My Apraxia Awareness Message : We Need More Positive Experiences

We are finishing up our second school year of speech therapy.  I consider myself a fairly patient person but truth is I have come to realize that working with our school system has been an uphill battle.  I have cried more times than I can count.  I have been frustrated, defeated, and now finally feel like my son is receiving appropriate services after two long years.


Our journey began long before my son was three years old.  I knew he was severely delayed in speech.  I had no idea why.  I heard it all, mostly NEGATIVE:

* he will talk when he is ready

*it’s because he is the youngest and his siblings talk for him

* he’s a boy

* wait it out

* he is fine

His pediatrician minimized the issue.  Well-meaning friends and family told me he was fine.  Although they probably thought this was encouraging it was actually the opposite.  I began to second guess myself as a mother.  Was I overreacting? My older two children were early talkers with expansive vocabularies by age 3.  I have a master’s degree in psychology and expertise in brain development.  Was I not giving my child the benefit of the doubt in terms of the “normal range of development”?  Could he just be delayed?  Do I just need to relax? Will he really just spontaneously begin speaking sentences?  I had so many questions and concerns but I was getting nowhere.

My son was a typical 3 year old in many ways but he could not speak.  When I say “could not” I mean it.  If he wanted a drink , I would try to get him to repeat me (drink or milk).  Sometimes he would try while other times he would simply look at me. He had very little approximations and could not imitate sounds (except b and m).  He had no intelligible speech to the outside observer.   He said ba for everything .  He would screech or point at items.  Sometimes he attempted to converse but mostly he only tried to speak for a basic need.  One would think he did not know his colors or animals because if he was asked “what color” he would say nothing .  But if he was asked to point to a color he could do so.  I was confused….at about 12 months old his first word was his sister’s name. He said it twice and we didn’t hear it again.  A couple of other words came but also left.

Therapy Through the School District

As soon as he turned 3 years old I signed up for an evaluation through our school district.  After months of waiting for answers I thought I would finally be able to speak professionally with those who specialize in speech disorders.According to the school therapist he had an articulation disorder.  Before the evaluation I researched speech disorders in depth.  First, I dusted off my DSM-IV and looked up the developmental disorders.  Even though I had briefly pondered autism spectrum or another developmental delay, they did not seem to fit. Maybe I missed something in my graduate school days.  But as I flipped through the book I couldn’t find anything—articulation delay….phonological delay….maybe……BUT it’s more.   I turned to the internet and typed in something like “no speech at 3 years”.   Apraxia of speech emerged in the results.  The checklist seemed to fit better than anything else I had previously read (this one taken from http://teachmetotalk.com)

  • Limited babbling is present in infancy. These are quiet babies.
  • Few or no words when other babies are talking by age 2
  • Poor ability to imitate sounds and words
  • Child substitutes and/or omits vowel and consonant sounds in words. Errors with vowel sounds are not common with other speech disorders.
  • His word attempts are off-target and may not be understood even by parents.
  • He may use a sound such as  da for everything.
  • Often his errors are inconsistent, or he may be able to say a word once and then never again. The child understands much more than he can say.

I also found information on sensory integration disorder and that seemed to fit him more than ADHD.  Finally I had answers.   But the school therapist dismissed my suggestion of the possibility of CAS.  “He will be fine.  You should probably enroll him in preschool, that will help him tremendously.  He qualifies for 60 minutes per week of therapy. ”  I left her office with conflicting feelings—on the one hand I was relieved we would be getting services.  On the other hand I felt so alone.  The experience with the school was so methodical, no empathy.  Basically I felt I was to blame. We began therapy and soon another student joined during our time.  Group therapy, I was told, was beneficial to treatment.    I played the game.  After all, this was a professional….who am I to question their diagnosis and methodology when I have no background in speech pathology?

Private Therapy

Fast forward to the end of that first year—no progress made at all.  Again, I was devastated.  I began to feel hopeless.  He was now 4 years old and although he tried to talk he sounded like he was speaking a foreign language.  I would get excited when we would practice sounds because he was starting to imitate some but then five minutes he could not . We took the summer off of therapy and began again in the fall with the school district.  Over the summer I took him for an evaluation with a Brain Balance center.  The center’s philosophy on brain integration and the relationship between speech and sensory issues made sense to me.  Their assessment painted an accurate picture of his sensory problems but I was upset with the intelligence test.   They assured me his language deficits would not be a barrier to acquiring accurate data for the test but with my professional background  I knew that was false.  To make matters worse they just presented me with raw data, no psychological report stating language could have affected the results.  They placed him way below average in intelligence.   Brain Balance may provide a good service to those in need but I was totally turned off by the way they presented information to parents.  I knew that my child did not have cognitive impairments or at least not in the severe range that they were implying.  An IQ test , in part, measures what you learn in school and given the fact that he had not started preschool , it should have been noted.   Also , he could not sit still and concentrate on the test.  The cost of the program was very expensive and due to my issue with the test I could not justify using them, nor did we have the resources .

