Re: Re: Not sure what to do ... please help!

[Guest guest]

Hi - (- please read as well)

My Son was diagnosed with " SUSPECTED Moderate to Severe Apraxia " prior to his

3rd BD. The diagnosis was CONFIRMED 6 months later. My Son is now age 4 years

(and almost one month old)... he was born on 3/11/07.

The hardest thing for me PRIOR to the diagnosis of Apraxia was FINDING SOMEONE

TO DIAGNOSE IT! (I know- it sounds bizarre). We were extremely involved, as

parents with a desire to find the REASON for our Son's delays.. and spent much

of our Son's 2nd year of life in Doctor's Offices..... one referral seemed to

lead to another... it was VERY frustrating! I learned about the " Concept of " a

DEVELOPMENTAL PEDIATRICIAN through my own on-line research..... I had to wait

quite a while for an appointment- but it was SO worth it! That woman had an

" almost magical ability " to " put all previous test results together " --- to form

a " possible conclusion " . The conclusion was " suspected apraxia " ..... (I was told

that it is hard to diagnose prior to age 3). I then, made it my mission to find

someone who could OFFICIALLY Diagnose Apraxia. A simple Google Search in my

area showed one name.... (Dave Hammer)...

- it really helped me to find a LOCAL person who was well versed in Apraxia

and who was also respected by the " Special Ed " people as well. It made a HUGE

difference in the Services that my child has received in his Pre K classroom!

You need to find a BOTTOM LINE Diagnosis for your child... and " go with it " ...

Honestly- there is a HUGE amount of BS can go on from one MD visit to

another.... if something " seems wrong " about what you are being told-- it MAY BE

wrong. No one KNOWS JOHN like YOU DO!!!

I will tell you this- from your descriptions of - I do not SEE ANYTHING that

makes me think " Autism- or Autism Spectrum " . I co-wrote an article for a cat

oriented Magazine that had a focus on " Pets as helpers to kids with

Disabilities " .... I will try to copy it to the Group... so that you can see all

that we went through to get the " Final Diagnosis " .

My son is now age 4... and his Diagnosis reflects APRAXIA and nothing but

apraxia. He also has " sensory issues " .... We have recently started weekly

" Feeding Therapy " to help to get him over " Sensory Reactions " to non-preferred

foods. It took me 3 months of fighting the Insurance Company to get the " Feeding

Therapy " approved... the fact that " I had to fight " yet , again made me really

mad..... yet- that has been my life with Tyler-- I have LEARNED to FIGHT.... and

FIGHT I WILL continue!

PURSUE your FIGHT to obtain a FINAL Diagnosis.... (again- nothing that you

mentioned sounds like Autism to me)

[ ] Re: Not sure what to do ... please help!

Thank you for all the great advice and support. I went running to the bookstore

for The Late Talker and found it very informational. I am going to find a

developmental specialist. If anyone know of one in MN please let me know. We

have been to a ped neurologist but were told that " apraxia is very hard to

diagnose. " Must not be his area of expertise ... Also, we have a appt with the

psychologist this week as a part of his ASD testing, I am not sure that I

mentioned apraxia to her because I did not think it was here area, I will

certainly mention it on Tues.

And thank you for your words of encouragement. This is exactly what I am worried

about. He is starting kindergarten soon and the key is early intervention.

I noticed after I posted that I mispelled SLP, it was quite late

I will keep you updated, I was also sent information for a clinic in MI, she is

considered an expert in the field. We will travel to find the appropriate

expertise if needed!

>

> Hi !

>

> There are many reasons for a child to have a delay. But the " evaluations " of

speech delay or expressive delay....totally obvious but not a diagnosis. You

want to know 'why' he's not talking -you already knew he had a delay before you

brought him there. Is it due to motor planning, weakness, what? You note he has

sensory issues, they can also affect expressive language. Also while your child

is being screened for autism spectrum disorder, as to me from what you wrote it

sounds like you are dealing with professionals who don't have great knowledge in

apraxia, I'd be VERY careful. If diagnosed with autism and if that is not an

accurate diagnosis and say apraxia is, ABA therapy for apraxia is not

appropriate and has been found in numerous cases in this group to be

> detrimental if not needed by the child. For those children that have both

autism and apraxia you want to make sure the ABA therapy is not to address the

motor planning impairments of apraxia it's highly inappropriate and again can be

detrimental.

>

> We do have one member that I know of in Minnesota who I know from there are

few others around her. I'll introduce the two of you in a private email because

I'm not sure if she wants her email on the web.

