apraxia, by any other name

Let's play catch-up

2011-08-14T17:59:00.003-05:00

It's been awhile since I have blogged so be patient while I get my blogger feet under me again.

A lot has happened. Sam still struggles with the apraxia and makes slow painful progress. She is still in speech therapy that is based on co-articulation. It is intensive and requires a lot of family participation. something we have never been real good at.

Last year we were informed that Samantha would not be returning to her private school. It came as quite a shock considering we had sold our home in the country to be closer to her school. They told us that she could not keep up with the work. They allowed her finish the year but it was hell on wheels - as far as behaviour goes.

It was pretty awful at home with behaviour too. Rages. Tantrums. It got to the point that if brother were pestering Sam and I went to discipline brother, Sam would attack me. There was property damage. Hitting, screaming, biting, spitting, cursing - full out nasty. there were threats.

It became apparent very quickly that the combination of meds we were giving her was completely ineffective. In the past, we had done much better with medications. Not so now.

So this summer we decided we'd take Sam off all her meds. We weren't even sure what kind of kid we have under all these meds. What behaviours were Sam and what could be attributed to the meds. And considering the quantity and type of meds - it is something that needed to be done in-patient.

Samantha is mildly mentally handicapped. (I am still getting used to this) And as such, no clinic in Dallas would take her. She needs self help care. They don't do that either. There was one clinic left in Dallas that was questionable. So we took Sam there. And of course as soon as they found out about her MR, they told us she would not be a good fit. But wait, there was a woman who was just there from a clinic in Austin that did take kids JUST LIKE SAM. The intake counselor gave us the Texas Neurorehab Clinic's brochure and it looked perfect for Sam. They cover everything she deals with. And they would do a meds wash.

After a nice polite battle with Insurance, we headed to Austin to leave our daughter in a psychiatric facility. I have to tell you, it felt more like abandonment when we turned our backs on her and walked away. Hardest thing I have ever done as a parent.

We are on Day 11 today. Insurance review in two days and they may kick us to the curb. Down two meds so far. Several more to go. We had Sam off campus today and yesterday. Both, good visits. I am extremely cautiously optimistic.

We have had a new diagnosis here that they tell us is HUGE and want to know how has it been missed all these years. Dyspraxia - on a huge level. This includes deficits in psycohosocial skills, sensory motor skills, sensory processing skills as well as sensory modulation deficits. Yeah, I know. I gave you links. Have fun trying to figure them out too. We have some new therapies and strategies to address these things. We'll have to find an occupational therapist when we get home.

I don't know what we'll have when we get home - what changes we'll actually see. I hope the heartache, expense and pain we have had to experience for this treatment will have been worth it. I hope insurance gives us a few more weeks here.

Not likely. But possible.

co-articulation

2010-09-24T07:49:00.002-05:00

The word for today is CO-ARTICULATION. I am pretty sure it is going to be the kryptonite for Sam's apraxia. Look it up. Let me know if you have questions - especially if you are in or near Dallas!

More info to follow...

Sweet Dreams

2010-03-03T09:29:00.006-06:00

We might be onto something. I am guardedly excited (ecstatic).

After we returned from the Mayo Clinic and found out about Sam's sleep problems, we went to her Ear, Nose & Throat doctor here in Dallas. This ENT is now with Children's Medical Center of Dallas so she sent us to them for a new sleep study. (great people!) Pretty much the same results as at Mayo. Next, a second sleep study at Children's - to fit Sam with a C-PAP (Continuous Positive Airway Pressure) machine.

We have had the C-PAP at home for a little more than a week now. It is a mighty steep learning curve to get used to this machine - especially for a non-typical child. BIG adjustment. Sam's been through no less than 10 different masks looking for the right one. But she is doing great. We've just had four nights in a row where she did not wake up or kick her legs.
Sleep. It sounds like such a little unimportant thing. You take it for granted and the role it plays for your body and mind. At least I did. Until now.

Sam has not slept well for years. Perhaps her whole life. I can remember not being able to lay her down when she was a baby. She slept better when she slept with me. I just wrote it off to her being the (spoiled) first child and me not wanting to put her down. And while there may be some truth to that - I now think there is more to it.

My Mother and Mother In Law have told me for years how bad Sam's sleep is. I knew it was bad but did not think it was relevant. My answer was to not sleep with her. I never made the connection between the sleeping hours and the waking ones.

Besides, we did a sleep study several years ago and although it was poorly done, I still thought it ruled out any real problems.

Now we know that Sam has moderate sleep apnea. This is after the removal of her tonsils and adenoids when she was five. She has sleep disturbances during REM. She has VIOLENT sleep habits - kicking, hitting, flailing, screaming and then some. She grinds her teeth. For a short time, she pulled her hair out. She has reflux at night. She gets up at night and binge eats. She gets up at night and plays with the dog or watches TV.

Before we went to Mayo we made a home video of Sam sleeping in her own bed. We edited it down to show only the violent episodes. It has been shocking to everyone who has seen it. The sleep specialist at Children's Medical Center suggested putting Sam on a sleep medication because after the first few days on the C-PAP, she was still kicking violently. He said he rarely recommends sleep medication for children but after seeing her (home) video and studying her sleep lab results he felt pharmaceuticals would be necessary.

I told the sleep Dr. I would like to wait a few months before starting the drugs. He agreed to wait. I just want to see what the C-PAP machine does all on it's own. Then low and behold, the last four nights - zero kicking. Maybe that will stick. Maybe it won't. Only time will tell.

You have to wonder; how long has my child not gotten a quality night of sleep? How much of a sleep debt has she accumulated??

And did you know that children who are sleep deprived do not exhibit fatigue like adults do. Kids with sleep deprivation are HYPER. H!Y!P!E!R Kids with sleep deprivation have learning problems.

I did some research to see if there is a known connection between apraxia and sleep apnea. I found a paper on one child with obstructive sleep apnea and childhood apraxia of speech. They removed his tonsils and his speech production started to make a marked improvement. I think this is an area open to more study. How many kids with CAS have sleep apnea?

If Sam has OBSTRUCTIVE sleep apnea and does not have tonsils or adenoids, then what is obstructing her airway? I think it is due to the (CAS) laxity of the muscles in and around the mouth and airway. This is simply one mother's theory and not at all scientific fact.

