Sunday, March 13, 2011


Being a parent is all about being flexible, trusting your gut, and being persistent. When one thing isn't working, you try something else, and you keep trying until you find what works. When you have a setback, you adapt.

My sister (who had her adorable baby this week!), has just gotten her first taste of this.

Luke on his birthday!
She's been trying to establish breast feeding (oh what fun that was...), and, like most new moms I've known, she's hit some bumps in the road. She and her husband have already had to endure the minefield of various and conflicting professional opinions; all while trying to get a few minutes of sleep, and tamping down the flood of post-baby emotions. When she called for my opinion, I suggested some alternatives, but - most important - I told her to go with her gut, be flexible, and try not to let setbacks deter her.

This is something I am continuing to learn the hard way.

Simon needs extra help and adaptations with basic skills and participation in most activities. Special doctors, special education, therapy, and small/private classes with specially trained instructors for extra-curricular activities are just some of the ways we've found to help him grow, learn and attain a better quality of life. In addition, we're finding that sometimes he requires adaptive toys and equipment. We're also finding that as soon as the tag "special needs" is applied to a product or service, the cost often goes up exponentially.

As the parent of a "special needs" child, it isn't surprising that I need extra flexibility and reserves of confidence. I have found that, although some days we have to dig pretty deep to find that well of patience and determination, it is there. What I haven't yet found is an endless well of cash.

We are lucky that we do have resources. We have good school services, good insurance, and we are both working. And I understand why private lessons, small classes and specialists of any ilk cost more than "average" services, and I don't complain when we have to pay deductibles and/or out of pocket for a lot of things. However, there are many things that insurance doesn't cover -- like tricycles, umbrella strollers, most technology assists, high chairs, and therapy toys. Which is fine, because all parents pay for toys and gear. I just don't think that it should cost the parents of a child needing a little extra help several times more the cash.

For example, I don't see why a slightly larger folding umbrella stroller starts at $699 :

MacLaren Major Special Needs Stoller ($849)

Or, why a larger tricycle with a seat belt and foot straps costs $1,125:

Rifton Tricycle - small ($1,125)
I don't know about you, but to me this seems like a total "gotcha."

But -- they don't have me just yet.

Currently, Simon is still pretty small for his age, and we've been able to use larger versions of regular strollers (jogging strollers can hold a pretty high capacity), potty seats, and toddler chairs, to help him sit correctly and endure longer outings. But he's growing, and though I'm optimistic that he will eventually outgrow the need for many special assists (because he is extraordinarily adaptive), I know that he will continue to need some of them.

So I've got to be creative, and flexible. This spring, I will attempt to "adapt" a radio flyer trike with the help of a box of extra large velcro. I'm currently ebaying for a deal on that larger umbrella stroller. This past week, when our therapist recommended we buy vibrating oral-motor stimulators to see if they helped with Simon's drooling and need to put everything in his mouth:

Jigglers ($26.95 for a set of 2)

I thought about what the goal was (oral vibration and chewing) and opted for this instead:
Infantino Vibrating Grape Teether ($8.95)

Which I found in the baby section at Target, no shipping necessary (bonus!).

These swaps may seem like no big deal, but the little things really do add up. I've read that the divorce rate for parents of special needs children is as high as 70%. When marriage counselors are asked what the leading causes of divorce are, they site stress over illness and/or finances. From this vantage point I can easily see how one thing leads to another, especially in the form of unavoidable medical and therapy bills, and overall uncertainty for the future. There is a clear impact on time, relationships, and everyday life. 

I can see it, but I also see another road. If together we can keep trying to follow the wash/rinse/repeat mantra of flexibility, confidence, and, instead of sweating the small stuff finding alternate solutions, maybe the "big stuff" will have less of an impact when it hits. Which it has, and will again. At that time, as a family, I am confident that we will adapt.

No comments:

Post a Comment