Re: Question about Speech Therapist

[Guest guest]

Dear Jeanne,

Please don't give up. My son cried at each and every speech session for

almost three months. He did not like his EI class either. I cried every

day also!!! Then all of a sudden he started to make small progress and

things just took off from there. It's been six months and he's doing great.

He loves to go to school and likes to " play " with his therapist. His

therapist uses puzzels, games, bubbles, shape sorters and all kinds of

things to make it fun. She is also young and very perky and I think that

helps. You may have to switch therapists if you think that it is the right

thing to do.

Good Luck

[Guest guest]

My son started crying screaming refusing to go to

therapy and we decided it most be because she was

putting her hands in his mouth to do something can not

remember what it is called but we told him she would not

do that and he started going again then we gradually

worked that back in. So maybe if she therapist does just

a little of what he does not like then works up the

amount of time they work on what he does not like. Just

an idea of what worked for us.

Robyn

[Guest guest]

Thank you for your email, it feels good to know that my son isn't the

only one whose crying. Can you tell me if you where in the room with

your child and the speech therapist? The speech therapist thinks it " s

better that I'm not in the room but I think t makes it worse. I think he

cry even harder. How do I find a good speech therapist? I appreciate

any help.

Thank you

Jeanne

[Guest guest]

Hi Jeanne,

OK after reading some of the responses here, perhaps I'm the only one

who feels this way, but personally, I have a major problem with

forcing an apraxic-crying three year old to go to a speech

therapist. Jeanne, I don't know where you live, but please let us

know so we can help. There has GOT to be someone else you can go to

in your area.

It may not be that the therapist you have for your child now is bad,

(but maybe she is) but perhaps a personality conflict? Children with

apraxia have a long road of therapy ahead with three to five days a

week of therapy for years, and you don't want to burn them out when

they are still so little.

Is your child in the preschool disabled program? Is that where the

therapist is from? Or is it through insurance, or just private?

And to answer your question, either Glenn or myself have always been

in the room with Tanner for all of his therapy. For Dakota's too.

We were part of the " home therapy " team, so how would we know what to

do if we didn't observe.

I've seen just the opposite of your experience with Tanner. Tanner

has sensory integration disorder, and I don't have to explain

the " fits " to anyone else who has a child that has that, but if you

don't know what a SI fit is-then your child probably doesn't have

it. But when Tanner is in one of his SI fits, it's hard to break.

Fortunately because of therapy, Tanner rarely has SI fits anymore,

but he had one once in the car on the way to his therapist -

nothing to do with her. I watched her in amazement not only break

the fit, but get him to start actively participating in therapy. As

I said to you privately, therapy should be a fun time where they

don't even know they are learning to talk, they just are.

I was so upset by this email that I called Tanner's therapist and she

agreed that something doesn't sound right. She too never heard of

such a thing, and said this is not acceptable. 2 of the speech

therapists I work the closest with through CHERAB Foundation are

unfortunately not able to answer this right away, and I really felt

it important to address. Lori is on vacation, and Cheryl just had

surgery, but I know that they will have more than two cents to add to

this. I was waiting to see if any of the other SLPs on this list

would because I knew I felt strong about this, and wanted the

response to be professional-and not emotional, but I can't help being

so bothered by this. How severe is your child? You said she tries

to get him to say words he can't say yet. How many words does he

have? Before words, the therapist should be working on sounds

first. A skilled therapist does know how to push, and when, but to

observe a three year old time after time crying and knowing that he

doesn't want to be there and just letting that continue makes her

sound incompetent to be working with young children.

Hope that helps,

Best,

[Guest guest]

Hi .

Thank you so much for your email. This is tearing my heart apart for my

son when I have to see him cry every time we go for speech. I am going

to speech tomorrow with him and I am not leaving the room no more. My

son speech theparist kept telling me it's better that leave the room

and I always listen to her because I thought she knew best, but it tore

me apart hearing my son crying for me. But after reading your email I am

definetly not leaving the room, I am going to do what I feel best for

him.

We are in the Sarasota Florida area. Right now we are in the Early

Intervention Program. When he turns three in April he will be moved to

the school board system. In the school board system they only have group

theparpy. That is another question I have, Should chlildren with apraxia

need one on one thparpy? We have tried to get our insurance to pay, but

they have denied our claim. But if he needs one on one theparpy I will

pay whatever I have to.

