Tuesday, February 25, 2014

Guest Post: Happy 4th Birthday, Ryan Eugene!

So grateful to Cristy for sharing the story of her son with us. She is a good friend and support to me, and also a mother to redheads! I know you will enjoy learning more about Childhood Apraxia of Speech. If you or anyone you know is interested in sharing a story about your special needs child, email me at thespecialreds@hotmail.com. Enjoy!


I would like to introduce you to my 4 year old son, Ryan.  He was born on February 25, 2010, being very healthy.  Ryan sat up before 6 months and started walking at 10 months...and by that point I knew that we should have invested in a cow as he would eat us out of house and home!  At around a year he started to say simple one-syllable words like "dog," there were maybe 4 or 5.  By the time he was 18 months old he stopped talking altogether...not one word or sound.


We worried, but we have known other kids that took a little longer to talk, so I did research.  My husband and I prayed and pleaded, and then we made a decision.  We decided that we would give him until he was 2 years old to say even one word.    His second birthday came and he still wasn’t saying anything, so at his physical we requested a referral to a specialist.  His evaluation was done on the 1st of May by a brilliant speech pathologist named Debra.

After the evaluation she told us that our little boy had a profound speech delay, meaning more than 12 months behind.  She told us that she would not make a diagnosis until he had been in therapy for several months.  She recommended two 30-minute speech sessions per week.  However the only office that offered the needed therapy and would take our insurance was a one-hour drive from our home.  Our insurance also required us to pay $45 per session...that added to the $15 for gas to and from the office.  $60 per session…our hearts fell because we knew that financially speaking we just couldn’t put out $120 a week.  We decided that once a week was better than nothing, and for the next 18 months every Thursday afternoon we took him to see Debra.

We watched as she dragged sounds and approximations out of him..."n" came first and thus "no" entered into our lives finally and we were overjoyed to hear it.  We got to "arr-kee"(Barkley, our dog), "mom," and "I-eem"(ice cream).  The first time he ever saw or played with an ipad was in the course of therapy, and I watched as he thrived with it…he loved it.  We soon discovered his love for Batman "at-man"...and this ushered in our knowledge that our little made could make the most amazing sound effects ever while playing with his Batmans.  He started making car sounds, fighting sounds, and crashing sounds.  He has since become an expert at shooting sounds.

Between 6 and 8 months into therapy his therapist asked me if I knew anything about apraxia and having devoured everything on the internet about speech delay, I told her that I understood what it was.  This is when the diagnosis came:  Childhood Apraxia of Speech.  After doing much research I came to understand that this would take years to get him caught up.  But we were given the hope that with all luck on our side he would enter kindergarten without any problems.

Almost a year after the first evaluation we did another with the school district to get him started with them, so that he could get all the time he needed and not be held back because we couldn't afford it.  I discovered that things move faster when you already have a medical diagnosis in place.  We did have to go through the stupidity of a school nurse trying to give him a vision and hearing screening, which of course he wouldn’t cooperate with but it was amusing.  After my very first IEP, which was mind-numbing at best, I walked away knowing that neither of those women knew anything about Childhood Apraxia of Speech.

They made some completely unrealistic goals for him to accomplish; for example they wanted him to be able to say "elephant" when he couldn't even say "dad”.  I was skeptical about their ability to treat him, but I remained hopeful.  When school rolled around again he would start with whoever it was...and it turned out she was a God-send, because she was there just long enough to change the ridiculous goals on his IEP to something far more reasonable.  She also did the recommendation for CASANA for a new iPad, which he was granted and received before the beginning of December last year.

After watching my son struggle with language all these years, I realized how much the ability to speak is taken for granted.  Heaven knows I did before I had him; getting his sister to shut up was always the difficulty with her.  What I have with Ryan is a big jumble of frustration and anger, and he has no ability to tell me what is going on in his head.  I have learned to rely on the spirit to aid me in my attempts to understand what he needs and wants.  As his mom I know what he needs instinctually, and I have had to learn to curb my desires to just take care of it.  I have learned that he needs to ask first, and that I have to prompt him to ask.  When I don't understand he takes my finger and shows me, then we say what it is.  When the frustration becomes intense and we don't understand each other at all, then we hug a lot.  He lies in my arms and cries while I cry too, then we get up and play Batman together.  And every night before bed he says "oove you mom", and my world is right again.


I like to believe that I have become a more attentive mom, and even a more patient mom...but I'm not sure.  I have learned to listen more carefully for the little things.  I have learned that therapy takes time, lots of it.  I have learned the ever-increasing depth of a mother’s love.  I have learned to use toys and technology to help my son learn words.  But I think the biggest lesson I have learned is to celebrate the small victories and achievements.  We all have lofty goals for our children and sometimes we forget that they are children and so we forget that if we don’t make a big deal out of the small things then there will never be big things to celebrate.  As moms we have to take things one step at a time, and be grateful for the small steps.  It took almost 4 years to hear my son tell me that he loves me…that is our biggest step yet, and every time I hear him it melts my heart.  My son is amazing, and he has taught me love, and he has taught me patience.  I believe I am a better mom because of Childhood Apraxia of Speech, and I am grateful that I have been given the opportunity to learn it.

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