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Friday, September 23, 2011

Those wobbly legs

Abby finally had her OT evaluation today.  The OT said she will be observing Abby some more due to concerns with her muscle tone.

I feel terrible that this whole time I thought Abby was lazy.  The dragging of the feet - the not sitting up straight - the constant crying during her dance classes - "Its too hard Mama".  I was prepared for the sensory concerns.  But I was not prepared to hear about concerns regarding Abby's physical being.  She has always been an active healthy kid.  A mellow kid compared to her brother but still energetic.

As I type this I see her laying down instead of sitting, her limbs just as lax as can be.  Is this just because she is relaxed?  Or is this her problem with muscle tone?  How can I help??  What can I do to help her?  So many questions are gathered in this concern.  So many questions that must wait until net week to be answered.

Another bump in our journey with Apraxia.

Friday, August 5, 2011

What do you want?

"EH" - "EH" - "EHHHHH" this is the sound you can hear from my 15 month old throughout the day.  Does he want food?  Does he want to sleep? Does he want a toy?  What is it that he wants?  I can tell you on most days I lose a little bit of the patience that I have built up over time.  "What do you want!?!?!"

It is like when you brought your newborn home.  Every sound that new precious package made you soon found out meant food, sleep, bond time, playtime.  I feel this 15 months later.  Like I am trying to guess what every cry or sound means.  The problem lies in the fact that my little man has specific wants now.  He wants "that" toy or "that" thing to eat.  It's a guessing game - a long, long, long guessing game.  Eventually you will get what he wants but it takes a while - or he just gives up on you.

So many of you may be saying "well, Melissa, come on he is only 15 months".  I respond by saying that that is what we told ourselves about Abby for the longest time.  Well she is only 18 mths, she's only 2 year, she's only 3.  When does it end??  I refuse to play that game.  Andrew is trying to tell us what he needs - but all that is coming out is that he needs something.

Finger pointing - thats what I want!!  I want him to point to what he wants.  Point to what he needs.  This most children do at this age - but expressively, Andy does not use this communication skill.

The state we live in offers an early development program called Birth to 3.  Given that Abby has CAS we thought that we should have Andy evaluated.  Just before Andy turned 15 months B23 came to evaluate Andy for any developmental concerns.  There are many areas of concern regarding Andy.  After Andy's 15 month check up with the pediatrician they are also concerned about Andy's development.

Most of the concerns regarding Andrew are the following:
In Communication:
Slightly below average in Receptive Language: this is the understanding of language that others speak
Significantly below average in Expressing Language: this is is the language that an individual uses to make verbalizations and to use words.
In Adaptive (self - Help) - this addresses eating, dressing, toileting and personal responsibility.
Andy was assessed to be significantly below average.

The plan??  Well we have a few more tests to have done on Andy - a Oral Motor Control test and a hearing test.  However, the group found Andy significantly behind and therefore will start working with us (Andy & his family) on adaptive and communication issues.

Andy's service coordinator and I spoke at length yesterday about what the needs of Andy and the needs of his family is at this point in time.  The biggest thing is the ability to communicate.  Although CAS is not diagnosed until much later - there was talk about how the areas specific to his delays are also areas of delay in children with CAS.  Because of that - the first thing we will try is getting Andy to point to pictures.  The other goal is to introduce signing.  Andy will start receiving services in 2 weeks.  We are hoping that we can at least get Andy to start gesturing.

Until then we will try our best to understand "EH".

Thursday, August 4, 2011

The Degree of Apraxia

Children with Apraxia has varying degrees of other issues.  I have spoken to some parents who also experience physical praxis issues, severe ADD and other planning, sensory and attention issues.  I am thankful that Abby is not at the severe end of these delicate co-disorders.

If someone was to ask us a year ago if we thought Abby had attention issues I think it fair to say that we would question whether we knew that answer or not.  What is normal 3 year olds behavior and what is not?  A question we are constantly asking ourselves, Abby's therapists and doctors.  There would be times where Abby would not pay attention to anything; although there were other times where she was attentively involved in one activity.  So how did we break the code and what was our observations?  We decided that Abby was a typical 3 year old.  If something did not interest her, if she didn't want to do one specific thing then she would venture elsewhere.  However, if you found something she enjoyed, something that interested her then she would be completely attentive.  No ADD for this little girl!

Follow through however is something Abby lacks.  Directions need to be given in one action prompts.  "Abby pick up the doll" once the doll is picked up we can say "Abby put the doll in the toy box."  The difficulty here is that something can not be vague.  She doesn't understand underlying meaning such as "go clean your room" or "pick up the toys".  Originally the concern was if Abby's receptive language was delaying - but when asking meaning of words and phrases she excelled.   Her only area of lacking was in directions.  First do this and then do this would translate into do something else.  She did not get frustrated with this issue - however, we parents got extremely frustrated.  Now at 4 we can give her 2 alike commands "go pick up that doll and that toy" or "go pick up all the dolls" when she goes to get the items we can then say "put the toys in the toy box."  However, we can not give both commands at once. When Abby was diagnosed Apraxia we realized that this may be a planning issue.  She understands what we are saying she just can not make a plan of action to complete the command.