I have told the Dr and the sleep tech that comes to the house to work with Sam on her machine what my expectations are. I am hopeful that this C-PAP will allow Sam to sleep better. All night. Every night. And once her sleep debt is repaid and deprivation is a thing of the past, I am looking for two things:

1. Better academic performance - to include her speech
2. Improved behavior - which should lead to a decreased need for daily meds.

The Dr and the sleep tech have agreed that my expectations are not out of line. I hope they are right.

I don't think this is a cure all. I don't think Sam will wake up a typical kid in two months. But I am hoping this will get her closer to center.

It's like I told the Dr., "You are not just treating this child. You are treating my entire family."

We get Sam more level, my family will follow.

In just ten days we have already noticed small differences at school and home. She is easier to do home work with. Her appetite is increasing. Her teacher said that she seems happier at school. Happier.

I really want to dance up and down the street. But I remain guardedly optimistic. I have had high hopes before. I have have had expectations squashed.

This is literally one night at a time.

And so far, so good!

Mayo Results

2009-11-18T11:30:00.003-06:00

So genetics came back normal. None of the weird syndromes they threw out at us.

Pediatric neurology came back normal.

Sleep Study - another story entirely.

Abnormal. Apnea, blood oxygen levels dropping, REM disturbances.
So we are following up on this.
And did you know that memory development/allocation kicks in when you sleep. And lack of quality sleep affects your moods. Big fat DUH!!!

Not sure what is causing the sleep disturbances. Still working on that part. Will let you know when we do.

day 4-5 Sleep study

2009-10-09T10:05:00.002-05:00

Too tired to think straight. Did the sleep study at Mayo last night. Went well but Sam did not have the episodes there that she does at home. At least not to my recollection. Apparently I slept through a lot last night. And the sleep techs at Mayo are very polite and won't tell you if you snore unless you really press them.

We did get a diagnosis yesterday. I still am not ready to talk about it. But I can tell you it is not life threatening. It is something we can work and live with.

we are still waiting on results from neurology, pediatrics, sleep and genetics.

I will tell you this:

Arrogance is a vindictive bed partner.

Day 3: Closer Still

2009-10-07T19:24:00.005-05:00

Today was amazing. We met with the pediatric neurologist, who again, spent more time with us in one day than Sam's shrink in Dallas does in two months. Full interview and head to toe exam. Ms. Ped Neurologist told us afterward that nothing jumped out at her - that everything seemed relatively normal.

Then we were hurried over to the Sleep Disorders Center. The doctor we met there is ALSO a pediatric neurologist AND a sleep consultant at Mayo. He is a key player in all this. He gave us a preliminary diagnosis of three possibilities. It could be other things but he feels almost certain it is possibility #1.

Let me back up, before we came here, my Mom INSISTED we film Sam sleeping. Sam has extremely violent sleep habits. If you dare to sleep in the same bed with her, you will either 1. not get any sleep, 2. wake up black and blue or 3. Both...

It was a chore, but we got the DVDs made and brought them with us. Dr. Sleep watched less than 5 minutes today and says, "Do you see this?" and points to DVD image. "This is almost certainly Possibility #1 but we need to rule out Possibilities #2 and #3."

I am not trying to keep information from you. It's just that we don't have a definitive answer yet and I don't want to start any rumors. In addition, we would like to give the news to family first. No hard feelings...

So the big news I can tell you is that we WILL be doing a sleep study at The Mayo Clinic tomorrow night. HUGE Deal. They only do 4 pediatric sleep studies a night. The scheduler told me not to be late as there will be people waiting for an open slot. We will be an hour early!

We waited in genetics today for almost three hours hoping for a cancellation. No luck. Our first appointment tomorrow is at 2:30PM so we will go in at 8AM, get our name on the wait list and hope for a cancellation before our scheduled appointment. Genetic testing could go a long way in proving or disproving Dr. Sleep's three possible diagnosis. Cross your fingers for a cancel!

that's all I got tonight. g'night all.

Day Two: shoulda packed socks and gloves

2009-10-06T18:12:00.005-05:00

Dang, it can get cold here! Just ran over to Target to pick up some food for the rest of the week. (bought two Minnesota Vikings shirts too - #4, Mr. Favre) But I digress. Brrrr. Cold. Raining. Glad to be in the warm hotel room now.

Today was a sort of hurry up and wait day. We had to be to the clinic at 7AM for a blood draw. NOT Sam's favorite activity. This meant we had to be up at 5AM and out the door at 6AM. Painful! Sam was such a trooper with the needle! And the phlebotomist had a hard time getting the vein. Without trying for too long, she stuck her head out the door and loudly exclaimed "I need some hands in here!" Another phlebotomist came running. Together, without another stick they got it taken care of wrapped up in no time. No tears shed.

Then we headed down to Psychology and Psychiatry. Sam took a series of psychological tests this morning. We met with Dr. Psychologist. Wonderful Woman! And we could watch Sam in her tests on a closed circuit camera from her office. Awesome!

We, the parents, had to fill out no less than eight different psychological questionnaires on Sam. The parent's point of view. I promise you, by the end of the last form, I was seeing double.
Never, Sometimes, Often, Always?
I had to read instructions three or four times to make sure I got it right - and still there is serious room for argument.

When we wrapped up there, we headed to Clinical Neurophysiology for an EEG. Sam does not have an appointment for this until next week (and since Sam does not have a trust fund, we will not be here next week). But we were told to go and check in at the desk and if there are any openings, they will work her in. We sat for about two hours only to be told there were no spots today. That's okay. We will do what we have to do. We are free tomorrow afternoon so we will go wait again.

After the EEG wait, we headed to another building for a speech evaluation. The Speech Language Pathologist (SLP) was a lovely young woman. She interviewed David and me and then gave Sam a few speech related tests.
And then the bad news...

The test results in receptive language (what Sam understands) and expressive language (what Sam says) puts Sam below a six year old level. The words 'severe' and 'profound' are once again attached to my child. That hurts the same no matter how many times you hear it.

But we press on.

Tomorrow we start with Pediatric Neurology. And then off to the Center for Sleep Medicine. I don't know if this means they will do a sleep study tomorrow night or not. If we do, I am volunteering her Daddy to stay with her. I did the last one - it's his turn now. And we all know how this will turn out. He will be watching Pimp Your Ride in our very comfortable hotel room while I am tossing and turning on a fold out recliner trying not to snore.

