Tuesday, March 24, 2009

Try This Tuesday-

It just so happens that I speak a lot to parents of newborns with Down syndrome. For a while, I understood that certain people where not happy with this, seeing that I often will mention (amongst all the positive things) certain negative things. But I refuse to be a Pollyanna.
Lots of parents, speaking to “fresh” parents, tend to gloss over the rougher points: Toilet training can take what seems like forever, this is a test that doesn’t fix itself after 6 months, others will act differently towards you. They emphasis the “loving nature” of kids with Down syndrome, the blessings and vision it has brought them.
I hate to say it, but most new parents are not taken in by the “Pollyanna” version of Down syndrome. No one seems to be pounding at heaven’s door:
“G-d, PLEASE , ONLY a child with Down syndrome! I want clarity! I want fulfillment! PLEASE!!!!”
And since this is NOT happening, new parents understand that there IS some sort of challenge here, some major difficulties. What they want, and need is two things:
12. An idea of what they can hope for in this child, what the future holds for them
2. An assurance that their lives, and that of the baby’s siblings, are not irrevocably damaged and ruined.
3. They want to know what they can do NOW.

So first when I go to see a new parent, I try and bring a nice gift for the baby:
1. The first item I bring will be something that implies a certain level of attainment: “tzitzes” (a garment worn by Jewish boys only after they are toilet trained), a book, a counting toy, or the like.
2. The second item is a toy “Porcupine” (I have NO idea what this is called in English): a ball of soft flexible plastic quills (common on key chains), which can be used in skin-stimulating therapy.

And of course the MOST important thing is to come with a warm smile (it is NOT a wake, even if they are crying) and a “Mazal Tov” (“Congratulations”): Let them SEE that life stayed good for you.
Often the way I start is by sharing an album of pictures with Ricki. Now this album does only have nice pictures, but the important thing is that very few of the photos are “portraits”. Most are of her DOING things. One could add in photos of other children as well. But the emphasis must be on the doing: reading a book, feeding a pet, dancing, at the computer, listening to a walkman, etc. This activity is often their first exposure to the abilities of children with Down syndrome, and it is not just YOUR word: they can see for themselves what the child is doing. This often leads straight to questions:
“What, she can read?”
“She has her own camera?”
“What, she’s in a regular classroom?”
“Wow! She made that bead necklace at age 5?!”
“At what age did she get glasses?”
“I see she has a hearing aid? Do all kids with Downs have trouble hearing?”
Then from the questions I slide to my major points:
1. The doctor may have told you that the range of intellectual impairment can be “mild to severe”; what he did not tell you is that 95% of children with Down syndrome fall into the mild-to moderate range on IQ testing, which means that your school-aged child with Down syndrome will (in all probability) be toilet trained, learning to read, able to dress himself, sweep the floor, and set the table.
We have today a tremendous amount of information about the learning profile of children with Down syndrome. We not only know their cognitive problems, but we have been able to develop ways to help them learn more effectively. Today almost all children with Down syndrome can speak, although I admit not always completely clearly, and the very large majority can learn to read as well. They have extra difficulty with math, so today we are using special methods to teach math which capitalize on their (relatively good) visual memory, rather than verbal memory techniques.
2. Today there are many options available to our children: special education, inclusion, etc. They do NOT have to make up their mind today what they want to do. There IS however, a lot of bureaucracy involved, and the need to fight for what is legally coming to your child can sometimes be a real pain in the neck. That is one reason why I recommend that they join our parent group: the power of a group is larger than that of individuals. Also, their neighbor and mother and sister-in-law will not have experience with Down syndrome. So when questions arise (like which eye doctor will treat my child as a child, and not as “Down syndrome”), you are going to need contact with other parents. Other parents will also be able to emphasize with you over problems, and not try to “whitewash” them, as others are likely to do. Also they should keep in mind that they do not have to, today, plan out their child’s future: group home? Private apartment? Married? Single? Their child will be, with their aid and guidance, the determinator of his future.
3. Siblings can be a touchy problem. But if you play your cards well, they will grow and mature from the experience. (And here I share benefits that my kids have seen, as well as some common pitfalls –see HERE for pitfalls….)
4. And finally, I try and show the parent a few things they can do with their child TODAY, as well as information on community resources.

I know that this is a long post. Hope it is helpful for someone.


Anonymous said...

All I can say is kol hacavod! Your support sounds fantastic and those parents are very lucky to have you!

Jenny said...

Wow - these ideas are incredibly helful and well thought out! You must be such a source of assistance and encouragement to those around you! Thanks for sharing!

Anonymous said...

What a blessing you are to these parents, and to us for sharing your ideas. The local group I am in is very big on the message of hope and being able to make a difference in your child's life. It sounds like you are going above and beyond to bring hope to these families.

Anonymous said...

What a wonderful post - you really know how to help others.

TUC said...

Thank you, for the truth and the advice.

Batya said...

I have no doubt that your contribution is priceless.

Lynn EnsMom said...

This is a great post. SO often people just want to help me see the "bright side" of my special needs daughter (she is 11). I already know that side. I need people who can understand that it is hard and somedays I do not have energy - physical or emotional - for anything but surviving.

Thanks for reminding us we don't have to be pollyannas. How refreshing. Live in reality! What a concept!