Preston was born 4 weeks early and was considered premature, despite his 7 lb 11 oz size. The last trimester of my pregnancy with Preston was very stressful, both physically and emotionally. When I was 36 weeks along, I caught a bad stomach bug and could not keep anything down (including sips of Sprite or water). I ended up in labor due to severe dehydration and Preston made his arrival much earlier than expected. He spent 5 days in the NICU for low glucose and jaundice and then we were able to take him home.
He was born with a hemangioma on his nose (a birthmark that grows rapidly the first year) and because of the location of the hemangioma, we had to follow up with a pediatric ENT monthly for steroid injections to try to keep it from growing too quickly and making it difficult for him to breathe or severely disfiguring his face. He also had to follow up with a urologist right after birth. We saw many specialists the first year of his life, most of which were at Primary Children's Medical Center.
At age 2, Preston still had 0 words (we could think of 5 he had said once or twice, but basically he didn't speak). We had him tested and qualified for early intervention. He started speech therapy in a group setting called "Talk Time." A few months later, he began speaking more and we no longer needed or qualified for talk time. He knew words and his vocabulary was catching up, but his receptive speech was practically non-existent. If you asked him a question, he could not understand what you were asking him. He communicated more in words than sentences, but we were grateful for progress. He also had no self help skills. He struggled to feed himself, wasn't trying to dress himself or help with things like most toddlers, etc. He also didn't know how to play. Thankfully he had a big brother to follow around and imitate, but to come up with ideas on how to play on his own, that just didn't happen. As stressed out as I was wondering what was wrong with my child and what I could do about it, I felt so blessed to have him. He was calm and loving and truly a delight. Although unable to communicate well, he had a way of connecting with others emotionally that I have rarely seen in others.
By age 3, we were back in early intervention (now through the school district instead of the health department) for more testing. It was so frustrating. They got out a test and he just sat there. They could tell he wasn't as low functioning as his testing showed, but he could not take the test. After six different tests, they found one he could do to get a better feel for his level. Instead of asking him questions and asking him to identify something (for example one question was "Can you point to the picture where you watch cartoons?" and there were six pictures on the page and he needed to point to the TV.) He just sat there looking at them. It was painful to watch and wonder why he wasn't getting it. What wasn't clicking with him? But they found a test with just pictures and he could name several of them so they went off of the results for that test. They could tell from that test that he knew plenty of words so they ended up telling me he didn't qualify for special ed preschool despite his obvious lack of self help skills and understanding with his receptive language.
His progress was slow. At age 4, he still couldn't dress himself, help brush his teeth or hair, do buttons, snaps or zippers, and was barely potty trained. But he could ride a bike. It was so strange the way his skills in some area were normal or even ahead and his skills in other areas (particularly fine motor skills and receptive speech) were so far behind. After going to the doctor for his 4 year well check and realizing he couldn't do the balance test (we think he couldn't understand what the doctor was asking, not just that he struggled to balance), we were referred to an occupational therapist. Thankfully they knew what they were doing. He had testing with a speech therapist, occupational therapist and was referred to an audiologist at another location for further testing. This was his third time testing in a sound booth with an audiologist, but he was finally able to perform the test enough for us to get a feel for what was really going on with him. After all was said and done, he had a diagnosis of sensory processing disorder, auditory processing disorder and developmental delays. His fine motor skills were a huge concern so we started occupational therapy. As part of his therapy he had to work on getting dressed, brushing his teeth, and then could go to the gym to work on other "fun" stuff. It was PAINFUL to watch! It took him so long just to try to understand what she was asking him to do, let alone figure out how to physically do it. When we got into the gym the first day after dressing and brushing teeth, the OT told him to go check out the ball pit. It broke my heart (and the OT's) to watch him. Where most kids are wild and running and jumping to try to regulate themselves and get the sensory input they craved, Preston didn't even know what to do. My precious 4 year old boy had no clue what to do in a ball pit. He just stood there looking at us. That was the first time I realized that so much of what he was able to do came from imitating his big brother. Not only did he have a hard time decoding speech (understanding what was being said) he also had a difficult time in the ideation stage of thought (coming up with his own ideas and breaking things down into steps based on seeing the big picture).
