I recently read a post on somebody's blog about their child not making friends at (private) preschool, and not getting invited to birthday parties. (Sorry! I can't remember who it was, or how I got there--it was my first visit, I can't find it again, and I don't think the author is a reader here either. It might remain a mystery.)
This is probably every parent's nightmare. I know I worried about it when Hannah was little. Would she be liked for who she was? Would she find people with whom she could build meaningful relationships? I wasn't that worried about it--it was a concern, but not the foremost in my mind. I guess that by already having withdrawn from some mainstream societal rituals by choosing to homeschool our children, I wasn't that "hung up" about what most people call "socialization". At the same time, I knew I'd do my best to encourage and facilitate Hannah's friendships.
Part of proactively encouraging friendships is taking initiative. I made the decision to have a play date each week, inviting one child (and Mom or Dad) from Hannah's class each week. I wanted Hannah to have some one-on-one time with each child so she could learn their names and interact on her own turf. I think I only made it through half of the class before I lost my pace, but by then, Hannah (and I) were getting reciprocal invitations.
I think another part of the reason Hannah was easily accepted was that I wasn't afraid to bring up The Diagnosis. In the beginning, when Hannah was a baby, it was difficult to mention Down syndrome. There were lots of awkward times when I wasn't sure if someone already "knew"--I'm sure it was more awkward for them than me. Then I discovered that I could casually mention Down syndrome in response to an acquaintance's compliment about Hannah (with babies, everyone wants to know how big they were when they were born, or if they sleep through the night, etc). I'd answer with something like, "She was my biggest baby at 8lbs 8 oz, which is unusual for a baby with Down syndrome." Or, "Yes, she is pretty flexible! Babies with Down syndrome have low muscle tone." Honestly, I tried not to share my new passion for all things Trisomic with people who weren't interested, but some times people really needed an outlet for their curiousity. Hannah does not have many of the common facial features of T21. While I think Down syndrome is plain as the eyes in her head and tongue in her mouth, people who aren't familiar with Down syndrome don't always recognize it. ("Does she have just a little case of Down syndrome?" "Yes! That extra 21st chromosome is very little, but it really is in every cell in her body.")(Really, I only ever said that once to someone--it was to a nurse in a pediatrician's office!)
Get on with the point here Beth!
Over the years, I have heard from many parents who are looking for ways to break the ice with classmates and their families. Some way of "educating" them, but at the same time not lecturing.
Here is a letter I wrote to the families of Hannah's classmates when she started her second year of preschool. (Well, I plagiarized some of it from my friend Mitzi. You have my permission to plagiarize it too, if you want. Just change the names to protect the innocent.)
Dear Open Door Parents, September 2002
As we begin this year we would like to take the opportunity to give you a special introduction to our daughter Hannah who is in the four day four-year old class. This is Hannah’s second year as an Open Door student, and she loves her school dearly. As you know, Hannah was born with Down syndrome, which makes some of her developmental milestones a bit "different" than most typical children. As parents of a child with special needs, we have learned so much about the endless possibilities that these children possess. It’s often a matter of looking at what they "can" do as opposed to what they "can’t" do and finding ways to build new dreams together.
As the school year progresses, the children will grow so fast and become much more aware of the world around them. As they enter this new phase in their development, some children may begin noticing some differences concerning Hannah. Some children will never notice any differences in Hannah. They see and accept her as just Hannah. Some will have questions or misunderstandings. Some will be curious and want to know everything. We would like to take this opportunity to share some things about Hannah and a few facts about Down syndrome in the event your little one might ask you questions or share any ideas that they may be forming about Hannah. Sharing accurate information with your children will help them to understand and embrace children and people that have special needs.
Initially, many children have questions about Hannah’s ability to communicate. She does have delays in her expressive language. What this means to other children is that Hannah doesn’t have as many words as they do, so it’s harder for her to answer them or tell them what she wants to play. She needs a little more time than they might to understand a request or instruction. She sometimes gets frustrated because she can’t explain what she wants to say or how she feels. She has special speech teachers that help her learn to speak more clearly, and she works very hard every day to get better and better at talking.
