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Our family was about 6 months into therapy.  I still wasn’t sure how or if to talk about it to others.  In many ways it was a relief to be honest and open.  In other ways, it set my son apart from others.   Of course, there is the well reasoned mid-western argument, “its nobody’s business but your own”.    I hedged.  I told quite a lot of people about speech therapy, but hesitated on telling people about developmental therapy.  Somehow development therapy carried a stronger stigma.  There was sometimes this awkward silence when I scheduled play dates, and I used the phrase, “we can’t make it Wednesday, E has therapy”.

In a bit of irony, it was the developmental therapy that was going so well.  Our therapist was amazing.  If E wasn’t grasping a skill, she would try a new angle, a new song, or a new book.   She was even gifted at teaching new signs for E to master. Meanwhile, we seemed stuck in a rut with speech therapy.  Its not that our therapist was bad, she just didn’t challenge E.  She once even said that she was afraid to upset him.  He was unchallenged and not making progress.  My husband was home for a day and observed a session.  He described it perfectly, “She’s not doing anything different than us, and we don’t charge a fee.”

This is where I must give the credit to the CDSA.  Our coordinator did several observations and brought up my problem with no prompting.  Paperwork started, but the real blessing was that the CDSA handled all the communication mess in terminating our former speech therapist.  It was a relief to not have to make that phone call.  Of course, there was the irritation in finding a new therapist.  A new list was generated, but shorter this time.  I didn’t have an recommendations so I choose the therapist with the most education and the most experience.

No one likes to change a  toddler’s routine, but sometimes things need to change.  E needed to be challenged.  I had to be brave and step out of the status quo.  I wasn’t doing my son any favors in providing him with a therapy that wasn’t working.  I am so lucky to have had the support system of the CDSA, my husband, and an experienced developmental therapist to make the transition and the decision easier.

I think I had to keep telling myself over and over, “There’s no harm in trying therapy”.  It was my way of convincing myself to move forward.   I had in my hand the opinions of experts that my son had delays.  It was now my job to decide what to do.   Thus my new mantra, “Whats the harm?”

One of the services of the CDSA is to assist in finding a therapist.  E was being referred for development therapy and speech.  While I saw speech as an immediate need, I would have to wait.  In order to rule out a physical problem with speech, E would need his hearing checked.  The CDSA offered this screening, but we had to get scheduled, and that had a bit of a wait.  Meanwhile, I did have to choose a developmental therapist.

The CDSA only assists with finding a therapist.  They take your time availability and then send it out to area providers.  Then your CDSA coordinator sends you an email with the those who are interested in taking you on as a client.  Sometimes you get detailed biographies and credentials, but some provide very little information.  I had a very hefty list of developmental therapist available.

I felt lost in a sea of credentials I didn’t understand.  Some lauded their ability to work with autism, but there wasn’t evidence E even had autism.  I did look for those who had gone further in their education and for those with experience in language delays.  That narrowed the list to about five.

Next, we took to the community.  Well the electronic kind at least.  My husband and I scoured the web and posted on work community boards seeking a recommendation.  Lucky for us, we got one.  We decided to try a woman name Sheila.  She was a former teacher of foreign language turned developmental therapist.  I was not sure how a therapist works with a mute child, but I was willing to try.  What harm could it do?

I must interject to this story the financial aspect of all of this.  The CDSA offers their assistance for free.  Screenings are also free if done through the CDSA.  (If your child is 3 and above this is done by the county school system)  However therapy is not free.  The CDSA does assist families in low income, and has a sliding pay scale.  So you might qualify for 90% assistance, 10% assistance, or if you make enough, the bill is your responsibility.  The other good thing is that some therapies are picked up by your insurance company.  One therapy not covered by most major insurance companies, developmental therapy.

Another thing to keep in mind, is at any time during this process, I could step away.  There was no one pressuring me or making me send my son to developmental therapy.  The ball was always in my court.  Thus, it was decided that Ms.Sheila would begin to give E therapy once a week in my house.  The poor dog would be jealous.

There is nothing that developmental specialist love more than testing!

If your child is ever suspected of having a developmental delay, be prepared for lots of evaluations.   Once our family was referred to the CDSA (see prior post), it was time to be evaluated by their office.  It seems the pediatrician’s office evaluation was just a small test to see if we needed further testing.