My son has about 75 words. But of all those words they are not very

clear. I'm really the only one who can really understand him. He just

started putting two words together.

He has been with this theparpist for about one and a half months. At

first he liked to go but about the past 2 weeks he started crying every

time.

Any more suggestions I would really appreciate it.

Thanks Jeanne

[Guest guest]

Hi Jeanne,

I was so happy to read your email! When you " make your stand " you

have my permission to print out what I write to you privately, on

this list, or on our website at http://www.apraxia.cc and give this

to your son's therapist too. Dr. Agin is the Medical Director of

Early Intervention for NYC, the largest of it's kind in the country,

and I would like to know what she thinks of this situation as well.

Again, it may not be that your son's current therapist is bad, but I

believe it's important to follow those very strong parental warning

signs, the ones that are so obviously tearing you apart.

I'm really proud of you Jeanne for what you wrote in the last email

to this list, and know that you have every right to do what you

believe best for your child. The reason I am so upset about what

happened to you is because when my Tanner was 3, about your child's

age-about a year and a half ago when I formed the first nonprofit for

apraxia, I too had a horrible similar experience. Please use this

story for strength so you don't back down, like I did.

Tanner was only diagnosed March of 1999, and was severe/profound

apraxia with only a handful of words. That June he went to the

Summer Program our school offered and Tanner clung to me. I wanted

to stay for a bit, and I had a little book that " translated " certain

actions or sounds for him so that they could understand him like we

did. When they told me I had to leave, Tanner understood and he

started to cry. I tried to stay but they walked me to the door and

held Tanner back while he screamed and cried " MA! " " MA " (Just about

his only word) I was told I HAD to leave, over and over in a firm

tone. Actually, I was walked out of the room and had to leave my son

screaming in a classroom because like you I believed I had to listen

to them to do " what was best for Tanner. " I was assured this

is " normal' and that he would be fine.

When I came back 2 and a half hours later, Tanner was in the corner,

his face swollen from crying, and he was still crying. Do you think

any of them called me after a half hour or hour? No.

That night I PROMISED Tanner that I would stay with him the next day

for a bit, because I knew how scared he was to go back. That was the

only way I could get him to go. My husband was in Florida (of all

places, huh?!) on business when these two days happened. Glenn told

me " STAY WITH HIM! Who cares what they say! It's our child and you

do what's right for Tanner! " I agreed.

The second day, I brought Tanner in and explained calmly that I would

only stay for a short time, but that I promised Tanner that I would

stay for a bit with him. Again, having no knowledge of what was

right, like I do now, I listened to the teachers and therapists at

the school, who I believed to be the " experts. " They said " no, you

have to leave, you CAN NOT STAY " " This is what is best for Tanner,

trust me, " they said. Tanner was clinging to me for dear life

starting to cry. I said, " But just for a bit. " They again told me

absolutely " NO " that what I wanted to do would hurt Tanner, and that

I was not letting him learn what he needed. They pulled him away

from me-while he screamed and cried " Ma! " over and over. I kept

saying " Please let me stay for a bit, I PROMISED him. " I didn't want

to cry in front of Tanner but my heart was breaking.

I again was walked out of the room with his screams for me echoing

down the hall of the school. They assured me again that this was

what was best for Tanner. I drove home with tears running down my

face, and walked in my house and physically got sick. Again when I

drove and picked him up he was in the corner, his face swollen again

because he was still crying after two and a half hours. And then it

was the weekend. The next week Glenn took Tanner in and he refused

to leave the room until Tanner was comfortable. Within a few days of

that, Tanner was fine. I felt like I failed Tanner because I gave

into them, I trusted them, like you.

Maybe they typically would be right, but with apraxia, which is

neurologically based, sometimes things need to be different. It is

not " normal " for a child to be left crying in a corner for 2 days for

2 and a half hours. He has sensory intergration and his cries of

pain may have been real to him.

How I wish I could go back and change those first two days for my

Tanner. I can't. But I can let you as a parent know that doesn't

have to happen to you. As I always say, ignorance is not bliss, and

knowledge is powerful. I do hope that this story helps you Jeanne,

and perhaps others too.

To receive insurance coverage, please review Dr. Agin's post # 263

INSURANCE, DEALING WITH THE BIG BOYS. Please know that you can

search the archives for answers by just typing key words of your

question into the archives search. Also know that many answers to

your question are at our website http://www.apraxia.cc under

therapies, school links, etc.