As I mentioned earlier, we will spend tomorrow afternoon waiting and hoping for a spot for an EEG. Please pray specifically that we can do this before we go home this week. The doctors we have seen so far have implied this is a priority.

Sam is holding up really well. She was very anxious this morning before the blood draw and then again when she thought she would have the EEG. We tried to tell her the worst of it would be that they will mess up her hair. No dice, she did not buy it. Her relief was palpable when we were told there were no spots.

David and I are exhausted. I am quite certain I snored in the lobby today waiting for an appointment. We brought books and magazines to entertain ourselves. They only serve to put us to sleep.

And you know how you hear about Southern Hospitality and all that jazz? Well they are just as hospitable in Minnesota. Everyone - shuttle drivers, hotel people, taxi drivers - not just the folks at Mayo are fantastic. It's like part of the curriculum in the high schools around here. Were it not for the odd accents and COLD, I'd feel right at home.

Checking out for the night. Will be back tomorrow evening with another update. Sleep well, friends.

Day One. Ballroom Dancing

2009-10-05T19:36:00.005-05:00

Today has been exhausting and amazing. Without getting into politics, let me say this: there is a reason why it has been suggested to use The Mayo Clinic as the Gold Standard for American Health Care reform. THEY FREAKING KNOW WHAT THEY ARE DOING!

Today we first met with the Psychiatrist coordinating Sam's care this week. He spent at least an hour and a half with us. He listened, he questioned and he educated. I was so impressed. And that takes a lot for me after all the doctors and hospitals I have been to. He did not condescend or patronize. Another of my pet peeves. Score two for Dr. Psychiatrist.

After the first appointment, we had several hours before the next one. Walking through the lobby, we found them setting up for a ballroom dancing exhibition. No joke. And get this - several of the dancers are physicians here at Mayo. Unbelievable. At the end, they introduce this sweet little 98 year old woman. She had spent 50+ years as a nurse at St. Mary's hospital (affliliated with Mayo) and is an avid dancer. SHE DANCED! And in introducing her, the MC points out that this sweet little 98 year old retired nurse remembers standing in front of St Mary's hospital and watching FDR drive by in a parade with the Mayo brothers. FDR; as in President Franklin Delano Roosevelt!!!!!

After lunch we met with a developmental pediatrician. Again, relaxed Q&A and spent at least an hour with us. Even better, Dr. Pediatrician had SPOKEN with Dr. Psychiatrist and he had already reviewed her notes from our meeting this morning. Can you say Collaborative Medicine? When we came up here, we had psychiatry, psychology, neurology and pediatrics on the schedule. Dr. Pediatrician interviews us, engages and exams Sam, steps out for about 20 minutes and tells us he just spoke with Dr. Psychiatrist and they agree that Sam will ALSO see a speech specialist tomorrow. And they would like to do genetic testing, conduct a sleep study and have an EEG done. Hopefully we can get all this done this week. If you have any connections at Mayo - let me know!

I will likely be paying for this week for the rest of my natural life. And my insurance pays 90%. And if we get answers, it will be worth every penny!

The Mayo Clinic

2009-10-04T20:28:00.004-05:00

Samantha - Dressed and ready to go this morning.

As this blog chronicles Samantha’s life and many challenges, it is only right to include the details of our visit to the Mayo Clinic. We left this morning and are now in Rochester, Minnesota for four days of tests and evaluation.

Why the Mayo Clinic you ask.

Several reasons. First, during the second half of the 2008-2009 school year, Sam’s teachers told me that she was regressing. Not plateauing, but regressing. This is over the course of about four months. It is one thing for a child to plateau and is to be expected occasionally. But to regress is another story entirely. Samantha’s teachers strongly advised we see a medical professional to determine what is going on in her head.

Please note, Sam is in the very best school available to her in the US. It is amazing that it is here in Dallas, Texas. Divine Intervention is more like it. This school is her best chance at a productive future. But the school has a policy whereby they will not keep students who are not making progress. If Sam were to continue her regression, it is very likely they would not allow her to return next year. That alone would be devastating.

In order to prevent expulsion, I did some research on specialist. The first one I contacted in South Carolina was no longer seeing patients. So I sought the advice of our pediatrician. She told me I would be hard pressed to get a comprehensive evaluation of Samantha here in Dallas. She told me to take her to a facility specialized in the treatment of the whole child. She suggested places like Johns Hopkins and The Mayo Clinic. I started calling around and decided on the Mayo Clinic in Minnesota.

After applying, the Mayo Clinic accepted Sam as a patient. She will see a developmental pediatrician, a psychologist, a psychiatrist and a neurologist and anyone else they deem appropriate after we get there. They will evaluate and treat the WHOLE child – Sam. As it is so far, and through no fault of their own, we have been going to numerous doctors to treat this symptom and that problem. No one doctor, other than our pediatrician, has seen the whole child. So collaboration is a key component of this trip.

Some of our goals for this trip are: Do we have the correct diagnosis? Are we using the right medications at the proper dosages? What kind of treatments should we seek going forward? What might have caused Sam’s regression? And the million dollar question – which no one will likely answer – what is Sam’s prognosis? What can we expect in 10 years? 20 years?

It should be a good week. I’ll keep you in the loop as best I can.

THANK YOU to our friends and family that have sent love and good wishes. It is your support and encouragement that keep us going. Please continue to pray, light candles, chant, meditate – whatever it is you do to put good karma out there for Sam. As usual, we’ll take all the help we can get!

school days, school haze

2008-09-09T15:50:00.002-05:00

School is back in. It is Sam's fifth year at Shelton in the language intervention program. She is in a class with a teacher and an SLP I LOVE and at the same time are hugely effective instructors.

Sam's test scores at the end of last year showed measurable progress. Now that's something we haven't seen. ever.
But still, she is so far behind. She should be in 4th grade. She is in 3rd and tests at a 1st grade level in most areas.

The kicker is that we know she is intelligent. The spark is there.
It just does not translate to paper.

So I get the blahs...
the poor pitiful me's...
the poor pitiful sam's...

At the moment, I am trying to fill out paper work for an endocrinologist. Have to give a complete history before the doctor will even allow you to make an appointment. Her shrink suggested we have genetic testing done - to rule out anything there.

