Letters to Heaven: why we Light it up Blue!

Our son’s journey thus far…

Some may wonder why my husband and I pledge to “light it up blue” on April 2^nd, or why we share so many autism links. And, I can’t give a simple response like “my son has autism” because it’s not that simple. We do not have an official diagnosis and are not seeking anything official at this time. Here’s why, and our story:

When Joshua turned 2 (July, 2011) he knew all the letters of the alphabet (both upper & lower case), but he was not talking or saying simple 2-year old words on a daily basis. He also had some “quirky” things like the way he played with some of his toys (repetitions, patterns), and some sensory things with certain situations that involved music and songs. The musical aspect was consistent to him as far as what upset him, but it was not consistent to all music in general. It was only certain situations and certain synchronizations and speaking in unison, or certain people mimicking a song.

So, we brought up our concerns to his Pediatrician, at the time, and she gave us the number to Anne Arundel County’s Infants & Toddlers program (“ITP"). She said they offered an array of services, including speech therapy, and that they did specialize in autism and other developmental disorders. Actually they specialized in pretty much everything it seemed. They had a broad range of services. I HIGHLY recommend the program to anyone.

Our first visit to Infants & Toddlers was less than beautiful. It was me and Joshua in a small room with 2 or 3 other people and Joshua being confined in a corner of the room with a desk in front of him to try and keep him contained for some basic play-type activities and tests. This was the initial “testing” to determine eligibility. All of the ladies there were great, but it was overwhelming to Joshua (and me). Since Joshua didn’t cooperate too greatly and was more disturbed with the confinement we didn’t get too far with showcasing his true abilities. It wasn’t until one of the ladies turned on her iPad and gave him an alphabet activity that calmed him and captured his attention with delight. Little did I know he would have an early love for electronic devices, and handle them pretty well, I should also add. So, this iPad fun occurred towards the end of our meeting time, but they still got a little peak at this cute, sweet child of mine.

The program staff relied mostly on the 8 or so page detailed profile I completed at home and handed in during this initial meeting. Joshua was determined eligible for the program and early childhood intervention (“ECI”) services could begin.

We started with weekly 45-minute home sessions with an assigned specialist (special educator). Heather was great. Joshua liked her and even though he struggled a lot with adult-directed requests and activities, we still made progress. I tried to use the picture schedule to complete 3 tasks at hand, and it was really, really hard. Joshua did not want to do what we wanted him to do when we wanted him to do it… This has gotten so much better… but, back then, oh my. He was so self-motivated and self-directed that it was difficult to take him out of context and into something different. He was extremely rigid. Routine and structure were super important to him, and still are. But, with maturity, growth and tips, we can get around some of that now and it’s not as much of a meltdown. I found now that explaining things ahead of time in detail to Joshua helps with flexibility of some things. Joshua’s vocabulary improved greatly during the next several months and just continued to sky rocket beyond that.

So, we saw Heather for about 5 months. In between her visits we would sometimes get a visit from Dena, one of the Occupational Therapists. Dena was fantastic. Joshua immediately took to her and Dena could get him to do a lot more than anyone else could I guess because he meshed so well with her. She got him to practice putting small items into containers (working with grasp and muscle control in his hands), touching putty, pulling it apart, and putting his hands and various toys into a container of dry beans or some other funny texture. The looks on his face at these times were priceless. He was so disgusted by the new feeling, but he did it!

We also had a visit from the Program Director to discuss progress and satisfaction with the program and other services offered. We finally decided sometime between December, 2011 and January, 2012 that we would start Joshua in one of the Classroom environments that ITP offered, with the thought that this would prepare him for Pre-School in the Fall of 2012 (My Church offers a Christian day school and they begin with P-3 for 3-year olds, then P-4, Kindergarten, and so on.)

Joshua had to have another evaluation done (January, 2012) as part of the program. They test every 6 months to determine continued eligibility.

This time it was nice to have most of the testing take place during the home visits which it made much easier on Joshua. Of course his tests showed improvement from the first one, but he was still eligible to receive services based on the program’s standards for child development.

It turned out there was an opening in one of the classrooms, beginning in February, 2012. The classes are small (no more than 4 children per class), with 1 teacher per child. The classrooms also have weekly visits from a Speech Pathologist and Occupational Therapist. The class that had an opening was run by a teacher named MaDonna. And, the class schedule would be Monday through Thursday (10:30a-12p). The classes also ran through the summer months, which was GREAT!