>

> So apraxia is a possibility, but good news is that while it's difficult to

know for sure with a child under 3 if it's apraxia unless there is oral apraxia

as well, your child is almost 4 years old! My son was diagnosed with apraxia by

professionals that were able to diagnose him from the first time they met him.

I'm a huge believer in second opinions and I didn't tell each professional what

the other said I just presented my son and they evaluated him. I find an

" evaluation " of " receptive disorder " to be a waste of money, " receptive

disorder " to be an assault to your child as they are not able to come up with a

true diagnosis for the " expressive disorder " and " articulation disorder " to be a

joke as your child is essentially nonverbal at almost 4 years old! Are they

kidding?!! AND- if it ends up your child is apraxic- articulation therapy you

have to be very careful with as well too much of that can lead to stutterin g

when they do begin to speak. So again it's like you are dealing with people that

read about apraxia in a textbook and not dealing with it in real life. That's

not what I would want! Is it possible to travel to seek an evaluation from

someone from say Wisconsin or Michigan? Are either of those states close at all

to you as I don't know in any other direction around you where you should turn.

I just wrote the other day if you can afford to it's worth even driving for

hours and getting a hotel room or flying to secure an appropriate diagnosis for

appropriate therapy and placement and your story is a perfect example why. I

mean how much longer are they going to string this along before they start

really helping your son?

>

> Since you note sensory issues, if there is a speech delay together with " soft

signs " such as sensory integration dysfunction, hypotonia / low tone and/or

motor planning deficits in the body -that all points to the diagnosis of

apraxia. Please share what symptoms of autism your child has as I didn't read

any in this message. Sensory integration dysfunction is found co existing in

autism, but it's also found co existing in apraxia, in those with traumatic

brain injury, and standing alone. And if sensory integration dysfunction wasn't

common Jockey and other companies wouldn't have gone " tag-free " on the t-shirts.

There are therapies for sensory issues just as there are for all the other

symptoms you may be noting.

>

> But again the one " diagnosis " I would refuse to have on my child's record

unless they could prove it would be the receptive disorder. Disorder is

different than delay- I wouldn't even allow receptive delay without proof- they

already are making claims that your child has an impairment of his receptive

ability and he's not even 4 and properly diagnosed yet! Shame on them!!! Please

don't let them shove your child into that box just yet without seeking an

evaluation with professionals who have knowledge in multifaceted communication

impairments and outside of just autism. Some of them once they rule out hearing

impairment and autism figure -oh he'll be fine up to a certain age and then

sometime after 3 they start assuming receptive and learning disabilities due to

the expressive delay. For those under the age of 3 that are late talkers, 75% of

them are just that- children with developmental delays in speech which means

they will start talking fine soon but just a bit later and probably with or

without therapy. But if your child is apraxic and in that other 25% you want to

know. And you want to provide your child with the benefit of the doubt when it

comes to receptive and cognitive ability at this point.

>

> Your child may be dealing with issues beyond others of his age, and he is

going to need you to learn (in your free time in between laundry and all) how to

advocate for him -be his voice. Stand up for him and say " How do you know my son

has a receptive disorder when you can't even tell me why he's almost 4 years old

and not talking?! " " I want to know what testing you used to determine that "

>

> I have found that those professionals that either are knowledgeable about

working with apraxic children, and when that's not possible, those professionals

that are knowledgeable about working with the deaf or hearing impaired

population to be better at evaluating those children with apraxia, or apraxia

and autism. You want to again secure an appropriate diagnosis for appropriate

therapy and placement. Those that work with the hearing impaired population

don't have preconceived negative views on expressive impairments. Just because a

child can't talk doesn't mean they don't think -have feeling -can't listen and

understand others talking about them like they aren't in the room.

>

> It's wise to provide some sort of alternative communication- even simple sign

or simple picture exchange (think of a menu at a restaurant..if you were in

another country and couldn't say " pizza " you would know how to point to that

photo of pizza....but don't take my word for that because when I was in Paris I

only wanted a slice and got a whole pie- but you get the point) I HIGHLY

recommend the iPad if you can afford one as they have pegged your child with a

" receptive impairment " and the iPad can prove them wrong. Please read this

http://www.facebook.com/topic.php?topic=15792 & post=106478 & uid=115029735601#post1\

06478 which is on our group's public facebook page http://www.apraxia.org

>

> Have you read The Late Talker? http://www.cherabfoundation.org/latetalkerbook/

If not that is highly recommended.