Hannah also has difficulty doing some physical things like running or climbing. People with Down syndrome have hypotonia, or low muscle tone. Hannah’s muscles aren’t as strong or hard as other children’s. It makes it difficult for her to move quickly. We usually tell children who ask about her ankle/foot braces that her feet have loose muscles and the braces help hold her feet steady inside her shoes. Having loose muscles like this is another reason it’s hard for Hannah to speak. It also slows down her potty training since she has decreased sensory awareness through her muscles.
Hannah is very proud of the large scar on her chest from her heart surgery when she was two. She loves to play doctor and hospital since she has spent so much time in these settings. Her heart surgery was to repair two holes and two malformed valves. We explain to young children who ask that the heart has four separate parts, two have the old blood that needs to be sent to the lungs to get new air, and two have the fresh blood that just came from the lungs. Hannah had leaks between the old and fresh parts, so the doctor had to patch them up.
Hannah wears glasses. This is not so unusual to most children now that they are getting older, but when Hannah was a baby and had glasses, many kids asked about them. Hannah has glasses for the same reason anyone else has them, to help her see better. She does have some specific medical issues with her eyes, but these are not relevant to children.
When a child puts all this information together over time, the inevitable question is "Why does Hannah have all these things?" If your child gets to this point, it may be time to teach them about Down syndrome. Here are some questions your child might come up with, and some possible answers you might want to give.
What is Down syndrome?
Children born with Down syndrome have one extra chromosome in some or all of their cells. The chromosomes contain directions that tell your body how to grow. When a child has an extra chromosome it mixes up her body’s directions a little. That is why these children may look a little different (like usually being shorter than most kids, or have eyes that look a little different) and have to try harder to learn. (Hannah doesn’t really have a classic Down syndrome appearance, so children who know her won’t necessarily be able to recognize these physical traits that are common in the Down syndrome population.)
Will Hannah always have Down syndrome?
Yes, it is something she will never outgrow.
Will she be able to do things like me?
Yes, she will be able to do everything like you do, it may just take her a little longer to learn than most kids. She will learn to talk more clearly too, it’s just that learning to talk is often very hard, but just like anything, with a lot of hard work and practice she will get better over time. Hannah also can do things you might not be able to do yet, like read or use sign language.
Is Hannah sad that she has Down syndrome?
No, right now Hannah is happy to be a growing little girl. She feels successful in her life; she loves to learn new things, just like you and me. You’re fortunate to be growing up in a world where people understand that everyone is unique but that we all enjoy and want the same things, like having loving families and friends, going to school, and being accepted for who we are.
The main idea to express to your curious child would be that Hannah is more "alike" than "different". And that she can learn to do all the things that other kids do, it may just take her a little longer.
There are a couple of books that you may enjoy reading to your child that we would recommend -- "We’ll Paint the Octopus Red" by Stephanie Stuve-Bodeen and "What’s Wrong with Timmy?" by Maria Shriver. We would be happy to lend our copy to you. We are also always open to talking about any concerns or questions you may have. Please feel free to come to us if you’d like to discuss any issues regarding Hannah.
We believe that it takes a village to raise strong, happy, enlightened children that create the foundation for a better future. We thank you for your friendship and support at Open Door. It is such a wonderful nurturing place for all of our children!
Beth and James
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The remarkable thing about this letter was the response I got. Every single parent came up to me. Each one had either a positive comment or an honest question. All were encouraging and caring. It was a really good experience for everyone. I had never felt more welcomed.
Full Disclosure: I don't like "We'll Paint the Octopus Red" nor "What's Wrong with Timmy?". I've never owned them. I figured if someone wanted to borrow one of the books I'd snatch Mitzi's. But nobody ever did. Good for them. And that last paragraph is so sappy it makes me kinda want to vomit. End of Full Disclosure.
I'd also like to mention that by now, I am well beyond caring if anyone knows or doesn't know Hannah has Down syndrome. If they can't figure it out by now, well, umm, oh well. Even though I live and breathe Down syndrome, it means so little to me at this point. Hannah is just Hannah. She does have friends who like her for who she is. She does go to birthday parties. She does have meaningful relationships.
