Down Syndrome Inclusion and Age
I had no idea of the amount of advocacy and work that most special needs parents faced when it comes to the inclusion of their children into mainstream society. I was one of the blissfully ignorant parents of typical children who never had to consider such things. However, the last 2 years have shown me just how much advocating goes into being a special needs parent. The advocating never stops from teaching society about our children, to advocating for their medical tests and needs to figuring out this whole special needs education arena. However, there is one thing that I am at stark odds with and I am the minority in the majority of my special needs parenting peers. In considering inclusion and age, I feel that chronological age does not necesitate age based inclusion. Down Syndrome inclusion and age, let me explain…
My son is now approaching the age when most parents are considering preschool. In the state I reside in (as in most of the 50 states) there is a state based early intervention program that ceases at age 3 years old and transitions children over into the school districts to attend preschool and resume services (physical, occupational and speech therapies) as well as to begin educational services.
Children with Down Syndrome have delays, that is no surprise. They are also usually significantly physically smaller than their typical peers and their growth both developmentally and physically is significantly slower than those in the general population.
So, what am I getting at here? Though I know that most parents would be shouting from the rooftops that age based inclusion needs to be fully incorporated from the earliest age, I wholeheartedly DISAGREE. My son at almost preschool
I feel my child with special needs is better served by being in an inclusive environment based on his developmental age, not his chronological age.
The argument I have heard is that if children who are developmentally delayed are placed with children who are developmentally their level they will not strive to meet the levels of development that are age appropriate. Guess what… my child is not going to meet the developmental levels at the same pace as his typical peers, that is part of what makes Down Syndrome a condition. My son has been around
For example, Cedar is not a fan of crawling, in fact, he hates it. We work on 4 point crawling weekly in physical therapy but he would much prefer his own version of scooting around on his bum than crawling on all fours. Now, developmentally that is a skill mastered by the time a child is less than 1 year old. Children my son’s chronological age have usually mastered walking, jumping, and sometimes even skipping. To put my child in a room full of peers of his own age when he cannot yet walk puts him at a serious disadvantage. On the flipside, to put him in a room full of developmental peers who are crawling, standing, cruising and starting to walk has caused his little wheels to turn and I have seen him attempting to emulate the physical behaviors he is seeing.
I imagine that this will go on with each developmental milestone. I believe that it would set my child up for failure if I pushed to have him included in a chronological age classroom of peers based on his birthday. I also feel that having him sequestered in a special needs classroom would not serve him well either. Our choice has been to homeschool our children, and this choice will remain with Cedar, but even in other arenas, church, clubs, recreational activities, etc. I feel my child is better served to remove the “age” basis for peers and just to put him in a position where he is surrounded by children of varying abilities, but who are closer to where he is developmentally.
Related Post: Homeschooling a child with Down Syndrome
I had a chat with our occupational therapist about just this topic, she actually served in the public school system for years and she stated that she fully agreed with my line of thinking. If my child were going to a school, I would want him placed a grade or so behind, in fact, I wouldn’t even think of preschool until he was probably 4-5 years old. The interesting thing is that most children who have Down Syndrome are physically smaller than their peers so unless everyone was continually checking out the birthdate and year…no one would really be the wiser.
So, for what it is worth…I disagree with the idea that inclusion has to be based on the year a child is born. Inclusion is what we will practice for our entire lives, being included in our community, our place of worship, and our educational choices but this does not need to be dictated by the year we are born.
Top 5 Speech Therapy tips for Children with Down Syndrome
The Speech Teacher’s Top 5 tips for Children with Down Syndrome
When you have a child with Down Syndrome, you become very familiar with Early Intervention, Physical Therapy, Occupational therapy, and for some the most important, Speech Therapy. I came across Molly from the Speech Teacher on social media and being that I am still learning so much about how to help my son reach his full potential, I asked her to share some sage advice with us all.
“I’m So Proud” A Word about our Children with Down Syndrome
Our children who come out made by designer hands and rockin’ designer genes take us on a tour of the world they are in. Their muscles are not as strong as other babies, they often have heart problems, they can have difficulties as a result of smaller nasal passages and ear canals, floppier tracheas, gut and bowel issues, truthfully the list can go on and on depending on the child.
It can take significantly longer for our children to hold up their heads, babble and coo, crawl, walk, talk, read, write, and the list again can go on and on.
What Can You Do to Help Your Child with Down syndrome Walk
What can you do to help your child with Down Syndrome walk?
Children with Down syndrome typically walk later than their typical peers. Though this is true, there are some children with Down syndrome who seem to have no delays in their gross motor skills and yet others who, like my Cedar, seem to be in no rush to cruise or walk solo. What is a mom to do and what can you do to help your child with Down Syndrome walk?
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Make sure you have a good therapist
First and foremost make sure you have a good physical therapist who works well with your child and with your family. Know that sometimes just because someone happens to hold a degree does not necessarily make them a good fit for your child, so trust your gut. Ask your child’s physical therapist to show you exercises you can do with your child on the days you are not in therapy. If you are only getting statewide free therapy through an early intervention program and you feel your child needs more, simply start asking around and seek out services. I have found that being an advocate for your child is absolutely a requirement when your child has special needs.
2. Set up a therapy schedule.
I don’t mean the days that you go to therapy but the days where you intentionally spend time outside of therapy working with your child at home. Incorporate therapy into play when possible and always make it fun. Scour the internet for ideas and do things like have your child pull to stand and utilize push toys to help them get moving.
3. Ask about orthotics
This is one that you may have to push for if your therapist is a little lax about recommending orthotics. It seems as though most children with hypotonia (which is common with Down syndrome) benefit greatly from being fitted for orthotics be it AFO’s or SMO’s. If you notice that your child’s ankles turn in or out when bearing weight on feet, your child locks his or her knees trying to keep balance or your child rocks back on heels while trying to bear weight, your child may benefit from orthotics. We have seen a great improvement in Cedar’s ability to stand for extended periods of time and his cruising when he is wearing his AFOs that we got from Surestep.
Related Post: What are AFO’s and SMO’s?
4. Keep working at it
Though it seems like sometimes all your hard work is in vain, sometimes our little ones surprise us out of the blue by doing something unexpected that we have been encouraging them to do and then one day…they just do it. Tune in to your child, see what motivates them. For us, once we finally got Cedar some AFO’s (ankle foot orthotics) we saw marked improvement in his endurance and desire to move. We also found the EUREKA moment that we could entice him to cruise around our coffee table if he was chasing after mom’s cell phone or some popcorn (hey, whatever works, right?)
5. Don’t beat yourself up
Just because you see another child who has Down Syndrome walking at 12 months doesn’t mean there is anything bad if yours is 24 months and still not walking. Unless there is some other underlying medical condtion besides Down Syndrome, I have yet to see a child with Down Syndrome not eventually walk, yours will too.
Related Post: How do you get your child orthotics?
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