Monday, January 25, 2010

Our Journey to Find Our Words

On January 12th, the boys all turned 21 months old. It is amazing how fast time flies! As we enter the last quarter of our second year, it was time for us to face the reality that one of the boys is falling behind in regards to speech. Andrew and Wesley have an exploding vocabulary that forces us to watch what we say in their presence. They mimic and repeat almost anything we say. In addition, they are starting to join together multiple words (ie. "Hi Murray" or "Up Please." Jared, on the other hand, is still the strong silent type. While it is nice to have a quiet one among the trio, it was time to check this out and see if there is anything we need to do to help him along.

This morning, Jared and I got bundled up and headed off for an evaluation at the FIRST WORDS project. We have been completing self-report assessments on the boys since they were 9 months old. Every three months, we complete a questionnaire and each time the results indicated the boys were on target. At 18 months, they determined a more in depth evaluation was needed for Jared.
The picture taken above is Jared right before we headed in for the evaluation. Doesn't he look adorable all bundled up?!? Well, we headed inside for our evaluation. We were led back to an evaluation room where the evaluator proceeded to describe the program and how the evaluation would proceed. Jared was as sweet as could be and was his typical quiet self. During the evaluation portion of the visit, the evaluator interacted with him attempting to get him to gesture or indicate what he wanted. She also evaluated he ability to point and look at something when she pointed. Lastly, she evaluated his 'imaginative play' and his ability to have appropriate engagement with her.

I observed the evaluation and saw him signing 'please' when he wanted something, he looked at what she pointed to and appeared to play appropriately with the bowls, cups and bottles that she gave him. During the evaluation, she said 'good signing' when he signed please and made many other positive remarks. After the evaluation portion was complete, I was feeling relaxed until she hit me with a bomb that shook me to the core. She confirmed that he has a significant communication delay but further went on to express concerns about Autism Spectrum Disorder. Upon hearing these words, I became very emotional and was left unable to truly ask appropriate and detailed follow-up questions.

Jared has always been our quiet guy that likes to play alone. He can always entertain himself by building blocks and seems to have a long attention span as compared to his brothers. I have viewed these things and as Jared's strengths but is is specifically some of these behaviors that caused the evaluator concern. She also indicated that she could not give him credit during the evaluation for gestures as he did not make eye contact while signing 'please.' She said he stared only at the object and called this an 'object fixation.'

While I agree that some of his behaviors line up with the classic Autism signals, Jared is very affectionate and does not resist social touching or social interaction. The evaluator referred us to Early Steps which is the early intervention program in Florida. This program will complete another evaluation on Jared and will coordinate support services for us. The first service we all know he needs is speech.

After this evaluation, I received us an out pouring of support from family and friends. I will never be able to thank everyone enough for how much it meant to know we were in the thoughts of so many. I am a huge believer in the power of positive thinking and it was these positive thoughts that helped us along on our journey. I also had friends share personal stories about their children both Autistic and those with only a Speech Delay. These stories helped me stay focused on taking this one day at a time.

Maria Leon specifically played a major role in providing support following this evaluation. Maria happens to be a personal friend of a well respected Speech Language Pathologist in town, Mary Pellegrino. I determined that a second opinion was important and scheduled an appointment with her practice. The earliest appointment we were able to make was on January 29th. However, after one call from Maria, Mary contacted me directly by phone. She talked to me about 30 minutes asking many questions about Jared. She suggested some things for us to try at home and then said that she was able to get him in for an evaluation on January 25th and would see him personally. Four days may seem like a short period of time but it felt like an eternity when waiting for that second opinion. Thank you Maria!

This morning, Jared and I were off again for another evaluation. This is Jared before we headed inside for our second evaluation. He already seems happier about this evaluation! He is also holding the first evaluation in his hand.
Mary welcomed us and proceeded to evaluate Jared for about an hour. She blew bubbles, played with several toys, had him slide down a 'mini-slide' and started working with him on enunciating sounds. He was very excited and happy during the entire evaluation. She knew that the first evaluator pointed out all the signs of Autism Spectrum Disorder and during the entire evaluation, she worked to put my mind at ease by pointing out all the signs that support a "rule-out" of Autism Spectrum Disorder (ASD). She stated that he learned very quickly, he had great eye contact, he transitioned easily from one activity/toy to another. Also, she stated the fact that he was able to attend the Gasparilla parade without having trouble supported a "rule-out" for ASD.

While I was overwhelmingly relieved to learn that was probably not our problem, she confirmed again a significant expressive communication delay. She recommended 2x per week Speech Therapy which will start on Monday, Feb 1. However, in addition to the speech delay, she expressed concern for a possible immature central nervous system (CNS). When Jared gets real excited, he gets real tense and shakes/shivers. She said that these 'tremors' appear to be a 'primitive response' to stimuli. She said the prior evaluator may have observed some of these responses and felt they were an indication of Autism however, CNS delay feels more appropriate. This is something that would be addressed through Occupational Therapy. We agreed to proceed with Speech Therapy and keep an eye on this to determine if OT is needed as well.

Until that is determined, she provided me suggestions on how to help stimulate the development of his CNS. She recommended that we increase our rough housing with Jared. She said we should throw him around, spin around with him, hang him upside down, tickle him a lot, put him in a swing-twirl it up-let it go and rub his torso with different textures. She said all of this will help stimulate his development.

Upon arriving home, I shared the good news with Daddy! While we have some things we need to work on, it does not seem like Autism remains on our list of concerns. We were also happy to immediately begin working with Jared....
We are going to have trouble keeping this type of fun therapy focused on Jared. There are two other wild boys that like to join in as well! So Daddy is going to have to flex his therapeutic muscles and toss everyone around!

The past couple weeks have been challenging and stressful. I am very happy that Jared is so young, he does not realize the purpose of these evaluations. He seems to enjoy meeting and playing with his new friends. We start speech therapy next week and I hope our journey to help Jared find his words is a short one. Also, I hope that Andrew and Wes afford him the opportunity to use them once he finds them!

Take care,

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