So my ped is sending us to this new Dr. If we pass the paperwork test. Which so far, I am failing miserably.

behaviour is an issue for Sam again. it is spiraling down hill. the tantrums are back.

Okay, (sigghhhhh)
picking myself up by the bootstraps (once again) and moving forward.

Paperwork will be done and sent.

no stone left unturned...

Forward
March

second opinion

2008-02-20T17:29:00.002-06:00

lesson learned today - Always Get A Second Opinion.

went to see an eye Dr today. not an optomotrist but an opthalmologist.
Did another peripheral vision test on Sam. With a technician with years and years of experience. different, more accurate technology. She spent a lot of time working with Sam to get accurate results.

I did not tell her why I was there ahead of time. Just that some test results were disturbing and I wanted a second opinion.

Sam's vision is 20/20 and her peripheral is PERFECT.

Did you hear that?
It was a HUGE Audible Sigh of Relief.

and now I think - what was the purpose in all this????
gut-wrenching anger and sadness

Hmmmm.
Well I did end up doing some research on Vision Therapy and how it can help kids with brain injuries and ADHD and Dyslexia.
There is an clinic in Plano that specializes in this type of therapy.

So I think maybe the purpose was to bring this new therapy to my attention. I am a no-stone-left-unturned kinda mom - so perhaps it was to bring me to this stone.

who knows.

just glad to let go of that renewed feeling of loss...

Sucker punch to the gut

2008-02-09T13:34:00.000-06:00

Typically, when it comes to bad news about Samantha I have some sort of warning. I know it is coming.
Going for testing or meeting with educators for test results.
And I have time to prepare mentally for these results - which usually are not good.

Today, the kids and I had routine appointments with the optometrist. Sam had only been once, when she was much younger and Savvy and Smith had never been - so this was a kind of check-up thing.

In the midst of rotating the kids through all the screenings they do - I was taking my turn in the Dr's Better or Worse chair. You know - where he flips the switches in front of your eyes and says "Better or Worse."

So I was telling him that Savvy had recently been evaluated at Scottish Rite and while she does not have Dyslexia - she does have a recognized reading problem. Then went on to tell him that Sam goes to Shelton, has ADHD, dyslexia, apraxia, etc. And if he had a hard time understanding her to just ask her to repeat herself.

A few minutes later he pulled me aside and asks me if Sam has brain damage. Did I tell him she had a brain injury? I said No, I did not tell him that but yes, she did have a head injury as a baby. He shows me this sheet of paper with graphs on it - one graph for each eye. Has to do with peripheral vision. The same square on both graphs was marked. She has missing peripheral vision on both eyes in the same place. And that indicates a brain injury. He continued to say that with the right equipment, you could determine exactly where the injury is.

Now how much an eye Dr knows about brain injuries is up for debate.
So I don't know about the mapping part.

But this is the first physiological proof that Sam has a brain injury. Up until now, we had assumed it. but did not know for certain.

and now we know.
for certain.

and it felt like a sucker punch to the gut...

another birthday

2008-02-05T15:50:00.000-06:00

Sam turned nine this past Saturday.
And I tried not to dwell on the where-she-is as opposed to the where-she-should-be.
but i had my moment.
Saturday morning. sitting on the side of the tub. watching her walk into the bathroom for me to do her hair. It hit me.
She's nine now.
Nine.
I won't even speculate where her maturity level actually is?
Or her ability level.
but neither are anywhere near nine years old.

It was just that one fleeting moment...

And then we had a fantastic time for her birthday.
Medieval Times with her sister and three female classmates.
None of them have the exact same issues or challenges as Sam but there are challenges for them nonetheless. Sam is the only apraxic one. But these girls were so cute and precious and darling together - being with them was one of the most uplifting experiences I have had in a very long time.
With them, Sam was typical. normal. They ALL were.
and it was GLORIOUS.
Must do this again - get these girls together. soon. often.

It's good for her.
It's good for me.

It's just good...

and the beat goes on

2008-01-03T13:35:00.000-06:00

the latest challenge in our on-going saga is that the meds Sam takes for ADHD seriously suppress her appetite during the days. So she eats like a bird.

Then in the middle of the night when all the ADHD meds have finally metabolized out of her body - she wakes starving.

So she gets up and helps herself to whatever she'd like. I don't keep a lot of candy, cake and cookies in the house. But if there are any - that, of course, is what she eats.

Instead of telling her she cannot eat, we tried putting a package of peanut butter crackers on the kitchen counter for her every night before we go to bed. So when she does wake up, she does not have to forage for something.

And she eats the crackers, most times in bed or on the couch. It's like she is eating in her sleep. I have told her and told her that it is okay if she eats at night - as longs as she does it in the kitchen.

and after the crackers - she then usually goes for something more...

I know that eating at night is not a good habit to develop. but she is very lean. This does not strike me as a binge type thing - but as a very real physical need for food.

And yes, we insist that she try to eat more during the day time.
And sometimes that helps.

Still trying to figure this one out.
I don't really want to have to put a lock on the pantry...

reckon I will talk with her shrink about this next week.

It's always something...

2007-12-20T09:16:00.000-06:00

In addition to the various issues already listed here in this blog, we got something new going on with Sam that is making me BATTY!

She is fidgeting with her hands. All the time. Fidget, Fidget, Fidget.

And why does this make me batty?

Because she fidgets with her clothes. She plays with the hem of her school jumper and works the hem out. she fondles the buttons on her winter coat and they come off. she unbuttons and buttons the bottom button on her school shirt until she either takes the button off or wears a hole in the shirt or BOTH.

I have mended, and re-hemmed and re-buttoned myself silly this past month.

This past Saturday was the straw that broke the Moma's back. We went to the au pair family Christmas party. Sam wore this beautiful NEW LL Bean Christmas sweater. (granted, it was purchased at the thrift store - but looked like it had NEVER been worn and it was the first time she had ever worn it.) Sam fidgeted with the hem in the front of the sweater until she pulled the hem out and frayed the front middle of the sweater. ARGH! And I don't knit - can't fix this one.

I am a fixer. and I can't fix this one. and I loved that stinking sweater.
It's just a stinking sweater. why do I let this eat me up like this?

Last year, Sam went through a phase where she pulled her hair out. in chunks - at night - in bed. She literally had a bald spot on top of her head.
We adjusted her meds and she eventually stopped and the hair grew back.

