Re: Re: Can V. Apraxia qualify for SSI

April 9, 2004

Hi ,

I received your phone message and wanted to respond earlier but my

husband's family is in for the holiday and have been busy being the

tour guide for Lancaster County. His family is from Indiana. The

funny thing about your call is that I was speaking to Mel's County Case

Manager when you called my cell phone. Our very discussion that

morning was concerning Mel and Mel receiving no services from any

where. She really has an issue concerning Mel and the fact that Mel

is receiving no services at this time. She recommended we visit OVR

and see what services they would be able to provide. As our discussion

continued it was very clear that OVR would recommend workshop

atmosphere first then maybe talk about a job coach. I reminded her of

Mel's diagnoses and asked her what she had learned from the apraxia

workshop she had attended just last month. I asked her to please tell

me how a workshop atmosphere was going to be the most beneficial to Mel

at this time then her private and home therapy program. I also

reminded her of Mel's severe case of PTSD and how a workshop atmosphere

will bring back all of those awful memories from Mel's school days and

would cause Mel to regress. I told her that the MR label is still

haunting Mel and Mel has been away from the school system now for a

little more than 2 years. She finally asked me if I was to receive any

type of services for Mel what would we like to see happen. I told her

I would like to see funds being provided for more private therapy for

Mel. If they really wanted to help Mel, then they would provide funds

to help cover the cost of private therapy. I am told there is

different funding once the child turns 21 and she said she would start

now to make sure we receive some type of assistance for her private

therapy program once she is 21. I thank her for her phone call and

concern but reminded her that Mel is a very unique situation and what

services they provide at this time would not be beneficial to Mel. I

also asked her to start to view Mel has a very severe global apraxia

individual and take into account what that truly means for Mel.

having the MR label placed on your child if they are not MR is not

worth the services they would provide. I would stand up to that team

of individuals and educate them on apraxia. It is most convenient to

place that label on a child when no other label fits within their

system as they have the classes in place so their budget is not

touched. with our IU and old school district it was all about

the money. Plus the idea of receiving more services is not correct.

We were actually told that as well when Mel was young and they placed

the MR label on her. I still remember seeing Mel in those TMR classes

and looking at her and looking at the other children and thinking this

is so not right. Back then no internet and no support groups left me

with no other options. But now it is a very different time in our

children lives and there are options. Parents with children who have

apraxia need to exercise those options so the children receive

appropriate therapies and education. Mel's many years of inappropriate

therapies and education still haunt us today. Mel has been in a very

appropriate private therapy program now for over 2 years and we still

are undoing what what was done plus trying to more forward. Mel is

having steady but very slow progress. I think about where Mel is now

but really where Mel could have been if she would have receive

appropriate therapy and think what was done to her was due to budget

restraints. It also saddens me to see that they are still using that

same line how having the MR label placed on your child will be the most

beneficial for your child. I was really hoping that the system would

have made some changes.

Having a child like Mel who has apraxia all over is very hard to test.

Mel was never even able to point correctly to the answer she wanted as

she did not have the motor planning to accomplish that task. So

without Mel being able to verbally tell them the answer or point to the

answer it was so easy and convenient for them to place the MR label on

her. What they really should have been looking at was her severe motor

planning issues. I still have a very hard time understanding why all

of those therapists that worked with Mel all of those years never ever

acknowledge her severe motor planning issues. I guess the answer

eventually will be given when we are in federal court.

Mel has really done well these last two years with appropriate therapy

but still has a long therapy road ahead. Mel's therapists are

wonderful and adapt their therapy methods to best help Mel. Mel is

much more verbal now and really trying hard to further her verbal

skills each day. Even though Mel is much more verbal she still has a

very long way to go. There are times that Mel just pops out with a

correct sentence within a situation and we just look with amazement. I

am grateful she has done that during speech therapy so her therapist

could see that she does this. We are actually seeing a very different

side of Mel now that she is able to express her wants and needs. Just

the other night we had friends over and we were getting ready to serve

cake and ice cream for dessert. When Tom asked Mel would she like cake

and ice cream Mel said " no cake bread please " . We actually had two

pieces of garlic bread left from dinner. I then said to Mel that she

would have to get a plate and place the bread on her plate and please

sit at the kitchen table to eat the garlic bread. Mel did just that.

We all just looked in amazement as Mel was able to tell us verbally

that she did not want cake and then she was able to motor plan what I

had asked her to do. Mel was never ever able to do anything like that

the whole entire time she was in that IU/school program. This is just

one example of what Mel is now doing each day.

Mel is now a very happy young lady and knows that she still has a very

long road ahead with her therapy. Mel faces each day with a great

attitude and looks forward to attending therapy sessions. When I tell

Mel we have about 5 minutes before we need to leave for therapy she

starts putting on her shoes, grabs her coat, and goes into the garage

and gets into the car and places her seat belt on and waits for me. I

get in the car and she always tells me " lets go mother " . All three of

my girls call me mother as they know I prefer mom but all three have

learned how to tease me. When we are at home Mel is always grabbing

her word cards and brings them to me so she can practice. The fact

that Mel wants to practice as much as she does is wonderful. Mel is

definitely one who can prove to everyone that appropriate therapy

really does make a difference regardless of your age and what you have

experienced prior to receiving appropriate therapy.

