Musings from Mom on Mother's Day Weekend

Life has been clipping along at a pretty steady pace lately.  We've fallen into the routine of 25 hrs of ABA therapy plus an hour of speech and OT every week.  Matt is making slow steady progress.  He occasionally has his setbacks, but overall he is doing amazing.

One of the biggest life changers for us has been that we no longer have to clean up his poop and pee multiple times every single day.  Forcing him to wear underwear and use the toilet is finally paying off. He still needs prompts to remind him to go, but he is so close to being completely potty-trained at last!  I can't even begin to express how proud I am of my little guy for this major accomplishment.  Many of the children with his syndrome really struggle with toilet training.

Growth Hormone therapy has been one of the best decisions we ever made on Matt's behalf.  He turned from a sluggish child to an energetic one literally overnight.  This has carried over into his response to therapy as well.  He is able to focus better and for longer periods of time.  When I get home from work he actually runs to meet me at the door and hug me.  I had resigned myself to the fact that I would probably never get that type of a greeting from Matt-man.  My heart overflows with joy and thankfulness each time I see him running to me with open arms.  What an incredible blessing to this mother's heart.  It has taken 4 1/2 years.  He is also physically growing taller from the Growth Hormone.  He grew as much in the past 3 months as he had grown in the entire year previously!  It is a huge relief to see his growth curve turn around.  He is not fazed by the daily shots, and non-medical dad has taken on the responsibility of giving him his injections every other week.  I'm proud of them both.

We are tossing around the possibility of integrating Matt-man into a typical preschool part-time this fall to prepare him for kindergarten next year.  If we do, he will have one of his behavioral therapists with him to guide him.  I hope this will work out.  I'd love to see him integrating more with neurotypical children.

Speaking of integration, Matt-man is on his first ever tee-ball team!!  He is on a team with his 6 year old brother, Nate, and many of Nate's classmates.  They are all very protective of Matt-man and extremely helpful.  He has a lot of difficulty with the mechanics of fielding, throwing, and hitting the ball, but that kid sure loves to run the bases.  He has a look of pure joy whenever he gets to run with his very unique gait.  I think it puts a smile on everyone's face to see him running with all of his might and a grin on his face!

The biggest thing on my mind this weekend in regards to Matt-man is that he is happy.  He works so much harder than the rest of us just to do the activities of daily life which causes some frustration, but for the most part he is smiling and giggling as he goes through his day.  He loves his brother and sister more than anything else in the world.  He loves to sing and bang on the piano.  He loves his sign language videos.  He loves our chronically misbehaving beagle, Lucy.  He adores a good dirt pile full of dump trucks.  He doesn't seem to worry at all about what others think about him.  He loves to wrestle with dad and get tickled to pieces.  He begs daily for a "nice, warm bath" with his siblings before bed.  Perhaps my favorite thing about him is that he loves to curl up on my lap and read book after book after book.

I wish life was easier for Matt-man and that he didn't have some of the medical issues (such as the growth hormone deficiency, recurrent ear infections, hypotonia, feeding difficulties) and sensory processing issues that come with his syndrome, but I am conflicted on whether I would ever want him to be fully "cured".  So many of the things that we have come to love about him are intrinsically tied in with the 15q24 microdeletion syndrome.  He just wouldn't be our same little Matt-man without these traits.

Pray that he would continue to improve on his toileting and communication skills and his other activities of daily living; pray that God would continue to give us patience and understanding as we deal with all of our children each day; and pray that God would continue to use Matt-man to make a positive difference in the lives of all of those around him in his own unique way.

Matt-man, age 4 1/2 yrs

ABA (Applied Behavioral Analysis)

Matt has been in ABA therapy at a private preschool for 2 1/2 months now.  It was so hard to go from having my little boy home full time with me to suddenly being in school for 25 hrs a week. 

ABA is hard work for a little 3 year old.  The first few weeks he would come home exhausted, go right to bed, wake up for dinner, and go back to sleep for the night.  Every day was the same thing.  I have to believe this is the right thing to do.  The most widely accepted research states that this is the best way to help a child with autism.  It is hard as a mom though.

I wish I could keep my little guy home with me.  Let him spend his days playing outside with his brother and sister.  This is his big brother's last year at home before starting kindergarten - part of holding Nathan back a year was to give the boys another year at home together to just be kids.

So, is the ABA therapy working?  I guess so in some areas.  They tell me Matt is passing his programs and doing great.  He is becoming more independent.  The potty training is starting to actually produce some good results. 

I don't know if he is talking any more though or connecting with us any better than before.  It's only been 2 1/2 months, so I'm sure these things will come, but I wish we could see big results a lot quicker. 

He is just now getting to the point where he is not utterly exhausted after school every day.  Now I have to make the decision on whether to get him started in his prescribed occupational therapy 2-3 hrs per week and his prescribed speech therapy 2-3 hrs per week.  More hours of not interacting with my son, but his developmental pediatrician feels that he needs this.  My mommy heart wants to just let him be 3.  I wish I knew what to do.

The Long Road to an 'official' Diagnosis

There is enough awareness being raised in this day and age that most of us know how crucial early intensive treatment is to having good long-term outcomes with autism.  With that in mind, I assumed that once I mentioned my concerns to Matt's pediatrician the referrals and treatment plan would follow very quickly. 

I emailed the M-CHAT results to my son's pediatrician that very night.  A month later we talked about them at Matt's routine 3 year old check up.  A month after that we finally got in with an occupational therapist for an evaluation.  She was concerned that he might be on the spectrum, so scheduled us a follow up appointment to get a 2nd opinion from a speech therapist.  That appointment was scheduled several weeks later (all this time, my son was not in any type of therapy, mind you).  The speech therapist had the same concerns and recommended an appointment with the developmental pediatrician.  The earliest appointment the developmental pediatrician had available was 4 months out (I later learned that this is not bad compared to some areas of the country where patients have to wait 8-9 months).  We and our general pediatrician called the office several times, which is probably why when there was a cancellation, the developmental pediatrician offered the appointment to us - this allowed us to get in 3 months sooner than we would have. 

The diagnosis was pretty clear cut and expected, our son was autistic.  For us, the journey from the failed M-CHAT to an 'official' diagnosis was almost 4 months to the day, and this was significantly shorter than most people have to wait. 

Okay, so now what?  The doctor recommended 25 hrs per week of Applied Behavioral Analysis (ABA) therapy.  He recommended we get an educational diagnosis of autism through the local school district so that we would qualify for our state's autism scholarship which we could use to pay for one of the private autism schools in the area if we were willing to opt out of the public school options.  I later found out that getting an educational diagnosis of autism would have qualified him for this program even if he never received the medical diagnosis! 

If I had to do it over, I would have set up an evaluation with our local school district the minute I had concerns.  We could have gotten that educational diagnosis and started ABA therapy much much sooner!  Instead, it was another month and a half waiting for that educational diagnosis and then I had to submit all the paperwork to the state to get approved for the autism scholarship.

My son was not yet 3 when we had our first concerns that he might be autistic.  He was almost 3 1/2 when he had his first day of ABA therapy.  There is something wrong with our system.