What is going on in this child's head to lead her to such behaviours?
Is she nervous about something. Has someone hurt her?
WHAT IS IT??

And what am I supposed to do about it?

until I figure this out - will keep the sewing kit handy.
Know anyone that knits?

MUST HAVE book...

2007-12-04T16:47:00.000-06:00

I found a newly published book specifically for the parents of children with speech and language problems - by the parent of TWO apraxic children.

The Parent's Guide to Speech And Language Problems by Debbie Feit with Heidi M. Feldman, M.D., PH.D.

I wish it has been published when Sam was initially diagnosed. It's got some really GREAT material in it - though most of it I know or have already experienced. I have a TBF degree - Trial By Fire.

I disagree with Ms. Feit only on one point. And I concede that my view may be unrealistic. I have said to write off public education as an option for your apraxic child. Ms. Felt gives direction on how to wade through the public education mire. I tried that route and realized (not soon enough) that public education would not work for Sam.

As I mentioned, Ms. Feit has TWO apraxic children which makes her uniquely qualified to author this book and guide other parents. I admire and respect her tenacity and spirit.

If you are the parent of a child with a suspected language delay/disorder or have a child with a recent diagnosis - RUN, do not walk and buy this book. I found it here.

Again, I wish I had had a roadmap like this when Sam was first diagnosed.

Dear Parent of Apraxic Child

2007-11-15T13:28:00.000-06:00

Since I began this blog I have had the privilege of receiving emails from parents with kids similar to my Sam. It is always so rewarding, fulfilling even, to find other parents with the same challenges and fears as mine.

my challenge, when contacted by other parents is to NOT be the fast-forward, tell-it-like-it-is, balls-to-the-walls, bossy-mother-type i tend to be. not every parent is where i am. not everyone has come to a place of acceptance with their child's diagnosis.

i have the very best of intentions when i respond to these parents, but i have always been a shoot-from-the-hip kinda gal. and not everyone wears Kevlar vests...

so i thought i would write one generic letter - to any and all parents with an apraxic child that might find their way to my blog - and if they can handle what i have to say here - out in the open - then i would love to hear from them via email (on my profile.)

so hear goes....

Dear Mom or Dad,

It really sucks to be you. There, we said it. If you think parenting a typical child is hard, you might want to sit down for the rest of this...

First, make sure your child's diagnosis of apraxia is accurate. The definitive diagnositic test for apraxia of speech is the Kaufman Praxis. Have it administered by an SLP that has done so at least ten times. (I had to INSIST Sam's public school purchase this test and administer it. The SLP was new and had never given the test. Sam has been retested several times since and I am confident of her diagnosis.)

Second, if your child has apraxia of speech, forget public school as you currently percieve it. I had the same thought you do - "If I can just get her ready for first grade."
Let that thought go right now. go ahead. exhale. I'll wait.

Sam attended a public preschool program for children with disabilities from 3 years old to 4 and a half years old. The teacher was exceptional. The speech therapist - young and new - but quite capable. In spite of competent, diligent teachers and an enthusiastic SLP, i consider this a year and a half lost for Sam.

You have NO TIME TO LOSE. if you get nothing else from this letter - realize that every day you spend with your child NOT in a program/therapy or the right program/therapy is a day gone forever. That is one more day he or she is behind his or her peers.

The hard truth - Public schools programs are not equipped to adequately help your child. Your child REQUIRES a communication emmersed education. Every single thing they do every single day must be centered around communication. This means being with a Speech Language Pathologist every day, all day. Yes, it's that serious.

Private speech therapy two and three times a week is nice. and you should do that, but it is the tip of a mammoth iceberg. And not just any speech therapist will do. Find one experienced with apraxic children.

How do you know if they have this experience? ASK THEM! and then ask them "How many apraxic kids they have worked with?" How successful were they with these kids? If the SLP tells you the kids were speaking clearly in a few weeks, months or even years - turn on your heels and leave them in the dust.

Third, be prepared to spend your life savings to help your child. No, I am not fond of this point, but you might as well know up front that it is NOT going to be cheap to help your kid.

To pay for what our daughter needs, my hubby and I drive older vehicles. All were bought used (except for the jeep which we bought before Sam was born.) I shop at Thrift stores for our clothes. I never grocery shop without coupons and use a coupon mom website to make sure i am getting the best value for my money. we do not go on vacations. my hubby keeps the thermostat at unreasonable temperatures through out the year to cut on our cooling and heating bills. (this makes me crazy) We forgo all the latest techno toys and gadgets. Our one TV is 13 years old. And we will not have a new one until this one DIES. We don't have cable or dish - only the local networks at our house.

THIS IS WHAT IT TAKES. Unless you are independently wealthy - prepare to sacrafice.

Fourth, when you make all these sacrafices and get your kid in a great program - your well meaning friends and family will tell you what good parents you are. how you are doing the right thing for your kid. don't believe them for a second. You cannot afford to become complacent and rest on your laurels. You should be questioning every single day if you are doing everything you can to help your child.

It's like worrying. Worry in and of itself gets you nowhere. It is completely unproductive. But if you worry and fret and gnash your teeth - you feel like you ARE doing something. it feels productive. but it's not.

Education and therapy for our children is VERY similar to this. We can do and go and do for them but if it is not with the right people at the right place at the right time - it is unproductive. but we feel like we are doing something.

Fifth, mourn. and don't be ashamed of this emotion when it washes over you. During your pregnancy, you hoped and prayed for a healthy child. Most mothers flat out expect a healthy typical child. I had pictured Sam in my day dreams since I was in my late teens. I knew her before she was ever formed and born. and in none of my dreams was she ever anything less than perfect.

So when you find you don't have a healthy, happy, typical child, there is a sense of loss. validate that loss. throw yourself one good, big pity-party, if need be. but don't wallow in it it, pick yourself up and and move forward.

People say to me all the time - "I don't know how you do it."
My constant refrain - "I don't do it well."
But the truth is - YOU DO IT. You will do whatever it takes to help your child live a normal, fulfilling, productive life.

Sixth, please don't tell me you don't live near an appropriate program. You are talking to a Mom that moved two states away from her husband with two young children WHILST pregnant with the third, moved in with her parents so her four year old apraxic daughter could attend a four day a week specialized program where the (walk-on-water phenominal) teacher was also an SLP.

