Abby's Gifts

At our very first Down Syndrome Association meeting (Nan=8 weeks old), we met The Most Wonderful Corrigan Family.  We became fast friends.  Their twins are just 6 weeks older than Hannah, so our families have gone through many of the same emotional and developmental challenges together.   Emma, the older sister, has Down syndrome; Abby, the younger sister, has Typical Child syndrome.

Many of you know Emma and Abby as preschoolers from the documentary film, Emma's Gifts, or from my posts.   Their parents, Mike and Mitzi, are amazing people--kind, creative, loving and supportive parents.   It was clear early on that Abby inherited her parents' tremendous theatrical and musical gifts.  Abby shines the most when she's on stage.

I'm excited to share Abby's YouTube debut, age 11, singing "Teardrops on My Guitar".    Abby has big dreams, and I'm sure she'd love to see some huge numbers on her view counter!   Take a minute (or 3:19 minutes) and you can say you saw her when she was just starting out!   

 

Abby on YouTube here.

Abby and Hannah, age 8

Looks like she's going to lose this pancake...

Give a kid some knife skills and some blueberry syrup and she'll ask to play with her food.

Making Preschool Friends

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 I guess that by already having withdrawn from some mainstream societal rituals by choosing to homeschool our children, I wasn't that "hung up" about what most people call "socialization".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.

The Daddy

These pictures are from almost five years ago. I came across them when I was looking for the Tom Chapin picture. I think these photos give a pretty good idea of how much Hannah and James love each other. They are so silly together!

Megan Blake: SuperMom!

Thanks to all you who voted! Megan won the contest!! Yippee! She deserves this, and more!

From RichmondMom.com:

Ms. Megan Blake, with over 400 votes! Megan’s nomination was submitted by Jill Lutz, reading: “After Megan’s daughter was born with Down Syndrome, she started “First Call”, a support group for families whose baby has received a diagnosis of Down Syndrome. Megan also serves on the DSAGR Board of Directors. In November 2008, Megan was diagnosed with breast cancer. She is bravely undergoing chemotherapy and still manages to be a SUPER mom.”
Megan will enjoy almost $4,000 in prizes from our incredible, generous contest sponsors.

Favorite Children's Music

Children (and adults) with Down syndrome really engage with music. Just attend any Down Syndrome Conference and there is sure to be a karaoke contest and a dance. It is completely wild. And hysterically fun.

Hannah has always loved music. When she was just six months old we caught her swaying her head back and forth, rocking to the rhythm of a song. She has learned so much from songs--calendar skills, counting, ryhming, penmanship (yes, really! HWOT songs), jokes, how to cross the street...it's amazing. All that from listening to CDs. If I make up a song (usually an amazingly lame witty song) about something, she'll remember it so much faster than if I just use spoken words. I don't know what it is about adding a tune makes the auditory processing better. That would make a good research study for some Psychology graduate student.

A little off topic are we? Yes. Back to the originally scheduled post.

Since we began growing our family in the 80s, we started off with leftover Raffi, Sharon Lois and Bram, and Joe Scruggs. We were already well sick of them before Hannah was born, yet that's what we had on hand. She loved all the songs, as dated as they were.

When Hannah was little she loved the Discovery Toys CD, Sounds Like Fun. It is slow and repetitive (= annoying), but she learned most of her letter sounds from this CD.

Though he's not a singer, Jim Weiss is another of Hannah's favorite performers. He tells the most wonderful stories. All of my kids have loved Jim Wiess' recordings. It did take Hannah while to actually pay attention to a CD without songs, but I looked at it as another auditory processing exercise. (Books with a tape or CD recording is another thing entirely--they helped tremendously with her reading speed--terrific practice for emerging readers.)

Bill Harley and Billy Jonas are two other musicians Hannah enjoys. I don't think they are quite on the same level as these next two perfomers though.

In the past few years she's become a fan of Tom Chapin. We don't mind Tom so much, since most of his songs are witty and clever. Hannah has been to a few Tom Chapin concerts (and Kate has even been a back-up singer for him, but she doesn't like him much. Sorry, Tom, the truth hurts, I'm sure.) Some of our favorite CDs of Tom's are This Pretty Planet, Family Tree, and Zag Zig. If you want a sampler of his songs, try Great Big Fun for the Very Little One.

Here are Hannah and Tom after a concert a couple years ago:

The concert was doubly exciting because another of her favorite singers was there as well.


This is Red Grammer. He has some very catchy songs. If you've got a preschooler, start out with Can You Sound Just Like Me. If you like it, then move on to Down the Do-Re-Mi, and Hello World (which is probably better for early elementary ages).

Have you noticed that Hannah only likes male singers? That's not completely true. She does like Cathy Fink, and, of course, Shirley Temple! I recently discovered that Hannah actually can *almost* match pitch if the singer has a high enough voice. I can't sing high enough for Hannah to get into her "head voice". Perhaps there is hope for her--once Kate comes home!

One common thread to Hannah's favorites is that all of her preferred performers also have DVDs of concerts. She really likes to play back-up air guitar when she watches any of these guys perform! (Did I ever mention that she's asking for an electric guitar when she turns 13?)

Hannah's Early Education

Warning: I'm too sleepy to check for errors. Forgive me for whatever lapses there are in the text! I'll fix them one day real soon. Maybe.




