Down With It: Modifying Life For My Daughter

There are so many things you prepare for as an expectant parent. In fact, these days you can sign up for something called a baby registry that you yourself design and that people spend money on to make these necessities (and wants) a reality for you and yours. There are diaper genies, Dr. Brown’s bottles, nursery mobiles, and everything else under the sun to make a baby welcome in this world, or to make your life as a parent that much easier. But nobody, and no registry, prepares you for having a child with Down syndrome.

I talked about my daughter Madeline in Breaking it Down: My Special Daughter, and how shocked we were as parents even when we initially suspected shortly after her birth that she had Down syndrome. She has continued to surprise us as she has grown from a little ball of joy into a big girl at 4 1/2 years old now. Some days I honestly don’t know where the time went, and on others I wonder why it hasn’t gone fast enough.

We had a meeting in the spring with a team at our school district to discuss Madeline’s progress and to come up with a plan to help her continue to progress in her learning. These were points we were concerned about:

* Language – This is the single biggest issue we have noticed when it comes to our daughter, the difficulty of verbal expressive language. She obviously understands so much more than she can express, and that is frustrating for both her and for us, as her parents. It tears my heart out every single time she can’t tell us in language we understand what she wants or needs. Luckily for us, we have her sister, who is as good an interpreter as we could hope to find.

* Social skills – Madeline definitely likes spending time with other children, but largely because of her lack of verbal skills she tends to be quite physical when around other children. When she wants something she usually will snatch instead of asking nicely. Or when she wants to play with a peer, she will push or tug on him/her instead of saying please or using a verbal request. Of course these forms of communication tend to alienate instead of to draw in.

* Potty training – This definitely rivals language for top spot at home, but plays a slightly lesser role in the school environment. Madeline possesses the skills to hold herself until she gets on the toilet, but she sometimes forgets to hold it, or she will say she has to pee when she has already gone in her pants. It’s tough, too, when other kids her age are going to the bathroom by themselves and self-regulating.

But the point of the meeting wasn’t to discuss the issues, however. It was to talk about how the school system was going to work with therapists, and others, to see that modifications were put in place and updated to address those issues and to help Madeline overcome them. Now, I had heard and read about some horror stories, of families with kids who had Down syndrome who were not blessed with a structural guideline and the assistance and help that we have had being in our school district. Even with the support, though, it isn’t just about now, but about the future. And who knows what the future holds for the school district, for their special education funding, and for Madeline herself?

That’s the major problem, and every agency agrees with that assessment. With funding being cut for everything from academic extra-curricular programs, to sports teams, to arts and music, it’s only proactive and smart to look into how our child can still receive the benefits that are definitely helping her to become the best she can be, in the setting that is best for her, with the experts that help her to achieve great milestones.

And these programs, these therapists, are making a marked difference for Madeline. Her language has grown by leaps and bounds working with a speech therapist individually and in small groups at school. Having that regular interaction with the speech therapist and with other kids who have similar speech delays and difficulties helps Maddie to advance and progress. I can understand her a lot more now than I could before, and to see her little face light up and hear her say “Yes!” when I’ve translated something she said properly just melts my heart.

Similar help with the social skills issue has also aided her progression in that way. Helping her to, in the absence of adequate language skills, use non-verbal cues and initiations (body language is so important in everyone) instead of pushing, pulling, or hitting, has enabled her to feel more secure playing with others. Emphasis also on taking turns and sharing, and adequate modeling in the whole group and small group situations also helps in this regard.

Potty training is our war, and the series of battles is fought every single day, but we have gone to Madeline using mostly regular underwear with plastic “covers” instead of pull-ups in an effort to get her to let us know before she’s gone that she has to go. And some days are better than others, but the most amazing part of the process is that the teachers at her school are willing to go along with us on this ride, to help us “in the trenches,” by letting her wear the regular underwear and covers to school. So, even when she has accidents, it’s still helping to reinforce both at school and at home. And that’s all that we can ask.

Now, I know that funding is not solid. We both know as Madeline’s parents that we have to fight for every single modification and assistance that our daughter gets, but we’ve had time to process what that means, and we have been fighting all along. We will continue to do so for the rest of her life. What we can’t wrap our brains around are the millions of people out there who are screaming for schools to cut funding for special education. Kids like Madeline, who have diagnosed specialties (I like that word), and even those who aren’t diagnosed but need that extra help, should be given that help. People yell about fairness, and that’s the only way I can see anything being fair.

I imagine it like this: I’m 6’5″. If all the money in the world was at a height of 7’0″, and there were no ladders, wouldn’t I want to invent one so others could get up there and get some too? Or would I hand some down to those who were below me? I would certainly not be thinking, “Cool, I’m keeping all of this for myself because I was lucky enough to be born tall.” We should make and support those modifications because they help those who can’t get there by themselves.

And I’m proud to say that today Madeline didn’t have any accidents. It’s a link in the chain. And I can’t help smiling.

Sam