From our guest blogger, Annie:
When you really think about it, life is just a series of transitions. All living things constantly adapt to their environment and current situation, and we do it for good reason… Without adaptation, we just wouldn’t make it! While change may be scary, it is ultimately inevitable, so like everyone else, I try my best to go with the flow. Sometimes in my special needs family, transition is especially hard. As 2011 comes to a close I’ve begun to reflect on the year, and the huge transition we’ve been making.Alex is now 3.5 years old. For us, what this really means is that 2011 was the year that we went from having a baby/toddler who was just very delayed, to a child with severe disabilities. It was a really tough transition. Before he turned three, Alex was able to just keep using baby equipment. Yes other kids his age had stopped using most of the equipment by then, but at least it still fit, and he was small enough that his differences didn’t seem so big. As he grew though, we realized that we still needed baby stuff like a high chair, crib, body suites, and crib, but none of it really fit him anymore. Now we’ve moved on to adaptive equipment for individuals with disabilities, like a high-low chair for feeding, pediatric wheelchair, and gait-trainer, which was a long hard battle with insurance to say the least!
Equipment obviously wasn’t the only thing to transition through though. Before age 3 children who qualify in the state of Colorado for early intervention services, get all the therapies they need provided for them in their own homes. Alex had physical, occupational, speech, feeding, and behavioral therapy each week until his 3rd birthday, at which point he had to transition to public preschool to get therapies. It was a really hard transition. Alex had so many special needs that the school was actually afraid of him. It made me feel horrible. Upon entering the classroom for the first time, I got to witness my worst nightmare first hand. The lead teacher actually instructed the other children not to look at my son, and then didn’t look at him herself for days. I had to reprimand another adult for the first time in my life, and rattle a lot of cages to get things back on track after that awful incident. It was a rude awakening to see how resistant society really is towards my little guy. After several months of adjusting however, Alex couldn’t be any happier than he is at school. He gets so much benefit from being around other children, and his sweet charm has won over his teachers and staff.
The final transition we’ve had to go through is behavioral. Alex went from a fussy baby, to a violent child seemingly overnight. Most of the time Alex is the kindest child on earth, full of hugs and smiles, but for about 40% of the day Alex head bangs, screams at high intensity, pinches, scratches, kicks, chokes, never sleeps, and rips out hair, all because he can’t communicate, when there’s nothing on earth he wants more. We’ve been working as hard as we can on these issues, and have had some big improvements! Mostly just on my part, as I learn how to do things that don’t occur to me instinctively.
Overall, I think we have made some huge strides this year, and Alex is a happy healthy child. There are several organizations, specialists, and things we couldn’t have made it without. Here’s our list of 2011 THANK YOU THANK YOU THANK YOUs, in no particular order.
- Imagine!. Their Dayspring team for early intervention therapy is THE BEST. Then as Alex got harder and harder to take care of, he was added to another Imagine! Program, the Families Most in Need Fund. This fund has been a lifesaving thing, allowing Alex to access equipment and therapies he couldn’t live without. We couldn’t live without Imagine!.
- Kid’s Mobility Network- When Alex’s insurance dragged there feet for 8 months trying every loophole they could to get out of buying Alex a wheelchair, feeding chair, or gait-trainer, KMN, a small charitable organization, provided him with all three free of charge while we waited for insurance to come through. KMN gave Alex access to his world, and a safe way to eat his meals, something we couldn’t have lived without. Kid’s Mobility touched my heart and I will be a lifelong donor.
- Essential Whites bodysuits- he wore these under his clothes, and they prevented him from public fondling or PICA episodes.
- Parent to Parent network of Colorado- this parent network connected me with ideas, doctors, and specialists. No one knows how to give constructive advice like another special needs parent.
- Dr. Gary Bellus of the Genetics department at Children’s Hospital Colorado. It may have taken him 2 years, but he searched and searched until he gave Alex his final diagnosis: Angelman Syndrome. I am so grateful for that fateful day.
- Coffee- without you sweet coffee, I wouldn’t have made it through the countless sleepless days and nights with my sleepless child.
- My family. A support system is vital to any transition, but my family has been a huge asset to Alex’s success. I honestly wouldn’t have made it without the un-wavering support of my partner Ryan, and sister Virginia.
- Etsy.com- I started my own business this year to help afford Alex’s special diet, and it ended up being very successful! I make items for special needs children, and consequently get to meet special needs parents all the time, and make a small difference in their lives.