12 comments:
I don't think I've ever seen your blog before! My daughter Ricki (who has DS+ADHD) is 14. I am also a DS-coholic. My daughter is in a regular classroom, but I have to do the adaptations, so I do a lot of the things that a home-schooling mom might.
Nice Blog.
Great post! The post you were talking about was from Beth at Not That You Asked. Thanks for posting this!r
Brilliant!!
:-) My wise Ethel! Who I might add should just let me enroll my children in the School of Beth! ESPECIALLY the attitudinal pain at the moment! Yes I mean your Carlooie!
I don't know about everyone else but my kids have always tested me during their odd years(3,5,13!) UGH!
Hi Beth,
It's Beth! From Not That You Asked.
Thanks for visiting my blog and commenting. I've been enjoying reading back on your blog for a bit and getting to know Hannah a little.
After reading your post about making preschool friends, I agree with what you've said and realize that much of the responsibility for making friendships begins with us. If we initiate, I believe people will reciprocate. I'm reminding myself of that girl I went to high school with who sat in the back of all the parties and church events waiting for people to talk to her and got all hurt when people didn't. You have to make an effort!
My boys (twins, one with Ds--I don't know if you caught that) by the way, don't seem to notice or care. It's me projecting my own sense of rejection.
On the preschool front, I've never written a letter like the one here.
Jude attends a developmental preschool where he is not the only child with Down syndrome so it didn't seem necessary. Half of the class are "typical peers", and we were welcomed to observe when Jude was 2 and found the class to be a very inclusive, nurturing and stimulating environment. I have no complaints about it at all.
A letter like this is a great idea though, one I'll "file away" for future reference when Jude begins school in a couple of years.
In the meantime, if it's really important that the boys have playdates and party invitations, I'll have to make the first move. I'm a little introverted by nature, more so as I get older, so reaching out is work!
That's one of the reasons we're thinking about the swimming pool...
an easy lure to get kids and their families to want to come over and play with us! They may get here and find out we're kinda fun!
Yes, it was Beth at Not that you Asked - dang Linda beat me to it, LOL!!
This is just a little something that, selfishly, I would LOVE you to do. Do you think you could make hot links to your posts about school, ieps, and the like? Like on your sidebar? All of these posts are great and it would be awesome if people could easily access them years down the road (namely ME!! LOL!!) I know I can search via keyword, too, so no pressure. ;-)
Beth, I love the idea of that letter, wish we had thought of it when Adam was younger. We did always go into his class and talk about down syndrome, really in kindergarten the kids were all pretty clueless that he had ds and they didn't seem to careless he was invited to all the bday parties, In 2nd grade the kids I started asking us amazing and caring questions. We were so impressed with them!! But, I love the idea of the letter!!!
It does sound like Beth's post that you're referencing: http://not-that-you-asked.blogspot.com/2009/04/whats-wrong.html
Thank you so much for sharing this letter. I'll have to keep a copy of it somewhere safe for when we need it.
I do feel kind of bummed, and already exhausted, though...knowing that we'll have to deal with this issue every time we enter a new situation. Hopefully, it won't be for as long as I'm thinking.
That is such a great letter. I am going to file it away for when Joel goes to school. Thanks for sharing this!
Just found your great blog. Brilliant to meet you all and to hear about Hannah.
Penny Green
Down's Heart Group
www.dhg.org.uk
Just found your blog for the first time. Thank you for your words of wisdom - I think the once a week playdate is a fantastic idea! And I love the letter to Hannah's classmates families - I'm definitely going to file this one for when the time comes for Brennan to start school. Thank you!
Beth, I hope you don't mind, but I'll be borrowing your letter for Gabe's JK teacher and classmates' parents.
I think if I would have done this when he began preschool, it would have easily open the door for communication among all parents waiting to drop off and pick up our children.
Often I would find parents staring, and eventually, some decided to bridge that gap, and talk to me. But it was a long time coming.
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