Preston's audiologist recommended a program called "The Listening Program." It is classical music that changes volumes at different times in different ears (you wear headphones) to basically stimulate the brain. This was the first therapy where we really noticed improvement in his development. He was flipping through a library book one day during the 10 week program and began telling the story to me. I started sobbing! He was pretending to read. He was telling a story. He was connecting a book with words. It was HUGE!
Because of his new diagnoses, I had him tested for special ed preschool again. He qualified easily, but only after two days of testing (instead of just one like most kids have) and four different tests just to get an idea of his level. Oh how I HATE testing!!
He continued with The Listening Program and special ed preschool while he was 4. One of our neighbors (his church teacher) found out the progress he was making with The Listening Program and told us about a friend of hers who did something similar. It was a program called Sensory Learning, which combines light, sound, and motion therapy. We decided to put Preston (and our other son, Dylan) through Sensory Learning the following January (2012). It was a month program with two half hour sessions per day, but you can often see changes in development up to a full year. Sure enough, he did AMAZING! His communication skills increased dramatically. Not only could he understand and answer questions better, he was now ASKING questions. Not just "Can I have some juice?" but things like "Why do mermaids open their eyes under water?" (It came from playing with all the girl cousins his age, but I was thrilled that he was connecting the dots and wondering about something). The best way I can describe the program is that it increases the synapses in their brain. He was making connections because the right and left hemispheres of his brain were communicating better. There were more neural pathways than before. It was HARD! Every time he would have a major breakthrough in learning or development, his behavior would take a dip. Like big special needs meltdown type of dips. But those were short-lived and when we realized it was always followed by major growth, we were better able to handle the dips.
He made such incredible progress that we ended up putting him through the program again the next year (December 2012) and a third time six months later (June 2013). He has completed the Sensory Learning program (SenTec) three times and made leaps in his development each time.
Although Preston had an IEP, we did not feel like our local elementary school was the right place for Preston to continue his education after preschool. It just didn't feel right. We homeschooled him for Kindergarten and 1st grade and he just started 2nd grade this year. We had a bunch of testing done through the charter school we attend last spring and have a new IEP in place at the charter school. He attends class with his special ed teacher four times a week for 30 minutes a day and then finishes his school day at home with me. It's a lot of driving, but we felt this school and special ed team was the best place for him to receive the extra help he needs academically. We never seem to do things the easy way! ;) We try to do what feels right and follow the direction we feel the Lord wants us to take with our children. Right now it's special ed classes through a charter school.
After we had a diagnosis (or several) in place, I started reading every book I could find on brain development. I've learned a lot! A LOT! One of the books I read was called "Disconnected Kids" and when I finished that, I ordered the follow-up book called "Reconnected Kids." This was probably a year ago. Maybe a year and a half. At that time, I knew the Brain Balance program was something we would need to complete with Preston, but was not sure how or when we would be able to make that happen. After several changes in our family (we were planning on a job change and move, but ended up staying in our current home) we decided it was time to look into the Brain Balance program. I had both Dylan and Preston assessed at the center and after getting the results, we decided to have Dylan do the at-home program and Preston complete six months in the Brain Balance program. You can read more about the program at brainbalanceutah.com It's a HUGE commitment! It requires us to follow a gluten free, dairy free, soy free, peanut free diet. We do at-home exercises three times a day, take supplements, and Preston goes for one hour sessions three times a week in the South Jordan clinic, which including the commute translates to three hours out of my day three times a week. It's intense, but it's what we feel is right at this time and will help him continue on his journey.
I decided to start a blog so I could make note of things I learn, helpful tips for others who may be in the program, changes we notice in Preston, difficult moments, etc. That is the purpose of this blog. Because Dylan is doing the at-home program and our entire family has committed to the dietary changes, this will not only be about Preston, although I suspect the majority of the posts will revolve around him. Thanks for joining us on our journey!
You are the BEST Mother EVER!!! the commitment you have made is just wonderful and it comes for the love of your children! I love ya lots and if I can help out in any way, please let me know!!
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