>

> Try to find other parents, again I'll introduce you to one. I plan on putting

together a new support page as there are some awesome parents that want to start

supports groups and I want to get info up on how to get that started. It seems

that you need that in your area!

>

> Just remember -your child is still preschool and even if he was school age

there is so much hope for all children with communication impairments- we read

about " miracles " every single day. The most important things for speech delay is

appropriate evaluation to secure appropriate therapy and if needed for preschool

(in 6 months) placement with an IEP. After that you may want to look as well

into nutritional methods we find that help which would be the essential fatty

acids from fish oils

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments and essential amino acids and

nutrients from NV

http://pursuitofresearch.com/2010/11/22/is-nutriiveda-creating-a-paradigm-shift-\

in-treatment-of-speech-impairments/

>

> So in summary I would highly recommend the following.

>

> 1. If you have not yet read The Late Talker book -you can start reading it

online- go to Google Books and search. That will be a great resource. If you can

afford the ten dollars it will be worth getting a copy as there are sample

letters etc. in there that will help you advocate and the free online version

has parts cut out. I co authored that book with neurodevelopmental pediatrician

Dr. Marilyn Agin and international journalist Malcolm Nicholl who also co

authored the book The LCP Solution with Dr. Stordy (about fish oils)

>

> 2. I put reading the book first because if you do have insurance that book

will help -and I have more to help in this area if you need help in securing

therapy through insurance. I have some here also from our apraxia.org facebook

page http://www.facebook.com/topic.php?uid=115029735601 & topic=13830

>

> 3. A private evaluation with the following professionals that have knowledge

about VARIOUS multifaceted communication impairments....not just autism-

preferably those that are recommended by others

> A. Speech language pathologist

> B. NeuroMD (pediatric neurologist or developmental pediatrician)

> C. Occupational therapist if the neuro and/or SLP suspect sensory and tone

issues (you may not be aware of the signs as you are a newbie and they may be

subtle at this age)

>

> 4. Find local support either in person or online.

>

> 5. Look into essential nutrients from fish oils and NV- here's info to share

with your child's doctor (once you find one!) about NV

http://pursuitofresearch.org/find-a-professional/

>

> At your child's age he should have an IEP. It's good to have a " hero " (SLP,

neuroMD) on the outside of the system to help set and or approve the 3, 6 and

yearly goals in the IEP.

>

>

> I know this may all sound overwhelming -but you don't have to know everything

at once and it will be OK. Most in our group have children that are mainstreamed

by kindergarten and are good students. I have a few messages here again at our

apraxia.org group for new members.

>

> http://www.facebook.com/topic.php?uid=115029735601 & topic=13085

>

> or

>

> http://www.facebook.com/topic.php?uid=115029735601 & topic=7329

>

> The good news is that you are out searching for your child which tells me that

he's going to be just fine. We just have to get you on the right track for what

to do next now- and some of the above will be a start to that! There is SO much

hope for a verbal and mainstreamed future!

>

> Best!

>

>

> =====

>

[Guest guest]

-

You can send anyone that needs help, support or advice my way- ether through

Facebook-or by giving them my home phone #. I have been in and out of the house

a lot these days- but will always return calls if people leave a message!

[ ] Re: Not sure what to do ... please help!

Hi !

Both and another parent I put her in touch with in her state are not in

the same situation as you and I where we have knowledgeable help that is local.

The other parent homeschooled for awhile and is now having a nightmare in the

public school. Like you the other parent has a medical background and her son is

now 8 years old -so she's been searching for awhile -just not the same knowledge

level locally there unfortunately.

For I highly recommended she travel to find support that can help her

advocate for her child and she's not far from Wisconsin -a bit further from

Michigan but willing to travel anywhere for help.

If there are parents from Wisconsin please share names of SLPs MDs and or

support groups either here or email me at lisa@... so I can pass them on.

I've already shared with her support sources in Michigan but if you'd like to

share more that would be great.

I know one of your goals is to help raise awareness about apraxia -I'm so

sure that would love to speak in private with you as well! I've already

told and the other parent I would help them start a support group in

Minnesota.

Right now we have 2 parents in this state with the same problem due to such

extreme lack of awareness there- the good news is that they are now talking.

That's a start to awareness. So if you are from Minnesota and can share (or you

are a!) knowledgeable SLPs and MDs- PLEASE do share! And if you are from there

and need help -email me lisa@... and I will put you together with these

other parents.

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