And when I found out a new pilot program was starting in Dallas and that the class for my daughter's age group was already full - I BEGGED for them to make a spot for her. I begged.
and they did.

I am currently selling my family's 'dream country home' to move into a smaller "city home" in order to be closer to Sam's school.

Simply put - you do what you have to do.

Seventh, be prepared for more than apraxia of speech. There are often co-morbidities (the medical term for 'other bad stuff') with apraxic conditions. For example, Sam deals with ADHD, Dyslexia and BiPolar disorder in addition to her apraxia. Maybe your child will be fortunate and this will be the only diagnosis you have to deal with. But don't count on it.

Eight, prepare for battle. Uphill, in a hailstorm, unarmed and out-manned.
it won't get easier for a long time. you are in this for the long haul. but you must be prepared to lead the charge for your child and your family. not only must you be the very best advocate you possibly can for her(him) - you are required to back up what you say and what you plan with WHAT YOU DO.

Finally, You are not alone.
This does not have to be a solitary journey. Lean on friends and family. Reach out to other parents (like me) that have kids in similar situations. Keep your house in order - which thankfully is not the same thing as cleaning your house.
I mean nurture yourself. Pray, if you are a Believer. Or meditate. Find a way to feed your soul. Take care of your marriage. Eat right. Get enough sleep. Read for fun. Focus on the positive. Your role as a parent has never been more important than it is right now for your apraxic child. You have got to be on your game.

Apraxia is not 'cured' in a year or two or ten. Accept that. And get moving.

Time is your enemy. It robs our kids of progress. Every day they are further behind their peers. Every day is a struggle to catch up.

Our children do not get a single minute back. Speech will NOT just happen for these kids. They won't "talk when they are ready."
Your child has a neurological disorder.
Not a speech impediment.

Accept it.
Accept them.
And then get a move on.
There is work to be done.

With love and respect,
t_cole

still in question

2007-10-24T14:43:00.000-05:00

i just got home from a parent - principal meeting for Savvy.
and i feel some better.
but not so good as to rule out there is not a learning difference for her.

we have some specific interventions planned for her and will meet again in six weeks to evaluate her progress.
that's good.

the dyslexia coordinator thanked me for being such a proactive, concerned parent.
i told them it really irked me when parents won't advocate for their kids.
and then the principal (who is not one of my most favorite people) tells me that a lot of parents advocate for their kids.
they just aren't willing to put their shoulder to the grindstone and follow through.

i'm a shoulder to the grindstone type mom.
not bragging.
just the way i am.
how i was raised.
i put an extremely high premium on education and learning.
i value exceptional teachers above almost all else.

everyone in my immediate family has a college degree. my mom has several. We all love to read and learn. We do not have stagnant minds.

thank God I have my mom and the rest of my support network. Mom sends me articles, gives me advice, encourages me, pushes me (usually in the right direction), and she has always valued education.

she told me many years ago that "education is the equalizer."
not position. not wealth. not pedigree.

education. regardless of the rest, if you have a solid education and a love of learning, you can overcome a crappy upbringing, abject poverty, low social position and just about any prejudice.

and i think she's right.

i guess that's why i fight so dang hard for my kids.
i fail miserably in several aspects of being a mother. no, really, i do.

but i figure i can make up for a lot by assuring that my kids get the absolute very best education they can - while at the same time, loving it. i wish to instill in them a passion for learning as well as an appreciation of creativity.

i have to light the fire and stoke it for years to come. that is my job.

and my job here will be done only when i am not the one pushing them through their education. i will be done when they step out on their own with a deep abiding hunger to learn, experience, and do more.

i hope i'm wrong

2007-09-17T13:40:00.000-05:00

i have a new mantra.

i hope i'm wrong

running through my head.
along the same lines of the little engine that could (I think I can.I think I can.)

i hope i'm wrong

my second child, Savvy, concerns me.
her reading skills are not where i think they should be.

i hope i'm wrong

and i notice her compensating.
by this i mean - she 'reads' books by memorizing the words the first time she struggles through it and from then on, uses the pictures as cues to the text.

i hope i'm wrong

which does indicate she is intelligent - but it does not mean she can read.

i hope i'm wrong

so i have requested a literacy evaluation from her public school.
i requested a dyslexia evaluation last year that was never done. (don't get me started)
requested one again this year, in writing.
had my pediatrician give me a referral to Scottish Rite for their dyslexia eval.
Looking into a few other options for testing as well.

i hope i'm wrong

i hope i'm wrong

i hope i'm wrong

sometimes, i am sad...

2007-09-12T22:03:00.000-05:00

last night we went to a PTO meeting at savvy's school. she is in first grade and each grade was singing a few songs prior to the meeting. a sure fire way to get the parents to the PTO meetings.

so there was Kindergarten - and they were adorable...

and then first grade - and savvy was the star (who are we kidding? i am her mom. i am biased. end of discussion.)

followed by second grade. still cute kids - doing their thing.

and then hubby leans over and asks - is this Sam's age group?

and i stop to think for a sec. and say no. she would be in third grade if she were mainstreamed (normal).

shelton qualifies her as second grade - which is a GOOD thing - because it gives her at least one extra year there.

but if she were mainstreamed (normal), she would be in the third grade.

and they were up next. the third graders.

and i tried to picture Sam up there. with those pretty little girls and cute little boys. i tried to wrap my mind around the fact that those children are her contemporaries - age wise.

but she is not their peer. not in maturity, speech or ability.

and while i most often try to focus on what she CAN do and what she HAS learned and how much progress she HAS made, every now and then i am reminded of where she SHOULD be.

and sometimes, it makes me sad...

the birds & the bees & the flowers & the trees...

2007-09-06T09:07:00.000-05:00

i am preparing myself for The Talk
with my girls.

bought The Book
for The Talk
with my girls.

it's time. they are both curiouser and curiouser.

i just remember when my mom had The Talk with me and we read The Books - it changed EVERYTHING.
i didn't look at two people the same ever again.
ever.
i hate to change their world like that.

but it's time.

my other concern - when my mom had The Talk with me - i promptly went to school and had The Talk with all my classmates. ask anyone i was in third grade with "who told you where babies come from" and they will tell you - without skipping a beat - t_cole. they still tease me about this. i like to remind them that some of them had me tell them twice...

anywho - i have no doubt - no doubt at all that my girls will go to school and do the exact same thing. so i have given both of their teachers a 'heads up.'

i just hope i handle this as well as my mom did. she was awesome. she opened a dialog on sex and never closed it or shied away from it. ever. i could ask her anything. and did. and she answered it. and i think because of the way she handled it - i have a healthier attitude than most about sexuality and my body.

i simply want to do a good job on this. it's a big deal. this is knowledge that will impact the rest of their lives. not just the context of the message delivered, but how the information is shared by me and even the attitude inferred about the imparted information.

so much pressure.
wish me luck!

testing... .1.2.3. testing...

