Clayton current Early intervention evaluation

[Guest guest]

Hi all:

Things have still not calmed down since CLaytons fundo and g-tube surgery last

month - although we are getting more accoustomed to the tube feedings and he

seems to be tolerating the feeds well. On the other hand he is still having

some developmental delays.

Had early intervention here yesterday to do a re-evaluation of Clayton and we

were not happy. (the had orginally discharged him 4 months ago saying that he

was fine - we knew he still had delays - but they were discharging his twin

Cole (who was fine) and it was clear that they mainly discharged Clayton to

save money even though the actually expressed some major concerns about

Clayton at that time. My neuro wrote them a nasty letter and thus a new

evaluation (actually updated evaluation).

Within 5 minutes they were in shock that they had discharged Clayton (I would

love to sue) because he had so many delays - and had apparently lost skills.

He is now 17 months and this is what the evaluation said:

Gross motor - 15 month level but concerns include instability (wide stance)

which may hinder higher level skills.

Fine Motor - 7-8 month level - decreased attenbtion span hindered testing

Sensory - hypersensitivity to sound, heat, touch

Cognitive - Claytons attention to presented tasks was very fleeting and he

successfully complete many of the presented tasks, Some skills were observed

in the 10-12 month level

Communication - skills through 10 months - he is beginning to follow simple

instructions when he is calm.

Expressive - skills through the 9 month level

Adative/self help - feeding - 9-11 months

- dressing emergining 12 months

Early intervention services to focus on:

1) increased attention span and play skills

2) strategies to increase language skills

3) Address feeding when medically able

4) strategies to develop fine motor skills

5) balance activities to promote improved motor development

6) strategies to assist Clayton in improving social interactions and decrease

clingeness to mom.

All in all a fun day. And can you believe that someone actually tried to

discharge my child from receiving early intervention services?

Any thoughts and comments would be greatly appreciated. We are now waiting to

schedule our IFSP.

love,

sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

and Clayton (eosinophil gastroenteritis, food allergies, g-tube, Nissen and

possible latex allergy, some dd and undiagnosed neuro issues)

[Guest guest]

Sharon-

At 6 months, I took Remi in for an eval. They didn't even test her but

just asked me questions. They said she was fine.

After months of waiting, Remi was re-eval at 18 months. Remi's and Claytons

results look familiar. Remi was okay cognitively and had high receptive

language skills. Her expressive language, feeding, Gross motor skills -all

were about the same. Her expressive language was about 8 months. The one

that killed me was the feeding. Here was a child who ate 3 meals a day and

snacked and was at a 9 month level. Some of the skills/tasks she had never

seen or tried but eating??? While we were on the devastated side after 1.5

years of early intervention and 1 year of preschool handicapped-she caught

up enough to only get OT and PT on a PRN basis. We felt that if they

tested her earlier than it wouldn't have been as bad. That made me

extremely insistant on having Arissa tested and she did need some therapy too.

At least you got Clayton on the right track again. I know how it seems

like you are doing these little things, how are the all going to add up so

he can walk/talk/use his hands, but it does!! It is most definetly worth

the time and effort. Where does Clayton go? Remi went to Bancroft Early

Invention in Haddonfield. They have one of the better programs around. We

ended up their by mere luck and I found out about their success and

reputation afterward.

Good luck and think positive.

Phyllis-mom to

Arissa (12/22/95) EG, multiple food allergies, occasional asthma

Remi 6, Spina Bifida, developmental delays, allergies-nuts, shellfish and

latex

[Guest guest]

In a message dated 9/9/98 8:26:46 PM Central Daylight Time, SDidinsky@...

writes:

<< Any thoughts and comments would be greatly appreciated. We are now waiting

to

schedule our IFSP. >>

Sharon.

I would be furious with them. Are the services reinstated now? Ens early

intervention reassessment is in October. I hope it goes well.

Jane

[Guest guest]

In a message dated 98-09-09 22:54:25 EDT, you write:

<< At least you got Clayton on the right track again. I know how it seems

like you are doing these little things, how are the all going to add up so

he can walk/talk/use his hands, but it does!! It is most definetly worth

the time and effort. Where does Clayton go? Remi went to Bancroft Early

Invention in Haddonfield. They have one of the better programs around. We

ended up their by mere luck and I found out about their success and

reputation afterward. >>

Clayton used to go to Out Lady of Lourdes for EI but he will now be going to

Bancroft which does have the best program in this area. I told my social

worker/coordinator that is the only place I would go.

love,

sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

and Clayton (eosinophil gastroenteritis, food allergies, g-tube, Nissen and

possible latex allergy, some dd and undiagnosed neuro issues)

[Guest guest]

In a message dated 98-09-10 14:08:18 EDT, you write:

<< I would be furious with them. Are the services reinstated now? Ens early

intervention reassessment is in October. I hope it goes well. >>

Yes we will be getting services again. We will have his IFSP shortly and

discuss what services will be provided and when and how. I am furious but

right now I have to concentrate on Clayton getting the services that he needs.

love,

sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

and Clayton (eosinophil gastroenteritis, food allergies, g-tube, Nissen and

possible latex allergy, some dd and undiagnosed neuro issues)

[Guest guest]

Sharon-

Good luck with Dr. Sampson on Friday. Also, I wish you a safe trip up and

back without lots of traffic.

The people at Bancroft were so wonderful and accomadating. We wouldn't be

where we are without them-even with another EI program. Do you know when

you will start?

The nurse also thought that Duphalac was the brand name for lactaclose but

it is the generic. But all is okay. I even managed to get all of Arissa's

doses in today. I got hired to work at the kids school tonight. I will be

working in the preschool. (the school goes from 18 months thru 12th grade)

I will still have the school nurse do AJ's doses while she is there. She

is more cooperative for her and it is one less battle for us.

Phyllis-mom to

Arissa (12/22/95) EG, multiple food allergies, occasional asthma

Remi 6, Spina Bifida, developmental delays, allergies-nuts, shellfish and

latex