Re: A Few Questions & Responses to Start the New Year

[Guest guest]

Hi and ,

We can totally relate to your feelings about Christmas. This time last year

we felt the same way. Our son just looked over all the gifts and was

completely disinterested. We had to make him, hand over hand, unwrap the

gifts and hang on to him long enough to try to even get him to look at the

present before he would run away. At the same time we had to try and be

happy for our other two children who were loving the whole day. It was

really depressing. Our son has been on the protocol for seven months now and

although we still have a long way to go, Christmas this year was wonderful.

First he pulled each toy from his stocking himself and looked at it and

played for a few minutes before reaching in and getting another. Then he

came downstairs and ran to the unwrapped toy from Santa and laughed and

smiled and danced with it for most of the day. He also ran to his

grandparents and gave them big hugs, usually he doesn't notice them. It was

a great day all round.

I really believe that you will find that happiness, and what better way to

look forward and start a new year than with the knowledge that there is hope

for you child.

Sincerely,

A Few Questions & Responses to Start the New Year

> Hi Everyone,

>

> We have been trying to recover emotionally from Christmas---this was

> the worst Christmas we've had since our son was born in 10/00,

> because this year---we actually realize there is this " problem " and

> his development is so noticeably off track from other 26 month olds.

> All of our friends children were racing to open presents and calling

> out " Hi Santa " and our son just didn't get it at all. It was just a

> painful reminder that this " " or in " old language " PDD.NOS robs

> you of so many experiences with your child. So we just take down the

> tree and pray that next Christmas will be different---once we see Dr.

> Goldberg.

>

> In reviewing some recent postings---we wanted to say that our son

> definately has " hyperlexic " skills. He has always been drawn to

> letters and numbers and shapes. He can be redirected, but this is

> definately a big draw for him. Dr. Greenspan's partner, Dr. Weider

> did not think our son was necessarily " stimming " off the numbers and

> letters. She thinks that they are a comforting, consistent presence

> in a " world that seems overwhelming or confusing " to him. She also

> said that as his language improves (he's non-verbal now) this will

> likely phase out somewhat. She also reminded us that it is the one

> thing he really understands/enjoys and can therefore form a " common

> bond/communication " around with other people. He loves to show you

> license plates and house addresses and have you join him in his

> excitement about " what is that number. "

>

> As for the posts about children not " fitting " the typical

> profile with respect to illness history (ear infections, colds) or

> vaccine reactions (fever, lethargy)---we can totally relate. Our

> son's " PDD.NOS " autistic-like symptoms fit the descriptions very

> well. However, his medical history does not. He developed normally

> until age 12 months with 1-3 words and normal behaviors. He was

> never on antibiotics and has no history of ear infections. He had

> one episode of the croup at 12 months---put on steroid inhalers for 3

> days with no noticeable reaction. He never had a " visable " reaction

> after his vaccines---ALTHOUGH WE STRONGLY BELIEVE THAT THE

> PRESERVATIVE THIMERISOL IS A NEUROLOGICAL TOXIN AND MAY

> POISON/TRIGGER THESE symptoms in some kids.

>

> Our son stopped developing language at 13 months and the " odd "

> behaviors slowly revealed themselves between 15-18 months. Luckily,

> he did not have continued regression past 18 months---and began to

> level out with interventions (ST/OT). We also started floortime at

> home 2 months ago and think it is the " key way " to interact with

> him. However, he is definately " stuck " at around the 15 month level

> with speech/motor skills, play capacity (concrete vs symbolic) and

> peer interactions.

>

> Our prayer for 2003 is that we get an appointment with Dr. Goldberg,

> that our son's labs point to " something " that we can focus on---

> although we are fearful that his labs will all come back normal and

> we will have lost the one potential " miracle " that could bring him

> back to us.

>

> We look forward to learning, helping and interacting with all of you

> in the coming year. May it be the year we get our children on the

> road to recovery.

>

> and

>

>

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

>

>

[Guest guest]

and ,

I can relate to how you are feeling. I just wanted to share with you that

this Christmas (11 months after seeing Dr. Goldberg for the first time) was

the best Christmas we have ever had. It was the first time I was able to

let the kids put the ornaments on the tree without having them run off with

them or handle them roughly, etc. They always wanted to help put the

ornaments on, and every year I would try to let them, but it was always very

stressful. Last year at Christmas we removed milk from our " NT " oldest

son's diet (we had already removed it from our child who is seeing Dr. G.).

Over that holiday, I saw my oldest transform from a oppositional,

hyperactive personality to the joy he is now. The one who sees Dr. G has

made beautiful progress in the past year.

I remember struggling to think what to by for my hyperlexic (dx PDD/NOS)

child. I wanted to buy him TOYS, but he didn't play with them. We didn't

understand what was really going on with him until he was 5. I remember

feeling very sad that he was not enjoying the things other kids his age did.

This year was so different. We turned on Christmas music and everyone (even

my 2 year old) gleefully put the ornaments carefully on the tree. My oldest

was given the responsibility of hanging the most fragile ones high up. Last

year I would not have let him near anything glass!

I was so touched by the simple pleasure of decorating the tree together that

I cried.