2007-09-04T10:50:00.000-05:00

received an envelope in the mail late last week from Sam's school.
figured it was some start of school info.

it was her test results from last year. due to the nature of the program she is in and how this program is part of a study - they do extensive testing of all the students each year. So at this point, at the end of her third year, we have four testing periods to compare. Admission tests, (Sept 04), end of first year (Jul 05), end of second year (Apr 06) and end of third year (Apr 07).

and one would hope that each of the test results/scores would increase (where appropriate).

but with the nature of Sam's challenges, that is not the case.

and every time i see my daughter quantified on paper, it breaks my heart.
i HATE it.

her last test period - Apr 07 - her scores went down - across the board. some of these most recent scores are even lower than her admission test scores.

how can that be?
is she getting worse?
absolutely not.
dammit.

last year she learned how to read and write.
it was one of her very best years at Shelton.
so why the decline in scores?

i have my theories and believe it is a combination of things.
one, with kids like Sam, the scores are really hard to increase b/c they get older each year. when the testing is scored - they have to take into consideration the increasing age of the child. so as she ages, her measurable ability has to exceed her aging. that simply is not going to be the case with Sam.

second, her teacher and slp told me that at the end of last year, sam really dropped off - on effort put forth as well as her ability to attend to her tasks. that she just lost her momentum.

finally - the end of her school year was a horrible time for me personally. emotionally, spiritually, physically, mentally. you name it - the first part of this year sucked raw eggs in my life. i fear my angst spilled over into her life.

and it had been an intense year. Sam was learning to read, vastly improving her writing skills, speech drills and we spent several months adjusting her medications to increase her focus during school hours.

i think by the time April and testing came around, she was simply just wore out. and unfortunately her fatigue is reflected in her test scores.

i live with this child. she did not regress last year - not by any stretch of the imagination. she made huge gains. people have told me recently - her doctors, sunday school teachers, friends - that they can understand her so much better lately.

but it just pains me to see it on paper. the declining scores.
i hate the numbers attached to my flesh and blood child.
i hate the words attached to my flesh and blood child.

ADHD
DYSLEXIA
APRAXIA
BIPOLAR DISORDER

i hate them all.
and i want them to leave her the hell alone.

i am reminded of a scene from one of my most favorite movies, Aliens.

at the end of the movie, sigourney weaver's character is defending the young girl from the Queen Alien. She puts on her armour, turns - all hot, pissed, sweaty & maternal - and screams, "GET AWAY FROM HER YOU BITCH!"

THAT'S exactly how i feel toward this faceless, inanimate enemy.

back to school

2007-08-26T13:27:00.000-05:00

tomorrow is my most favorite day of the year.
better than Christmas and my birthday. combined.

all the kids go back to school.

and our house is a cauldron of swirling emotions today.
the kids are excited, dreadful and anxious.
and i share the sentiment.

i am THRILLED they are going back to school.
though i dread having to get up earlier...
do battle to get them out of bed, dressed, fed, brushed and lunches packed.

and this week - of all weeks - a double whammy to scheduling...
hubby has been told - due to a upcoming special event - to expect to put in lots of extra hours.
and my mother in law is having a rather serious medical procedure tomorrow and i have a demo first thing in the morning.

so that puts me squarely on the front line this week. unarmed.

might as well just jump in with both feet and hope to goodness i float...

took sam by to meet her new teacher and slp on friday. she asked me no less than 50 times why she has a new teacher. why does she have a new class? who are her friends in this class?

and thank GAWD there are friends in this class - and it just so happens that these friends belong to two of my favorite mothers.
(little blessings)

i feel for her - the anxiety of starting the year with a new teacher. she had such a GREAT year last year with her previous teacher and slp. and the good news is that she will likely have them again for the next two years.

but for now, she is anxious and excited.
sister and brother are the same.
brand new backs packs are lined up by the dining room table stuffed with all new school supplies.
shiny clean lunch boxes laid out on the kitchen counter.
clean clothes laid out in each child's room for tomorrow.
everyone has new shoes for the first day - new outfits too.

i am already tired just thinking about the upcoming week.

wish us luck!

and therapy for all

2007-08-24T08:53:00.000-05:00

had an appointment with my psychiatrist yesterday.
first time in close to 6 months i have gone in to see him.
and this time only b/c i needed a refill on my Wellbutrin.

so he asks why so long between visits?

and i tell him that i have not had three kids in the house since the end of March.
wow!
April, May, June, July and now August.
one of my three has been out of the house.
and in that time, my need for medication has diminished greatly.

that does not make me feel very good as a mom.

and i tell him this.

i explain that this does not meet my definition of an effective mom.
and i feel like i cannot handle my three kids at the same time.

he asks if this is true - that i can't handle them all at the same time.

and i think about it.

and i respond - no, i can handle them.
just not well.

and he asks me if that's probably not normal, given the dynamics of our family - that most people would find this a challenge.

and i think about it. and i tell him that i'd like to think that most people would find this a challenge.

i want to believe this.

i just keep thinking that i should be doing this so much better than i actually am.

i remember something my realtor told me. and i related her comments to my shrink.

my realtor and i were going through all the tasks required for us to sell a house, move, financing, buy a house, new school for the kids, et al.

she tells me, "t_cole, i hope one day Sam appreciates everything you have done for her."
without thinking, i replied, "i hope she never knows."

i went on to explain to her (and my shrink) that i don't want sam to ever carry that burden - that we changed our whole family life to accommodate her education, doctors and therapy. i don't want her siblings to know either. they may figure it out on their own - but they won't ever hear it from me directly.

i continued by saying this is what parents do when their kids have a need such as Sam's.
you simply do whatever it takes to provide appropriate care/education/therapy for your child. period.

my shrink tells me he wishes more parents thought like this - that he wouldn't have so many kids as patients.

that's nice to hear.

but i tell him - "make no mistake, my kids will very likely end up in therapy before it's all said and done."

we agree the predicted therapy will be due to the dynamics of our family and not due to lack of parenting...

but still, i question, constantly, my parenting abilities. and i will continue to wonder if it is my parenting or just the nature of our family that will send all three of my kids screaming into a therapist's office one day.

what birth order?

