, comparing them to other kids. For instance, I
worry what reading book my 8yo NT is up to, and how she's doing compared
to the rest of the class, and whether she ought to be able to swim or
ride a bike without training wheels by now. I don't worry about that
sort of stuff with Sam because he might do it, or he might not; he might
do something age-appropriately, or never, or on his own time-table. And
since nothing's a given, we are really thrilled when he does *anything*
new, whenever he does it, but since he has regressed in some respects,
and still could some more, we can't assume that skill is here to stay
either. So we try to live in the moment and enjoy what is *now* and not
worry about tomorrow.


Simple things make parents of disabled children happy, I find. Sam
flushing the toilet for himself, or drawing a recognisable picture for
the first time (a few months ago, aged 5yo) or putting on his own socks
have been events of great significance in this household. So, your son
may never graduate from High School, but I'm sure he'll do other things
that will make you proud - and who cares what other parents, who don't
have "special" children may think about those achievements!


It's fine to vent on this NG, but in addition you need to join up with
those CDD groups or severe disability groups to hook up with people who
can truly understand your situations.

All the best to all of you!
--
Anna Hayward, Alien Visitor
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