New Member from NJ

[Guest guest]

Hi ,

I am a mom of an apraxic child and a teacher in Essex County. I think

I can clarify what your child study team might be telling you. The

child study team can not give a formal diagnosis for anything (I have

seen many children who I believed had various disorders!) We can refer

you to see your doctor since they are the ones qualified to diagnose.

The child study can classify and " label " a child as communication

impaired or SLD, etc based on the evaluiations from the speech

therapist, Learning Consultant or Psycholgist. You don't necessarily

need a formal diagnosis if their testing results qualify him for

special education. It does though make it easier to comply with all of

the new special ed law.

The best advise that I can give you is to be your child's strongest

advocate. Get to know the law inside and out, know your rights, get

independent opinions and DOCUMENT EVERYTHING!!! Follow up each meeting

with a letter of understanding stating what you discussed and any

points you agreed on and what is still being discussed. Tape record

meetings so that there are no " but you said " moments. Anything that

you submit in writing must be responded to in writing, so you'll have a

paper trail. Remember, you do not have to sign an IEP until you are

satisfied with it. You hold the power because they have to get you to

sign or take you to court (they will not want to do that...been there!)

So as long as you are having dialogue they will continue to negotiate

with you.

Of course, you have to be reasonable and have documentation to back

you up. Each time I requested something, I gave a reason that I could

back up with letters or testing results from my Developmental

Pediatrician and/or private speech therapist. For example, I requested

daily individual speech for my son. They offered much less. I refused

to agree to that and provided documentation from my doctor and then

requested an independent eval. The independent evaluator agreed with

me and now he receives 4 individual (he only goes to public preschool

4 days a week) and 1 in class session. It has made a huge difference!

If you reach an impasse, you can also schedule meetings with the

director of special services or superintendent. You should have been

given a " chain of command " in your parental rights pack.

Remember...squeaky wheels get the oil!! Feel free to email me

privately if you need more help!

Kate

Subject: a new member from NJ

Hi

My name is and I live in Essex County. I have joined this

group because I need to get as much support and information regarding

apraxia. My son 6 years old, has apraxia. We noticed 's

speech delay when he was 2 and he started receiving early

intervention 3 months before turning 3 years old. Unfortunately,

's speech issues were put on hold. When he turned 3 he started

having seizures. He has severe epilepsy. After 7 months of being in

and out of the hospital and trying many medications, we started

on the ketogenic diet. To make a long story short, after almost 3

years and no medication, I am happy to say that his seizures are

controlled with the diet alone. My focus for was always the

seizures first, but now that he is doing well, we have to conquer the

speech problem. Our neurologist, who is at Children's Hospital in

Philadelphia, is very concerned with his speech. She told me she

cannot understand him. I can understand him most of the time(but I'm

his mother) but their are times that I can not and he gets very

upset.

I am having him re-evaluated for speech through his school. I was

told by the speech therapist that she would not be able to diagnose

him with apraxia for law reasons. I asked them why and the child

study team could not really give a reason. I thought this was odd.

Then the case manager said he thought that would have to come from a

neurologist but didn't say why. Has anyone ever heard of this?

I was hoping by joining this site, I could connect with other

parents, who have gone through this journey and get support and

advice with dealing with the apraxia and also with the school system.

Thank you for allowing my to join this group. Any input, is greatly

appreciated.