I hope that your next Christmas is a lovely one. Things can get better.

One of the greatest things finding out about has done for me is that it

has given me hope. Here's to hope for a better Christmas for you next year.

Caroline

> On 1/1/03 4:54 PM, " pbleahy8 <PBLeahy8@...> " <PBLeahy8@...> wrote:

> We have been trying to recover emotionally from Christmas---this was

> the worst Christmas we've had since our son was born in 10/00,

> because this year---we actually realize there is this " problem " and

> his development is so noticeably off track from other 26 month olds.

> All of our friends children were racing to open presents and calling

> out " Hi Santa " and our son just didn't get it at all. It was just a

> painful reminder that this " " or in " old language " PDD.NOS robs

> you of so many experiences with your child. So we just take down the

> tree and pray that next Christmas will be different---once we see Dr.

> Goldberg.

[Guest guest]

Hi, and ,

I just want to say that your experience sounds all too familiar. I remember my

son's painful second and third birthdays, his second and third Chanukah, etc.,

with him overwhelmed and just not " getting it " , while all the other kids were

doing exactly as you describe. does indeed rob you of so many of the

experiences with your child that parents of unaffected children take for

granted. But I am here to tell you, those experiences will come! For the first

time ever, I watched my little boy, who has been on the protocol for only 6

months and will be 5 at the end of February, running to sit on Santa's lap at

the mall, excitedly opening presents, oohing and aahing over our menorah and the

neighborhood Christmas decorations, and happily delivering presents to family

members and friends. Plus, you wouldn't believe this former picky eater's

new-found appetite. I cried all month -- with joy!

You and your child are so fortunate to have found while he is so young. It

will be easier and take a much shorter time for him to recover, and from reading

your son's history, I am sure that is indeed what you are dealing with.

Every parent worries that their child will be " the one that can't be helped " .

Try not to worry. Your son has an awesome chance of making a FULL recovery!

As for getting an appointment, if you haven't already, call the office and have

them send you the paperwork. Once you send it back in, call and get on their

cancellation list. You are more likely to get in sooner. When we first called

the office for our son back in April, we were told that we wouldn't be able to

get an appointment until November. But once I got the paperwork in, I asked to

be notified if there were any cancellations, and they called me TWO weeks later,

for an appointment THREE weeks after that!

Good luck and welcome to the list! You will find so much support and

information here.

Donna

A Few Questions & Responses to Start the New Year

Hi Everyone,

We have been trying to recover emotionally from Christmas---this was

the worst Christmas we've had since our son was born in 10/00,

because this year---we actually realize there is this " problem " and

his development is so noticeably off track from other 26 month olds.

All of our friends children were racing to open presents and calling

out " Hi Santa " and our son just didn't get it at all. It was just a

painful reminder that this " " or in " old language " PDD.NOS robs

you of so many experiences with your child. So we just take down the

tree and pray that next Christmas will be different---once we see Dr.

Goldberg.

In reviewing some recent postings---we wanted to say that our son

definately has " hyperlexic " skills. He has always been drawn to

letters and numbers and shapes. He can be redirected, but this is

definately a big draw for him. Dr. Greenspan's partner, Dr. Weider

did not think our son was necessarily " stimming " off the numbers and

letters. She thinks that they are a comforting, consistent presence

in a " world that seems overwhelming or confusing " to him. She also

said that as his language improves (he's non-verbal now) this will

likely phase out somewhat. She also reminded us that it is the one

thing he really understands/enjoys and can therefore form a " common

bond/communication " around with other people. He loves to show you

license plates and house addresses and have you join him in his

excitement about " what is that number. "

As for the posts about children not " fitting " the typical

profile with respect to illness history (ear infections, colds) or

vaccine reactions (fever, lethargy)---we can totally relate. Our

son's " PDD.NOS " autistic-like symptoms fit the descriptions very

well. However, his medical history does not. He developed normally

until age 12 months with 1-3 words and normal behaviors. He was

never on antibiotics and has no history of ear infections. He had

one episode of the croup at 12 months---put on steroid inhalers for 3

days with no noticeable reaction. He never had a " visable " reaction

after his vaccines---ALTHOUGH WE STRONGLY BELIEVE THAT THE

PRESERVATIVE THIMERISOL IS A NEUROLOGICAL TOXIN AND MAY

POISON/TRIGGER THESE symptoms in some kids.

Our son stopped developing language at 13 months and the " odd "

behaviors slowly revealed themselves between 15-18 months. Luckily,

he did not have continued regression past 18 months---and began to

level out with interventions (ST/OT). We also started floortime at

home 2 months ago and think it is the " key way " to interact with

him. However, he is definately " stuck " at around the 15 month level

with speech/motor skills, play capacity (concrete vs symbolic) and

peer interactions.

Our prayer for 2003 is that we get an appointment with Dr. Goldberg,

that our son's labs point to " something " that we can focus on---

although we are fearful that his labs will all come back normal and

we will have lost the one potential " miracle " that could bring him

back to us.

We look forward to learning, helping and interacting with all of you

in the coming year. May it be the year we get our children on the

road to recovery.

and

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.