I was looking through some old journals recently, and came across this entry at the beginning of my life as a special needs parent. When I wrote it my youngest had just turned a year old. He is now is now 6 1/2. It was a stressful year, as he had some health problems that we had to solve. We worked hard to find doctors who would listen to us. And if dealing with a colicky infant wasn’t enough, at the same time we were beginning to see delays in the middle child’s development which would lead to him being diagnosed as Autistic.
It was a year full of appointments. I share this snapshot of being in the thick of the transition to special needs parent. My expectations of what our life would be and what my kids could do needed to change. I had to accept the challenges of our reality. Since then I have devoted myself to research and learning about the challenges that at this time we were just starting to encounter. We have made a pretty good normal for ourselves over the last 5 years. It’s taken some time and I’m still caught off guard on occasion. Fun family activities that others take for granted, like going to the movies, are often not an option for our family.
1/26/14 Dear Diary
Last year we added our third child to the family and I had a plan on how life would go. I would teach preschool at home to my two budding geniuses, who would be eager to learn. We would go on field trips to the science center, and story-time at the library. The baby would be content in my lap. While brother and sister sitting nicely next to me listening well and participating. This wasn’t what happened.
We spent the first half of the year surviving at home with a baby who when awake was screaming, and the older ones watching hours of PBSkids. Now we know that the baby has milk and soy allergies, and pancreas enzyme deficiency that was causing him to not gain weight and what he ate was painful to him.
When the baby wasn’t screaming, we start noticing the soon to be 3 year old, still wouldn’t still still to color, was still uninterested in dressing himself, and needed a bib for any mildly messy meal including yogurt. The first few specialists told us to take away his favorite toys, provide less time on the iPad and he would grow out of it. After visiting 2 pediatricians and 3 specialists, he was diagnosed with Developmental Delays, Sensory Processing Disorder and Low Muscle Tone. The 3 year old began 2x a week Occupational Therapy, which means hours every week of driving and sitting in the waiting room with his siblings, leaving little time at home and no energy for mom to do any organized teaching I had planned.
The Big Sister
The 4 year old went to Pre-K for the fall semester which was more excitement. At home she was the easy one and such a big help with her little brothers. The short school day and drop-offs and pick ups added more to the daily schedule of doctor and therapy appointments. The Sensory Processing Disorder her brother has shows up with a meltdown when we unloaded the car to walk her into class each day and at the end of the day to walk in and pick her up. I just couldn’t do it any longer.
Changes for this winter
My life is looking a little different now. I’m homeschooling the now 5 year old because its too stressful to leave the house with all 3 kids on a schedule every day. The 3 year old still hasn’t mastered a spoon, watches and repeats his favorite movie lines over and over, and jumps on the couch so much he got 2 trampolines for Christmas. He still carries his blanket around and, if you don’t have it with you, be ready for meltdown. My baby is now a toddler and starting to do some things my 3 year old struggles with.
The 3, 5 year olds are less than 2 years apart, I imagined homeschooling them mostly together at the same level, with small differences. the 5 year old excitedly read her first (leveled reader) chapter book this month, and can do simple addition on her hands. The 3 year old is still learning to hold a crayon and draw a line.
It’s not the life I pictured, but I feel a great responsibility to care for my boys and their special gifts. I am a researcher and Google is my friend. At a recent meeting I was even asked if I had an education background for the knowledge I appeared to have. I will fight for my kids to succeed and get the help and tools they need. I wasn’t planning on being a special needs parent, who really does? It is hard work but i’m willing and able.
There is hope
Being a special needs parent can be very isolating. When all this was happening, most of my friends couldn’t relate. Yet our challenges greatly affected how and when we could interact with them. I hadn’t yet met new friends who understood. One reason I share our stories is so that others can find it and know they are not alone. It’s hard, it can be painful, and it’s unique for every family. Take heart that the hard will get easier, your kids will grow and change in their own time. I love social media for the easy way I can connect with other special needs parents. I can meet families with similar challenges without the stress and hassle of leaving home. Come join us on Facebook and share your story for others to find hope!