I've been prompted to write a little bit about Hannah's early years by Brandie at Living for the Love, along with several local (and not so local) friends who are transitioning into preschool or Kindergarten.

We lived in Charlotte, NC when Hannah was little. When she was about 2 months old (and finally home from the hospital) we started to look into Early Intervention. I had done some reading about it, and already had an idea about what I thought EI should look like, and how it could/should be implemented.

We started off interviewing with the local county services. We learned that there was no center-based Early Intervention--no colorful classroom filled with therapeutic toys and therapists--no Parent/Child groups to teach parents methods to assist their child with development. What the county offered, with a long wait list, was 30 minutes of an Assistant Physical Therapist, coming to our home. They also offered an "Educator" who would come and "play" with Hannah. And they would bill our insurance company for providing these "services"--and we'd have to pay our regular co-pays.

So, we looked into private therapy. We figured that for the same co-pay, we could choose who would help Hannah--not who was "assigned" to her. We were fortunate to have a very well trained (Neurodevelopmental certified) therapy clinic in town. Hannah started PT with the owner of this group (for those of you in Charlotte, this is, of course, Child and Family Development). When Hannah turned 1, we added Occupational therapy and Speech therapy. (Can you believe that a decade ago, our very first Speech therapist already knew about Oral Motor therapy? I didn't realize how unusual this was at that time.)

She stayed in these therapies until she was 3+. We were feeling the financial strain of paying for 3-5 therapies a week...and I was getting tired making the drive. We looked forward to the school system taking over some of the therapy load.

My older children attended a very groovy, creative private preschool for ages 3-4. (see photo above, age 4, enjoying the shaving cream table at our beloved Open Door School) I wanted Hannah to have the same experience. She needed time to be a regular kid. I had NO intention of putting her in a self-contained classroom. I was not so closed-minded to shut out the possibility that Hannah might benefit from some exposure to such a classroom, but the school system refused to let me see the classroom in action. If I can't see where my child is going, I'm not going to agree to it. It's a stupid rule to not allow parents to observe the prospective classroom, and while the idea behind it is to protect the confidentiality of the students, a simple signature on a waiver form ought to be able to do the same thing. There is no way I am ever going to allow a vulnerable child of mine to go into an unknown setting.

Our first IEP meeting was interesting. It was apparent that the Preschool Special Education teacher assumed that we would follow the standard protocol of letting the "experts" do their thing. All of Hannah's goals were written as if she would be in a classroom setting (and of course, the setting is the LAST thing determined on an IEP). I let them do their thing, but when we got to determining placement, I said that their setting was too restrictive. They did not have an inclusive preschool class for Hannah, and Hannah's regular educational setting was my home, with typically developing siblings. I knew that the school system provided itinerant services to children who attend daycare. Teachers and therapists were even sent to in-home daycares. But the School System refused to provide itinerant services to our home. So, if Hannah was in "daycare" at my next door neighbor's house, she'd get services there, but since she was in "daycare" at my own house, she could not. Don't you love "policy"??

After much hassle, and several more IEP meetings, they relented and Hannah was the first student in the system to receive in-home services (not the same as Home Bound services). Here's the key to this--if anyone wants to push the buttons: For the Preschool setting, there is NO hierarchy of placement settings. Home happens to fall further down the list of placement options, but it is not more or less restrictive than other settings. For elementary grades, home is considered to be much more restrictive than even a self-contained classroom. Every preschool child should get services provided in their Regular Educational Environment. (That's my version of a "yelling" font. One day I'm going to invent it, along with the "sarcasm" font I so desperately need.)


Hannah received 2x 45 minutes with the Special Ed teacher, 45 minutes of OT, 45 minutes of PT and 60 minutes of Speech. There were 6 weeks left in the school year. We ironed out that, in the fall, services would remain the same. They wanted to come into Hannah's private preschool, but I wanted that time to be Hannah's "regular kid" time--where nobody was bugging her about using a pincer grasp with her crayons, or trying to get her to produce 3-word phrases. So Hannah attended her preschool two days a week, and spent the remaining three days shuttling between therapists.


It didn't take us long to figure out that this was WAY TO MUCH therapy for Hannah. She was getting oppositional with most of her therapists (read: all of her school therapists, none of her private ones). By the end of the school year we withdrew her from the public school system.

At age four, Hannah received OT and ST privately, and attended her preschool three days a week.


At age five, Hannah started formal homeschooling (if you could call it that!). We have always had a very relaxed approach to homeschooling. Hannah was an early sight reader (Love and Learning to start, then growing beyond that). I really couldn't tell you exactly what we did in terms of curriculum, but mostly we played games, read books, counted things, and explored the world.


As fas as IEPs go, I found that I was invigorated by the challenge of standing up to a powerful system, advocating for my daughter, getting what I thought I wanted. I know IEP meetings can be stressful and quite difficult for parents who are new to the system. Over the years I've probably been to at least 30 IEP meetings with different families. It is something I enjoy. Many IEPs are uneventful. But I don't mind a little conflict if it happens to occur. It doesn't bother me not signing an IEP. I don't mind going to Due Process. Even if we don't get everything we want, it's always good to have done our best for the child.