2007-08-08T12:33:00.000-05:00

one of the things i have been grappling with lately is that the birth order of my three kids is really messed up. Sam is the oldest at 8, then Savvy is 6 and Smith is 3.

Sam is noticeably immature for her age. this has been attributed to the ADHD and perhaps even the head injury. but more likely, the ADHD as this is not an uncommon trait of ADHD kids.

and Savvy is perhaps a bit more mature than children her own age. and she holds the uncoveted position of middle child in our family. and with that, comes its own ball of wax.

Smith is simply a three year old boy. also the baby. and that's not a bad place to be.

i feel deeply for the girls and the confusion they have in their birth order. Savvy certainly has the middle child syndrome working. poor pitiful me - everyone gets more attention than i do so i must act out. and in many ways, she is absolutely correct.

but even though Savvy is younger than Sam, she is far and away more mature. so i try and talk to her. and explain in the simplest terms possible that although she is not the oldest, she should try and act like the oldest. i cannot find the words to properly explain this to a six year old. even a mature six year old. and i desperately need her to understand.

and a part of me needs for Savvy to forgive me as well. i don't like having to ask a six year old to step up and in a sense, grow up. it's not fair.

NONE of this is fair. but our family dynamic is what it is.

and we all have to make the best of it - even if you are a innocent six year old girl...

The June Shelton School

2007-08-06T20:08:00.001-05:00

the june shelton school sits on the corner of arapahoe and hillcrest in the building that once housed the prestonwood baptist church. every single time i drive up to that building i am overwhelmed with gratitude.
how can i not be?

david and i speculate that we have spent more money on the last four years of Sam's education and therapy than we did on both of our college educations combined. and it has been worth every single penny. we estimate that we will spend in excess of $100K by the time she graduates from 12th grade.
and we pay it gladly and with a grateful heart.
were it not for the shelton school, sam would not have the slightest chance at a normal life.

shelton is a private school. one of the most expensive in Dallas/Ft. Worth. as well as one of (if not) the best. we have been hugely fortunate in that sam has received scholarships from them each year. the shelton staff is phenomenal. there are none better, of this i am certain.

sam receives regular testing, daily speech therapy, weekly occupational therapy, physical therapy along with all the trappings of a typical education - music, PE, library time and drama.

they use a modified montessori methodology in the classroom so learning is largely student directed.

sam is participating in what started as a pilot early intervention program at shelton. on a private grant. small classes for children with learning differences AND speech challenges. so not all classes at shelton offer a speech therapist AND a teacher. only those classes participating in this program. there is rigorous testing annually to monitor the progress of these students.

i know this pilot program at shelton is being scrutinized by other schools across the nation and beyond. i know that the shelton administration has presented findings on this program at national and international speech and language conferences.

and still, i am not an apraxia expert. i don't have to be.
i live with it every day.
i don't read all the literature out there - as i once did.
when we finally had a diagnosis, i did my homework.
i asked the questions. i listened and and begged.
and sam started at shelton. and i have never, once, looked back.

for any quality of life that sam achieves, we owe gratitude and credit to the june shelton school.

historically speaking

2007-08-06T14:15:00.000-05:00

when sam was two years old, my pediatrician referred us to my county's early childhood intervention program because she was not saying as many words as she should. sam was evaluated by ECI specialist and they determined she did indeed have a speech delay.

previous to this, she hit all of her developmental milestones within normal ranges - but at the late end of those ranges.

at ten months of age, she had a closed skull injury. a hair line fracture.

after the diagnosis at two years, the early childhood intervention program in our county came to our home and worked with her twice a week.

at that time, i sincerely believed we would have her up to speed and ready for first grade on time.

after a year of ECI, she went to a PPCD program in a public school. for a year and a half. She had a very good teacher there and a new but enthusiastic speech therapist. her speech made no measurable improvement in that year.

it was then i realized i would have to take her education and speech therapy into my own hands. started doing research. talking to people. asking more questions.

insisted that the public school purchase the Kaufmann Praxis test to determine if Sam was apraxic. They finally did buy the test kit and administered it to her. The results showed a very high likelihood of apraxia of speech. She was still just a bit too young for an official diagnosis.

my research led me to the conclusion that she would require an education driven by her speech requirements. There was no such education to be found in the Dallas area. The nearest program that offered a communication immersed education was in Mississippi at The Dubard School. (see links) she was too young for Dubard still. but i was told to check out their Children's Center for Communication & Development. both on the campus of the university of southern mississippi. my Alma Mater.

we made the snap decision to drive over for the weekend and interview there. sam was accepted to the program that day. a week later, my two daughters and i moved to mississippi for the school year. i was pregnant with my son. we lived with my parents for the year while my husband stayed here in texas to work and hold down the fort.

we had finally made the decision to move to mississippi so we could keep Sam at the Children's Center another year and then hopefully to have her accepted into Dubard (they have a two year waiting list). She was making noticeable progress for the first time ever.

while house shopping in Mississippi, i was on the phone with one of my speech resources in dallas. she told me about a new pilot program for speech delayed kids at the Shelton School. i hung up with her, and called Shelton only to be told that yes, they did have a new program but that the class for Sam's age group was already filled.

i begged. and pleaded. and told them what we were willing to do for our daughter. PLEASE would they consider making a spot for her. They agreed to consider it if i would send them all of her educational and medical records asap. i copied them that day and overnighted the 10 lb. package to them.

a week later they called to let us know they had reviewed her file and were going to make a place for her.

my family could return to texas.

that summer, she attended a fantastic program at the Callier Center in Richardson.

and in the fall, she started at shelton. her class has a speech therapist and a teacher. both trained in the Association Method.

fall 2008 will be the start of her fourth year there.

along the way, we have also added the diagnosis of ADHD, Dyslexia and Bipolar Disorder. in addition, her teachers tell me she exhibits the characteristics of a child with a brain injury.