(Hmm...what should I play with next?)
It took many months for me to acknowledge and adjust to the fact that I was a special needs parent. The grief was something I just had to let myself feel for a while. Now, two years into it, special needs parenting has become an important part of my identity and I appreciate the richness it gives to my life, though of course I still wish this hadn't happened to my baby.My son has had slightly low tone and hemiparesis (weakness on one side) from birth. By the age of four months, it was apparent that he would experience global developmental delays--he did not reach for a toy until he was on the ketogenic diet at seven months old, and he did not sit up or roll over consistently until after his surgery--well over age 1. Now that he is seizure free his development is skyrocketing, but he has had and will continue to have a long road of therapy to try to make up for lost time.
Here are some things that helped my son--most of these have also helped friends whose children have similar delays:
LeapFrog Spin & Sing Alphabet Zoo
Pro: Very easy to activate. Even the slightest touch spins the wheel and gives the child lots of feedback. This was the first toy John ever reached out to play with, and it remains his all-time favorite.
Con: The songs are annoying at first, but it's worth it and you quickly get used to them.
Note: These are very expensive on Amazon.com, and I'm not sure why--you can get them very cheap (under $15) at WalMart.
Red beads
Pro: Children with visual and motor impairments like the bright, shiny color and the ease of grasping. When John was a baby and had cortical visual impairment, he would still track the red beads all around. Red beads were a trick our Early Intervention teacher taught us, and they work!
Con: Do not leave your child alone with beads--they are a choking and strangling hazard.
Note: You can buy these at party stores.
Wingbo
Pro: Children with low tone or who hate tummy time may find tummy time easier and more enjoyable in the Wingbo. As a baby my son could barely hold his head up in tummy time and hated every second of it, but in the Wingbo he could stay prone for up to a half an hour. These are from Europe originally and most therapists in the U.S. have never seen them, but every one I have showed ours to loves it! My sister-in-law's child developed positional plagiocephaly from lying in one position all the time, so she put her later babies in the Wingbo instead of on the floor to play.
Con: The $220 price tag. For us, it was worth it.
My Car
Pro: This book has big, bright, simple pictures that are interesting and attractive to children, especially those with visual impairments. It was one of the first books my son really responded to.
Con: As an adult, I find this book inane and the pictures look like they were drawn in Windows Paint, but it's a winner for my son.
Mylar Balloons
Pro: A red mylar balloon taught John to use his hands when he was about 6 months old. We tied it to his wrist, and he soon learned that he could move the balloon by moving his hand. He loved to watch the shiny bright color float over his head.
Con: Do not leave your child alone with a balloon--it is a choking and strangling hazard.
ACQUIREc Therapy (Pediatric Constraint Induced Therapy)
Pro: A dramatically successful program to treat hemiparesis/hemiplegia (weakness or paralysis on one side of the body), based on modern neuroscience research and our understanding of how the brain learns and adapts. The child's good arm is placed in a cast, and then fabulous occupational therapists come to your house for six hours every day for a month to help the child learn to use the weak arm. I can't express my love for this program or the appreciation I feel for the therapists who changed my son's life by giving him two hands instead of one.
Con: The $15,000 price tag, often not covered by insurance. You also must travel to Birmingham, Alabama and rent a short-term furnished apartment for the month of therapy. It is also hard to see your child go through the frustration of learning new skills, but of course it is worth it!
TheraTogs
Pro: My son has noticeable improvements in muscle tone, balance, and coordination when he wears his TheraTogs. If he goes for a few days without them, he is noticeably floppier. TheraTogs are superior to other compression suits because they allow infinite strapping applications to suit your child's particular needs.
Con: You must work with a therapist who has been trained in TheraTogs--don't try this without your PT or OT's help! The Togs come with a training DVD for clinicians. Also, there is a steep learning curve with TheraTogs--they are very complicated to put on, and the first time I tried it I ended in tears. But you learn!
www.notube.at
Pro: A successful, relatively inexpensive, non-threatening way to wean children off of feeding tubes. Within two months, my son was completely off the feeding tube.
Con: The doctors are at a children's hospital in Austria and only correspond with you by email. Also, your child will inevitably lose weight, but this is true of every program I know of--in order to eat, children need to experience hunger. They won't let your child lose too much.
Cranial Remolding Orthoses (Plagiocephaly, i.e. "flat head," helmet)
Pro: It works. Because of John's motor delays, he spent more time on his back than a typically developing child, so he developed a head that was lopsided and flat in the back. By the time it became egregious enough to see a doctor and get a prescription for a helmet, John was 10 months old, and everyone told us he was probably too old for it to help much. Were they ever wrong! John became the poster child for successful cranial remolding (which is actually a misnomer--the helmets don't remold the head, they just allow the head to grow into a more normal shape as the child grows). Within a few weeks of wearing the helmet, his head was noticeably rounder. Within a few months, his head shape looked normal. His head got very flat in the back again after his surgery, so he got a new helmet when he was 15 months old, and once again there was quick and dramatic improvement despite predictions that it wouldn't help and despite the fact that we only put it on him at night and during nap time. His head is now perfectly round. The helmet is also a great crash helmet--he wears it when he rides his little bike, and it keeps him from hurting his head on the sides of the crib when he's tumbling around in there after bedtime.
Con: If your child wears it in public, strangers who have never seen these before will ask you when the poor child had brain surgery. The funny thing was that the second time around, John actually had had brain surgery, so I didn't have to explain the whole cranial remolding process. More often than not, though, people who commented just wanted to tell us that they knew someone whose baby had had a helmet like that, too.
EuroPeds Intensive Pediatric Physical Therapy (Pontiac, MI)
This is where John learned to walk! I can't recommend it highly enough for children with any kind of gross motor delays.
STAR Center (Greenwood Village, CO)
Families dealing with Sensory Processing/Sensory Integration disorders will find help and understanding here.
Post a comment letting me know if there is another fabulous product or program out there that has helped your child!
