The Secrets of Raising A Child with Down Syndrome

10acd39f10f35b1c29170d4I surely don’t cast myself as speaking for all parents of child with Down syndrome or any other disability. But there’s some things about raising them that maybe not everyone knows.

It’s so much more expensive, it’s absurd.
When we dreamed about our new child, we never thought for a second that we would be changing diapers for 6 years. Most “mainstream” children in America are housebroken by age 3. Some much earlier, before their second birthday. So that $200 a month on diapers is no longer a financial burden for most. You’re tagged with it for another 4 years. Do the math please, I’m horrible at it.
Also consider the additional laundry, caused by the near-daily “accidents” that happen while at school or overnight.

Think you can throw your kid in any after-school program or the before-school daycare? Not so fast. Your kid requires a 1-on-1 attendant. That is gonna cost you. Finding an opening for a child who is “different” takes more than running down the list a google search yields. It takes calling people you know who can recommend a place, or person. If your child is non-verbal, (i.e., can’t tell you if someone is behaving badly), you can bet that you will want to pay for quality care when you can’t be home. Or…you can really be nuts, like we are, realize it’s easier to have a parent at home. My husband and I have alternated throughout the years. Truth is though, someone gets their career derailed for a while. The family income is reduced, and you are maybe just gettin’ by at times. Or worse.

Don’t even get me started on medical co-pays. (Oh wait, there’s government programs to help with those? See my next point “The extra time it takes.”) The additional medical bills probably vary greatly from family to family, but can devastate you. Once you fall behind, things have a way of snowballing pretty quick.

Through a community program, our daughter received a beautiful brand new bike last year. It’s adaptive, meaning the pedals, handlebars, seat, etc, are all set-up in such a way to make it easiest for her to master. Wonderful program. (Spin For Kids, in Grand Forks, North Dakota) The bike, cost nearly $900. I cringe a little when I see a flyer for Target with a “mainstream” kids’ bike for under $100.
And yet we are lucky. Our daughter’s additional therapeutic and medical expenses for devices are nothing compared to other families whose precious children face even greater challenges in life.

The extra time it takes
Hope you’re patient. All parents say/think this, right? Ohtheyhavenoidea. Want to plan a special activity? Better start telling them about it a couple days in advance. Our daughter loves to look at the calendar or a visual schedule. That’s because transitioning, (going from one activity to the next) is difficult. I repeat myself so often and have for so many years, I feel challenged carrying on conversations with other adults sometimes. I probably say the same instruction a minimum of 3 different ways to try to find one that resonates. I feign enthusiasm. I exaggerate urgency. I exude anticipation. I scream in my car.

Ever heard of an “I.E.P.”? If not, consider yourself lucky. I.E.P. stands for “Individualized Educational Plan”. Plan on taking time off work to attend these in addition to regular conferences at school. First of all, let me say that I think I.E.P.s are a good thing. No, a great thing.
People who went to school, have had experience, and often times a passion for helping kids with special needs have watched your child, listened to you, and have put together a plan of how to address the special individual challenges, and cause positive change. Many times I’ve been relieved that other people see the same things in her that I do, and saddened by the realization that needing this plan is necessary. You’ll sit in meetings with specialists, therapists, teachers, principals, advocates, social workers, paras, and learn a lot. Hopefully laugh a little. (Or a lot, if you retain your sense of humor). You will sign your name a hundred times. You were there. You know the plan. You are okay with using this plan. As a parent, you should know your rights, and stand-up if you see any shortcomings. We learned this firsthand while living in Montana, in a city that has policies to this day that violate the Americans with Disabilities Act. We fought, and won for our child, but nothing changed system-wide for any other kids.

More time is spent try to take advantage of programs that are supposed to help your situation; the county or state programs vary widely depending on where you live. The only common denominator I’ve found is that filling out the bullshit paperwork and interviewing and talking on the phone is a full time job for about 2 to 5 months each year. I’m not even exaggerating, based on our experience. You can’t go to your job and sit on the phone with human services for an hour and a half while you’re on the clock. Also, you’ll spend many evenings completing the paperwork. Oh, and hunting down social security numbers and birth certificates and past I.E.P.s and medical records and bills, and paycheck stubs, and tax returns, and list of contacts, references, and medical practitioners. Some of these will need a notary. Or certification of some sort. Have fun.

Finding a place to play, a playgroup, a family activity, all take longer because your options may be limited. We can’t take our daughter to a movie, for example, because it would not be something she’d tolerate. She can’t sit still for 2 hours, and the light/sound stimulation would prove overwhelming. We tried. It doesn’t work. It’s too expensive to keep trying, so we’ll wait until she shows us she’s ready in other ways. I’m totally okay with that! We’ll just have to stick to the things that do work for her. We’ll go to the pool clear across town. Or the playground 2 towns over. We’ll spend extra time finding whatever works for us.

You are thrown into the role of rabid advocate.
Suddenly you want to scream at people who want to cut special education funding. You are overjoyed and tell people whenever you hear about a spectacular feat by a person with disabilities in the news. You join facebook groups with other parents in the same, special club. You resist the urge to punch mouths that say something is “retarded”.

You’ll tell anyone who will listen about all the ways your child is the same. You’ll argue to lessen the differences.

You might lose friends over this. Balance, my friend.

The Milestones come so hard.
Walking, a year long wait. Riding a bike, 3 year wait. Using a toilet, a 4 year wait.
All those insignificant things that happen to “mainstream” kids at an appointed time become I.E.P. goals and therapy exercises for you. And yes, it is even sweeter and soul-affecting for us.

You’re not a superhero. You are just a person. A person who faces extra challenges. Your challenges pale in comparison to your child’s. Maybe you’re not supposed to be hung up on teaching them things. Maybe you should focus on learning things.


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