I truly hope that no parent would ever accept an MR diagnoses when

there child is not MR with the promise of receiving more services. The

parent really needs to evaluate what is best for their child. For Mel

the best is what we are doing today. Looking at Mel as having severe

global apraxia and doing what ever it takes to help Mel with her

apraxia. Today there are so many options and so many resources to

help fight the system so our children are not labeled just for the

convenience of our school district and IU programs. We need to

exercise these options and make a difference in our child's lives and

the children that will be born with apraxia. I only wish I would have

had the resources when Mel was young. Mel's life would be so different

today. We have learned not to dwell on the past but look to the future.

Please any parent who is facing this situation please do not allow them

to place the MR label on your child if they are indeed not MR. This is

the worst thing that can happen and the services will not address the

apraxia issues. Mel's due process hearing was almost a year ago and I

remember it like it was yesterday. Our old school district/IU trying

to get Mel out of her private therapy program that we are paying for

and back into their school system. They still refused to believe the

apraxia diagnoses and wanted to place her in a life skills class even

though I brought proof that the therapy was indeed working and that Mel

definitely has apraxia. We actually had to move to protect Mel from

any more harm.

Mel's whole experience has taught me that inappropriate labels and

therapy should not be accepted regardless of what is promised to the

parent and the child. No amount of services and therapies that are

promised that are incorrect is worth it. I would be more than happy

to speak with anyone regarding this issue as we are living proof what

damage it can cause to your child when this occurs. The child has the

damage done to them and the parents have the responsibility of trying

to undo all the damage and harm that was done to your child. In our

case, we are looking at least another 10 years or life time. It is not

worth your child losing their smile and happy personality like Mel did

for so many years.

I truly do not want to see another child suffer like Mel and would be

more than happy to help any parent that needs help with this by sharing

what we did to break Mel from the MR label. Having the correct

diagnoses truly truly makes a difference. Please do not allow anyone

to tell you any different.

Robin

717-397-4038

April 12, 2004

Robin I got nothing short of hysterical when reading that post.

THIS IS MY JORDAN.........TO A " T " .

The IU is worthless.....that's no surprise. He doesn't fit in a PDD-NOS class

(and was only moved out because of a letter from a developmental ped). Their

SLP, I believe, must have bought her degree from Sears when they had their last

sale. Privately, 3 SLP's so far keep saying " he has phonetic with motor

planning problems and sensory integration disorder. " Is this not what apraxia

is????? <sigh> His new therapy has brought him a very long way over the past

month, but I truly do NOT know what else to do. I feel like I'm getting sucked

into a vacuum. Even with all of the doctors in my family....everyone has advice

and opinions, nobody has answers.

I have M.A. after my name, not M.D., so my opinion seems not to count,

especially because I'm his mother and " emotionally involved. "

~Karyn

April 13, 2004

Hi ,

I just heard about another family having issues with our IU today while

at Mel's therapy center. It is so sad that even after 15 years it is

still the same thing happening to our children. I wish I knew how to

put an end to what is happening but I just don't. Hopefully Mel's

federal court case will help open some eyes to what is happening and

start to make some changes for the better. Unfortunately the only way

that I will be able to resolve any issues regarding the school district

and the IU13 will have to be in a federal court room. To me this makes

no sense as they could have taken the money they are spending on

attorneys and court fees and provided Mel with FAPE. Mel still has

some time left in the system but since they still do not acknowledge

Mel's global apraxia/PTSD we are unable to exercise her FAPE right.

What IU program are you working with?

Robin

On Monday, Apr 12, 2004, at 09:56 US/Eastern, Karyn wrote:

> Robin I got nothing short of hysterical when reading that post.

>

> THIS IS MY JORDAN.........TO A " T " .

>

> The IU is worthless.....that's no surprise. He doesn't fit in a

> PDD-NOS class (and was only moved out because of a letter from a

> developmental ped). Their SLP, I believe, must have bought her degree

> from Sears when they had their last sale. Privately, 3 SLP's so far

> keep saying " he has phonetic with motor planning problems and sensory

> integration disorder. " Is this not what apraxia is????? <sigh> His

> new therapy has brought him a very long way over the past month, but I

> truly do NOT know what else to do. I feel like I'm getting sucked

> into a vacuum. Even with all of the doctors in my family....everyone

> has advice and opinions, nobody has answers.

>

> I have M.A. after my name, not M.D., so my opinion seems not to count,

> especially because I'm his mother and " emotionally involved. "

>

> ~Karyn

April 14, 2004

We are IU 22, in Bucks County, PA. I think they either don't WANT to

acknowledge the apraxia dx, because it's neurological, not 'EDUCATIONAL',

therefore they dont' HAVE TO.

I'm even seeing private SLP's who say " phonetic and artic disorder, with motor

planning issues and SID " , yet are unwilling to say the word apraxia. Why is

this? This child is CLEARLY apraxic.... 4 words and he turns into " cousin it " .

I'm having a very hard time dealing with the demeaning attitude of people who

are supposedly helping to educate my child. I truly understand why many people

just throw in the towel and resort to private therapy, that they pay for out of

pocket . I'm thinking this is what the IU wants.....<sigh>

I've had a long few months, and am just emotionally exhausted from all of this.

Now I'm running him to speech and OT 5 days a week, 45 minute ride each way.

Within 5 weeks this child has made more progress than he did in the IU in 1 1/2

years. And, btw, 4 of the 5 therapies he receives are being paid for by

us....they are only absorbing ONE session.

~K

Re: [ ] Re: Can V. Apraxia qualify for SSI