Ah, Sensory.  A few of my gifted mother friends deal with severe sensory issues.  The most sever being on the Autism spectrum.  So I never thought that my little girl could have such sensory issues.  Or at least she never openly expressed them.  I should scratch that last sentence.  We didn't know she was expressing sensory issues we just thought she was being a kid.

"The white diet" - yes this is actually what pediatricians call it.  It consists of pasta, potato, apples, milk, etc etc etc.  This is what we were told was normal for some children.  Shortly after the bottle was taken away - Abby refused milk.  Abby never tolerated protein other then chicken or egg - even when she was taking those first bites of food.  At about 1 1/2 we experienced the no temp issues.  If it was cold or it was luke warm it was a no go!  Everything needed to be room temperature; juice, noodles, fruit.  At about 2 1/2 Abby developed the ability to withstand cold foods - now we introduced yogurt, popsicles, cold fruit.  However, to this day, now 4, she will not do hot foods.  So we still cool down all her dinner - I should say her noodles and chicken.

Textures....  An evil thing in this house.  Abby can not stand different textures in her mouth.  Let me use toothpaste as a prime example.  Abby tolerates training toothpaste, smooth and water like.  She is 4 now she is suppose to have made the move to adult toothpaste.  She screams... cries... chokes... gags.  It is a drama fest when we try to used adult toothpaste.  We have tried every type - different colors, different textures, different tastes.  Mouthwash - out of the question.  She complains that it hurts (a common complaint on foods or items that have different textures - "hurts".)

Noises.... Abby loves to dance.  She was successful in her little tutu performing her dance on stage.  We have to thank her dance instructor for her success.  During dance class the instructor noticed that Abby rarely put her hands down.  They were always somewhere on her face, most of the time on her ears.  As the recital drew near and the music got louder and louder the more Abby withdrew from the moves and held her head.  Abby's dance instructor has a son with Autism and put a plan into action.  Every class as the music started getting louder she started to put more cotton in Abby's ears, and then she started taking the cotton away.  Abby stood on stage 6 mths later performing every move with no cotton in her ears.  It's a great experience right?  Well it seemed that over time Abby became used to the music and sound of the tap shoes - therefore not needing the cotton.  But... there is always a but when sensory issues rear their head.  The but here is that - she was used to one sound - tap shoes and one song.  Shortly after this we notice her holding her ears a lot.  The sound of loud laughter, the loudness of a movie theater, the noise of children at play.  She likes these activities but she can not enjoy them because her hands are always at her ears.  I feel bad for her.  I want to cry.  That is no way to live with your hands always at your ears.  Abby will start working with an OT as soon as the school year begins.  I am hoping we can make Abby's life a little more joyful.

Along with the specific speech delay's Abby shows other areas of concern such as texture sensory, audio sensory and temperature sensory - but these are all things we can concur - all things we can work with.  Abby can learn - we have seen it with the leaps and bounds she has made within her speech and I believe with all my heart that we will see it when she starts working with an OT.  For now I shall carry some cotton in a small little plastic bag in a small pocket in my purse for anytime my daughter needs a break.  For now I will give direction one step at a time - one item at a time.  For now I will feed her chicken and noodles and make sure she takes her vitamins.  The Lord gave the me gift of a daughter and the Lord gave me the patience to withstand the little bumps.  The Lord gave my daughter the will to succeed and the Lord will see that she does.

Monday, July 25, 2011

My Children

I realize now that I have not introduced you to my children and therefore I must rectify that situation!!

My daughter is Abby.  She will be turning 4 at the beginning of August.  It is so hard to believe!  My little girl - no longer a baby - no longer a toddler - officially a kid - and officially entering that stage of manipulation.  You know the "if you love me", "but so and so's parents let her"; and the lying stage "but Daddy said yes", "I didn't hit Andy".  For those with kids this age you know what I mean.  No longer are the tantrums taking up 2 minutes on the floor screaming but they are suggestive and mean.  It's slamming doors and throwing toys.  Ah motherhood!!  But my little girl is one of the most stubborn persons I have ever met - and because of that she excels at all she attempts to do!!  She hits a baseball with a bat without a tee, can hit a golf ball on her first attempt, memorizes songs and makes up her own words.  But most of all she overcomes a specific speech disorder on a daily basis.  Bless her heart she actually coaches people into understanding - and even is patient to repeat her missed words to get her point across.  Although occasionally she gives up and changes the subject she does try to get any other person to understand her.  She is my little princess!  I intend to follow her progress as she continues to battle with Apraxia.