Emotionally I was simply worried.  Since no one wanted to say  anything of substance, other than further tests are needed, I had no reason to be sad.  I was simply confused and overwhelmed by the process of it all.   I still had that voice of skepticism in the back of my head that said my kid would grow out of this.  My voice of reason, and my husband, reminded me that there was no harm in therapy and no harm in testing.

In fact the testing is generally worse for the parents than the child.  The evaluation took place in our home.  Which for us means an earnest attempt to get some dog hair out of the carpet, and to put poor Zelda out back.  Our coordinator with the CDSA came along with an evaluator.

At first there was a just a lot of paperwork.  I don’t remember every detail.  However, I can say that there was an endless barrage of questions.  Does E feed himself with a spoon, does he babble, does he stack blocks, how many?  E was completely freaked out at the experience.  I had no idea there was a set number of blocks he was suppose to stack.  Who forces their child to stack blocks?  At one point E was given a baby doll and told to feed the doll.  E was completely uninterested.

Well of course he wasn’t interested.  He’d never played with a baby doll.  I of course told the evaluator, but I was dismissed.  I was on edge the entire time and I’m afraid so was E.  E just withdrew from the evaluator’s requests.  The more they tried, the more he withdrew.  My heart was broken, but I knew it would be over soon.  E was only 16 months at the time.

It took a very short time for our initial evaluation report.  It was difficult to read.  While I anticipated his speech to be delayed.  I did not anticipate any other delays.  It didn’t dawn on me that my child had any other problems.  However, unlike most mothers, my child’s delays and difficulties was in black in white on the page.

My first inclination was to of course argue with the report.  That’s not my child!  My son doesn’t have problems with eye contact.  He always answers when I call him.  Why is important that he point with one finger rather than use his whole hand?  Who are they to judge my child after spending 2 hours with him.  Of course, arguing with type written reports will only eventually only put me into therapy.

Again well meaning people assured me that E was fine.  Time would heal all.  In my heart, I knew that E was not fine.  I could see that E needed help.  I just had to be strong enough to get him the help he needed.  Part of the process and the strength, came from my loving husband.  He reminded me over and over that therapy can only help.

On to the next phase: finding a therapist

The continuing story….yes I know I stopped writing for a while, I have my reasons.

E was a wonderful boy.  He was smiley and quick to meet physical challenges.  He wasn’t talking yet, but it didn’t seem strange at first.  Boys tend to talk later than girls.  Also when infants concentrate on one skill set, such as large motor, they get slightly delayed in other aspects of development.  Since E was all about walking and climbing, I just didn’t worry about his language.

However as time went by, it was clear that he might have an issue.  It wasn’t just that he wasn’t talking, but he wasn’t making sounds.  Before E turned 1, I had heard noises cooing, and attempt at sounds, but after he turned one, nothing.  My house was silent.

At a checkup at the pediatrician, E’s lack of speech was brought to light.  An evaluation for development delay was suggested and scheduled.  My mommy senses began to tingle.  One of the known signs of Autism is losing a skill.  He was making some sounds, and then nothing.  You start to question everything.  I tried to remain calm.  My happy smiley son didn’t seem to have major issues, he was just quiet.

The first evaluation we did was a nightmare.  It was done in one of the exam rooms in the doctors’ office.  E was scared from the moment the door closed behind us.  He shut down fairly soon into the process.  I knew the results would be troubling, but I also knew that the evaluation wasn’t a true picture of my child.

I remember we went on vacation trekking across the midwest to visit family.  We were eating with old friends at Imo’s near St.Louis when I got a call to schedule E for a fuller evaluation and recommendation for therapies.  I took the call in the bathroom and it was a little daunting.  There wasn’t enough information yet for me to really worry, but I wasn’t calm either.

The internet is a dangerous tool in the hands of a paranoid parent.  E was young and had some warning signs for Autism.  I tried to talk to some of the neighborhood moms.  They all wanted to be reassuring, and thought E looked like a healthy happy child to them.  All I could see was a quiet child who shied away from others.  From E, there was only silence.

What the phone conversation in Imo’s  laid out was E was being referred to an organization known as the CDSA .  CDSA stands for Childrens Development Services Agency.  Its a branch of the Department of Public Health and the agency in charge of the state Infant and Toddler Program.  They are dedicated in catching development delays and providing appropriate therapies.  I had just stepped into a system.  It was my turn to be silent.  I was stunned by it all.

For more information about CDSA: http://www.beearly.nc.gov