Joshua spent 6 months in MaDonna’s classroom and he just grew by leaps and bounds. He had the schedule down and did great during circle time songs and stories (to my amazement). Although he did not participate often with trying new things at snack time, he would still sit patiently and wait for his friends to finish. They had a similar drop-off situation like St. Paul’s would have. The only difference with ITP is that I would get Joshua out of his car seat, instead of the teachers like at St. Paul’s, but the teachers at ITP would walk him into the school/classroom. I thought this was going to be an upsetting experience of separation at first, but Joshua did great. It was patchy, but way better than what I built it up in my mind to be. He was always happy and enthusiastic to go to “school”. His class was at Point Pleasant Elementary in Glen Burnie.

I was sad that Dena was not the OT assigned to Joshua’s classroom, but we couldn’t have gotten a better teacher in MaDonna. It was just our luck her room had an opening at the time we needed. She was wonderful and Joshua took to her immediately falling into her lap and giggling upon their first meeting at home. During the 6 months Joshua was in ITP School MaDonna would come to my home once a month to discuss Joshua’s progress in the classroom and all his growth. We would also talk about struggles in more detail and we would give each other feedback. Sitting down with MaDonna was like sitting down with my own Mom. She is a warm, kind, gentle woman who loves to laugh and was so tickled by Joshua’s personality and antics. This was a blessing in so many ways, as my Mom’s health was declining all throughout this year and during my journey with Joshua. I felt alone at times. I still do.

I went to a few workshops that the program offered to parents. There was one on sensory processing disorder, and while some of the traits in some of the categories could sorta fit Joshua, he did not fit squarely into any of the categories under SPD. This was also true with the Autism Spectrum. While there were some red flags when we began the program, a lot of those red flags were dissipating as services were obtained. ECI is key to children’s continued positive development. If Joshua were to be formally diagnosed with autism spectrum disorder (ASD), it would be minor and he would certainly be on the high-functioning end of the spectrum. When I began ITP I thought diagnosis was a part of what they offered and since it had not been directly brought up to me or suggested, I was thinking we were on the right path with our current plan of services. It wasn’t until later that I realized ITP did not offer Doctors authorized to give medical diagnosis –however, at one time they did. It was up to me to decide to seek a diagnosis. MaDonna did not encourage it as she saw the tools working so well for Joshua. I was told you can go through so much with testing and appointments with one specialist and you may not even come out with a diagnosis if it’s borderline or just on the fringe like Joshua is.

He is excelling great in many avenues, especially at school, while still having some issues here and there (moreso at home) that are specific to him, but with the continued services, awareness and support, I think we will be ok. But, I must strongly state that I am in no way afraid of a diagnosis. In fact, I would welcome it. I just want to do what is best for Joshua. And, right now, I feel he is on the right path. If he in any way falters or has greater disruptive issues develop in the future, I will certainly do what I need to do for my child.

Once he “graduated” from ITP it was time to prepare for P-3! I couldn’t be happier with his progress at the St. Paul’s Pre-School. His teachers are incredible and he has grown the most this past year. It is unbelievable.

Since ITP ends at age 3, Joshua was tested again to determine if he would be bumped into the next bracket, the Three-to-Five program they call Child Find. After that, it goes into grade school, and then high school. All of these services are free –only eligibility is required by the State.

Joshua was still under the radar on where he should be (but still improving), so we wrote up an Individualized Education Plan for Joshua (IEP). He would have a special educator teacher come out to the pre-school once a week for general observation, and activities. He would have a speech pathologist come out once every other week, and an occupational therapist once a month. All three specialists would coordinate through me with the Teacher to pick a day & time to visit Joshua in the classroom at St. Paul’s. So far all of the feedback I’m receiving is positive and progressive. I will meet with Joshua’s specialists, the Child Find Director and Pre-School Teacher sometime in May to discuss his progress and continued services.

I like all of his specialists, but especially the Speech Pathologist, Mr. Brian. He is great with Joshua and I love his personality and demeanor.

At first Joshua was only attending St. Paul’s 3 days a week (M-W-F, 8-11a), but after parent-teacher conferences, Joshua’s teacher recommended adding the other 2 days of the week due to all the specialists’ visits and sometimes their over-lapping visits. So, we went ahead and signed Joshua up for all 5 days. I was a little nervous at first, but he loves school so much I knew it was the right thing for him. And, he loves it!

I could honestly share a lot more detail than this, but I think this is long enough…

I should mention though, while a year ago we could barely walk into the sanctuary for a Church service, now Joshua can get through a service with relatively little difficulty. He attends Chapel every Wednesday with his class. I feel this has helped him become more familiar with the Church activities. He has occasions where some of the unison speaking can be overwhelming for him, but he can handle it much better now.

I don’t know what the future holds, and I still have some daily challenges with Joshua, but we manage, do the best we can, continue to educate ourselves and live our lives the best we can! We Light it up Blue to show our support for the autism community and the friends we have made along the way, through our personal journey.

Light it up Blue, 2013