My son Andy is as much of a challenge as his sister but in different ways.  He is 15 mths old and a terror around the house.  He climbs and destroys.  A boy to his core there is no mistaking his brute-ness.  Like his sister he rolled over a little early and crawled a little early and walked a little early.  But where as Abby was trying to say words at this age Andy has a problem saying anything at all.  Let me give a quick background on my little brute.  He was delivered early - cause quite frankly neither he or I wanted him in any longer!! : )  He suffered from severe jaundice right after birth and was under the lights for 3 days.  Severe was an understatement - Andy's bilirubin was 14.7, at 16 he could have suffered from brain damage. Andy also suffered from feeding issues due to a severe tongue tie.  Tongue tie is a condition in which the tongue is connected  from base to tip to the bottom of the mouth.  Andy gained no weight his first month because he was unable to nurse or properly take a bottle - we were syringe feeding him.  We decided the best route was to clip his tongue - he was able to feed within seconds of clipping the skin that connected his tongue to the bottom of his mouth and after that gained weight pretty quickly.

Why all this background that I am filling you in on??  Abby's SLP had indicated that Apraxia is hereditary and commonly found in sibling so we should watch Andy close for any problems with speech.  When he turned a year the SLP noticed that Andy didn't babble and showed no interest in speaking.  We were able to get "Mama" out of him but only briefly and not consistently.  So Abby's SLP suggested we get Andy assessed for any developmental or speech issues.  So we did.

The result - severe delay in speech in areas of expression and adaptive qualities.  However, Andy's cognitive abilities ranked off the charts.  We have been having problems with Andy recently with tantrums.  He will scream at us and if we do not get him what he wants or understand what he needs he will throw himself on the ground or start head butting anything close (pillows, walls, you).  The therapist doing the evaluation said that because of his strong cognitive skills and his lack of speech we are probably witnessing his frustration at not being able to communicate.  Andy qualified for speech services to start in a month or so.  The goal now is to see if he is delayed because of the tongue tie at birth or does he have something more severely wrong like Apraxia (hard to diagnose before 2).  Andy's first goal will be to drink out of a straw....

So both my kiddos have their own version of speech delays.  I wait to one day hear and understand them.  Every word.

The Joy of a "Doughnut"

I don't know how to explain how proud I was when my daughter made the "t" sound in final position.  I remember asking her what she would like for breakfast and as clear as any 3 year old could be she said "I wanna doughnut."  I couldn't help myself I cried.  I called everyone I knew and had her repeat the word.  Every repeat was right one.  Every single one - which is a big thing for a child with apraxia!

I remember being proud with the first roll over, the first crawl, the first sound and all those other important firsts.  With my daughter I consistently get firsts and I consistently cry about them!!  The first time she made a "K" sound the first time she said a consonant/vowel (C/V) word,the first time she said a whole sentence.  These are firsts I will always remember, just like when she used to scootch backwards around the living room.  She makes me proud everyday that something new takes route in her words.

I wait patiently for my son to also take flight with his speech - for I know I will be as gracious as I am with my little girl.

Saturday, July 23, 2011

Apraxia of Speech

Imagine if you knew the words you wanted to say but when you put out the effort to say them the words became intelligible?  Frustrating!  Imagine trying to understand and translate for someone whose words were missing? Frustrating!  But that is every day in a family who have loved ones with Verbal Apraxia.

Apraxia (CAS) is a specific speech disorder in which a child has difficulty planning specific movements with their jaw, palate, lips and tongue in order to create speech.  The brain does not tell the muscles to perform in the right sequence and therefore words become intelligible.

My Daughter was diagnosed with Apraxia when she was a little over 3 years old.  When she was 2 she was diagnosed with ELD (Expressive Language Disorder) but did not qualify for speech services.  When she turned 3 we took her to be evaluated by the public school district.  At this point any words that she had used in the past she had dropped and no longer could say.  She was considered non-verbal.

My Daughter started working with a school district assigned SLP (speech and language pathologist) with the assumption that she had ELD.  The SLP evaluated her in several categories and learned that her vocabulary was above normal expectations for her age and she was able to used that vocabulary properly.  This ruled out ELD as a possible diagnosis.  My daughter showed no signs of any other speech related delay so the SLP started working with her through a phonic approach.

After several months of this approach my daughter showed no improvement and in some cases had actually dropped sounds that she had previously mastered.  Her SLP decided to take another route.  She decided to work with Praxis Cards.  Praxis means "planned movement".  These cards broke down words with wrong sounds that moved into right sounds.  A progression of sounds that lead to the right words.  She did well with Praxis cards but there was a continuous loss of progression or addition of sounds that were not in the words - such as an "a" at the beginning or end of a word.  My daughters SLP was able to diagnose her with Verbal Apraxia through her observances of the inaccuracies of my daughters speech.

Now that we had a diagnosis we knew that there would be more issues to come.  Soon my daughter started to show signs that a sensory issue existed - signs that when she was younger we thought was "just her age".  Such as not wanting to eat certain foods.  Being on the "white diet".  Now at 4 she still eats hardly anything.  She does not like certain textures - she will tell you that colored foods "feel silly".  She also can not handle foods that are warm or hot.  She does ok with cold things like ice cream and popsicles but her dinners meals we have to bring to room temperature before she will eat it - no hot temp - not even luke warm.  She also confuses hot/cold and hearing/smelling/tasting.  For instance she will cover her ears if something doesn't look right or cover her mouth if something is too loud.

So our journey with Apraxia begins.


find out more about Apraxia @ Apraxia-KIDS

A few specific Links:
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