If your son turns 3 in April, it is important to prepare now for his

Individual Education Program (IEP) Please know that your child is

entitled to an " appropriate " education. Do not use the word " best "

because legally they do not have to provide that. If your school can not

provide your child with " appropriate " therapy in school, then you can seek " out

of district placement " or have the school pay for your private therapy, etc.

Please know that many apraxic children require Occupational Therapy as well as

speech.

Please seek outside evaluations (Outside of the SLP you are currently seeing

through Early Intervention-and outside the school he will be

attending) You will be best prepared to go to your child's IEP

meeting with the following.

1. Speech Evaluation from a private SLP who is knowledgeable and

respected for working with children with severe language disorders.

(Even if you have to pay out of pocket-or travel to have that if

financially possible) You need this person to put in writing the

severity level of your child from mild to profound, her

recommendation for how many days a week of therapy needed, and what

type (one on one of course!) A child with apraxia also does not

respond to typical speech therapy and requires those skilled in oral

motor therapy, PROMPT or other methods. Actually, for the NJSHA

conference coming up, Dr. Joan Sheppard from Columbia, will speak

with other professionals in this area about teaching hearing apraxic

children in schools for the deaf. (Dr. Sheppard is our speaker March

5th and this meeting will be taped for our partner groups!) In other

words, children with apraxia do not learn to speak like other

children, and require different approaches, even learning to speak in

a similar way to deaf children at times, and intensive and daily

approaches.

2. Medical Evaluation from a neurodevelopmental professional

(developmental pediatrician and/or neurologist) that is respected and

knowledgeable for diagnosing and knowing appropriate treatment for

neurological conditions like apraxia, and the soft signs that

typically accompany it like hypotonia, sensory integration disorder,

and motor planning issues of other parts of the body. You need this

person's report in writing with the amount and types of therapies

required.

3. Print out of these pages of our website: " Ask the

Doctors " " Reasons for One on One Therapy " " Signs of Verbal/Oral

Apraxia " and Lori's excellent information under " Apraxia, what's

that? "

4. The Severity Intervention Matrix from the American Speech Hearing

Association for School Based Speech Language Pathologists (SLPs)

which I have links for on the apraxia page-and many others.

5. An advocate, or a tape recorder.

6. Possible evaluations from private OT and child psychologist too.

Let them know you are part of our group, and that we are helping you

with the IEP, perhaps someone on this list from Florida can help you

as an advocate-or even just for moral support? I hope so.

Best,

[Guest guest]

Hi ,

Just want to update you on my son . I went to his speech class

and I told the speeh therapist I was going to stay with him. I can tell

she was not happy. But my son did not want me to leave and I promised

him I wouldn't leave. He did not cry as long as I was there. So I

really think it's better I stay in the room.

I also wanted to ask, speech therapist uses the Kaufman method,

when she takes the card and ask my son to say the word she will not move

on to anything else until he trys to say the word. Is this the way your

supposed to use this method? I feel my son gets so fustrated that's

proably one reason he does not like to go to this theparpist. If anyone

can give me some feedback I was appreciate it.

I also wanted to say I am so glad I found this support group. Everytime

I tell someone that my son has apraxia no one knows what I am talking

about. My family thinks he is just a late talker and will talk when

he's ready. I guess it's because no one has ever heard of apraxia.

This website has been wonderful! Thanks!

Jeanne

[Guest guest]

Hi Jeanne,

I believe that the members of this group that either take their

children to Kaufman for therapy, or use her approaches as

professionals will be better able to answer your questions than I

would. I am going to speak to for other reasons, and when we

talk I will ask her about this. She is out on conference this week,

so you may not hear from me about this right away.

I did speak to one of the parents from our group that took her child

to see , and herself insisted on this mom staying in the

room with her child so that the child will be " as comfortable as

possible. " Her child is also younger than three, like .

It sounds like you are getting stronger, with our support as a group

you will continue to learn how to help more and more. I'm

very proud of you Jeanne!

Best,

[Guest guest]

Hi ,

Thanks for your email. I am definetly looking for another speech

therapist. I don't want to have to force him to go everytime. We had a

speech therapist before this one and he loved her he couldn't wait to

see her. But the EIP told us we had to go to someone on our insurance

so we had to switch, but we just found out our insurance will not pay

for his therapy. So I want to go back to the other therapist. I'm

hoping that will work out.

Thanks again for your support

Jeanne