A new school year meant a new therapist.  It also meant group therapy again.  I patiently gave it about two months and finally I approached the therapist.  I said I really think my son has signs of apraxia and needs individual therapy.  If he cannot get individual therapy here than I am seeking private services.  She stated that she did see signs of apraxia and I could do both private and school therapy if I would like but they cannot offer me individual or a new assessment at this time.  Being new to the IEP world I had no idea what my rights were so I just made an appointment with a private therapist.   This was a life changer for us and I wish with all my heart that this was the first step I ever took rather than my last.   A thorough assessment finally yielded an accurate diagnosis: apraxia of speech along with articulation and phonological delays.  But beyond the diagnosis came the positive experience I had longed to have since the beginning of our journey.   For the first time in a professional setting I experienced empathy.  They understood my fears, my desire for appropriate treatment, and just to be validated as a mother.  It was not anything magical, but……….

They listened.

They were honest.  They told me progress could be slow, intense frequency of treatment was needed (4 days a week), and he will probably be in speech for a long time.

They cautiously explained potential future issues that could arise as a school-aged child (i.e. reading and writing).

Most importantly, they spoke and wrote about my son in terms of his STRENGTHS and weaknesses.  They saw my son as I saw him… a bright, motivated and energetic child with a speech problem but has a bright future ahead of him.

I thought I was crazy cherishing this experience but months later I watched the CASANA Family Matters webinar hosted by Kathy Hennessy .  She spoke about the many negative experiences families go through to get proper services but one positive experience can negate several negative experiences.  Parents need more positive experiences!

SCHOOL

I also decided to enroll my son in a private Montessori school.  I was extremely fearful of sending him anywhere because he was unintelligible to strangers.  How could he ask for help ? How can they help him with his basic needs?  His name was even unintelligible to strangers.   At four years old he was still struggling with potty training.   But I knew the Montessori environment would help his sensory integration and indirectly help his speech.  His teachers , staff and other children have been an extended family for my son.  He spent the first half of the school year working alone and playing alone outside.  This second half of the school year he been working with the other kids and feels more confident to attempt speech with his peers.   Although most of the time he is almost impossible to understand, his classmates take the time to listen and try to figure out what he is saying.  His teacher sees beyond his speech troubles and encourages his strengths in math and science while not forcing the language arts.  The beauty of the prepared Montessori environment is predictable and orderly.   The hands on materials are complex and self-correcting, which allows for him to work independently.  He is able to “show” what he truly knows the way he completes a work rather than the teacher relying on his verbal or writing skills.    No one in his school has heard of CAS but his teacher has been learning with me and has attended every IEP meeting with me this year.  She has been an advocate for me , another voice on our side of the table.

It has been a slow journey but these last several months I feel we have turned a corner on our apraxia path.  I feel we now have people on our side and that is important when advocating for a child.  In addition to his teacher, school, private therapy and now individual therapy placed in his IEP we are blessed with amazing friends and family who continue to learn about CAS to understand our son.  We live far from family so we rely on our gracious friends for help.  Like the Avengers ,I feel our team has finally assembled  .   

 

My son will be 5 years old next week.  He has a contagious laugh and smile that   lights up a room.   Though speech requires an enormous effort, he gets up and practices each and everyday.   He enjoys superheroes, climbing, running, listening to us read, and playing games.  He is now in appropriate treatment four days a week and he progressing each day.  He still has a long way to go but others are beginning to understand him more frequently.  He said “I love you” for the first time at 4 1/2 years old.  He is beginning to ask “why” about everything.  Most importantly, he is cognitively aware of everything and has been since birth.   I know this due to developmental psychology but to see knowledge start to come out verbally is a window into his soul. When I can piece together from the context I have heard him say “Statue of Liberty is in New York” and “George Washington is first president.”   He is my hero and I know he will beat this!

What do I want the world to know on this Apraxia Awareness Day?:

 

Please support your friends and family members.  Professionals do not dismiss a parent’s concern for speech.  Learn all you can about CAS and know the signs of speech disorders.  Do not dismiss a parent’s claim that something is wrong with their child.  It’s natural to want to comfort someone by saying it will be fine or wait it out but the truth is waiting produces more anxiety by prolonging the inevitable.   Early intervention is key to success! Most cities have free zero-3 programs and at three years old a child is eligible for free services in their school district.  Although it may not be CAS , but another speech disorder , treatment  is still important.  

Most importantly, try to create a positive experience for the parent.  A special needs parent goes through a whirlwind of emotions and can be exhausted.  Validate their experience. Empathize with them and give them hope! Help them get connected with support groups online or in the community.   One of the greatest fears for me is the future.  Seeing videos of older children have been an inspiration .   Hope has replaced fear simply by watching older children with CAS on the Apraxia facebook group page.  Every child deserves a voice and with awareness we can provide the positive appropriate resources for children and their families. 

Please spread the word of Childhood Apraxia of Speech.   My hope is that future parents will not have to search tirelessly for appropriate resources and treatment.  If you are worried about a child’s speech please visit:

Association for Speech and Hearing
CASANA–dedicated solely to CAS this organization has tons of resources for parents, teachers, and therapists.   Also contains information on applying for speech grants.

Slp mommy of apraxia –a speech pathologist with a daughter who has apraxia.  Her site is both inspirational and educational
Feel free to visit my other articles related to apraxia:

Let it Go
When a Child Struggles the Parent Struggles
Positives Strategies to Maintain Positive Outlook

About Jennifer Walker, MS

I currently blog about mindfulness, meaningful life-learning, Montessori and Childhood Apraxia of Speech.
This entry was posted in Childhood Apraxia of Speech (CAS) and tagged , , , . Bookmark the permalink.

2 Responses to My Apraxia Awareness Message : We Need More Positive Experiences

  1. Laura says:

    Love this!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s