Seriously, the best part of our day at the corn maze was the petting zoo. It was a large pen where you just entered and all the animals were in the large pen (not behind gates). I thought Micah would be scared, but he was immediately thrilled (he's rather scared of dogs, so this somewhat surprised me). He laughed and laughed!
When Micah first saw this cow, he said, "Oh... cow! Hi, Cow. Mooooo." Hilarious!
Matthew had a bit too much fun chasing this chicken.
Micah has some significant sensory issues. I know I've mentioned that before. He would prefer to NOT do any artwork at school (as in, "Don't even THINK about trying to put that crayon/gluestick/paintbrush/scissors in my hand"). We went to a fabulous corn maze today. They had the best.pettingzoo.ever. We weren't feeding animals behind a fence... we were inside the fence WITH them (cows, chickens, goats, sheep, ducks) and we were able to feed them. Micah LOVED it. We walked in and he said, "Ohhhhh... cow... Hi, cow. Mooooo." Hilarious! And he loved just standing on the top of the straw bale maze. It was his king-of-the-mountain experience, I guess. But the best part? After watching everyone else play in the corn pit for a while, Micah actually decided to venture in. On his own. No prompting required. Unbelievable! Unfortunately, our camera is out of battery and I can't download photos until I get the camera charged (no, I can't just take the memory card and put it into my laptop, so don't bother recommending that). Anyway... you'll have to wait until tomorrow for more pictures (better than this one from my phone). And trust me... there are LOTS of pictures.
Lots of kids with Down syndrome have a close relationship with a pediatric ENT doc (aka, otolaryngologist... can anyone actually pronounce that?). Micah's ENT explained it this way: One of the physical traits of individuals with Down syndrome is a sort of flat face. That results in less space on the inside. So their nasal passages are more narrow, along with their ear canals (and less room for their tongue to hang out in their mouth, I think, but don't quote me on that one).
Micah has been fortunate to not need ear tubes. In general, he hasn't had any more ear infections that a typical kid. But his sinuses... that's another issue. Last July (2010) Micah had a sleep study. He would not allow ANYTHING on his head, so we really didn't get much out of the study except that they determined that he did not have obstructive sleep apnea. The did record 30 awakenings. But it wasn't enough for anyone to recommend a tonsillectomy. Ugh.
Micah is a crummy sleeper. Always has been. But when he's sick... it's awful. Micah has been on antibiotics for a sinus infection for 3 weeks (first course of 10 days resulted in a return of the goopy eyes, etc., just 24 hours later, so we're on round 2 now). He can barely breathe overnight. We give him a decongestant and spray lots of saline, but it doesn't do much good. I discussed this with Micah's pediatrician today. She said his tonsils look ENORMOUS (no surprise), and given his symptoms, she thinks there's a lingering issue with his adenoids (adenoiditis) due to the sinus infection.
So... MAYBE this will be our ticket to a tonsillectomy and adenoidectomy. We got in fairly quickly (next Wed.) to see his ENT. Micah's ped said that his ENT doc is one of the few that does a partial tonsillectomy, which results in a quicker recovery and is less painful.
When Micah is sick (like he is right now), his eating gets even worse than normal. He gets gaggy (because there isn't room in the back of his mouth to handle the food?). I've heard that *some* kids' eating gets worse after a tonsillectomy because they can't manage food is a LARGER area back there. Personally, it's a risk I'm willing to take because it's not as if is eating is stellar NOW. (do I need to post about his eating, or lack thereof, or are you, my readers, sick of hearing about my frustrations with my tube-fed kid?)
When I posted last week about inclusion and mainstreaming, etc., I did not mean to imply that I am not a proponent of full inclusion. I love the full inclusion model. What I *meant* to communicate is that I do not believe that it is the best thing for every child.
Micah is in full inclusion preschool. I expect full inclusion to work for him for many years. If it works for him for the rest of his education, then that would be GREAT! But I'm also okay with him being pulled out if that is the BEST decision for Micah's education.
I learned some valuable tips from PACER, an advocacy center here in MN. One of the best workshops I attended was about IEP's (Individualized Education Program... this is what is created every year for a child with a disability to set goals and accommodations for that child's education... the school must follow the IEP). The parents leading this particular seminar talked about the importance of the correct order for the creation of the IEP.
1. Evaluations 2. Needs 3. Services 4. Placement
Too many people (parents and educators alike) focus on the placement first (i.e. full inclusion) rather than the other pieces. I think IEP's warrant their own blog post, so look for that in the future.
Ironic that our "anniversary" of Micah's diagnosis is in the month of October... Down syndrome awareness month. I'll never forget that call:
"I have the results of your amniocentesis and I have bad news for you. Your baby has Down syndrome. Do you have any questions?"
Couldn't think of any. And in retrospect, that was probably a good thing. Because I'm guessing the guy wouldn't have given me the most accurate information. He wouldn't have told me about early intervention. or reading ability. or prom king. or international speaker. or husband. or homeowner.
Those early days of the diagnosis were dark. really dark. We went though grief. "How do you launch a broken arrow?" was a question actually uttered in our house. Oh, how I wish I could go back to that couple and tell them that their son's smile would melt their hearts. that his hugs would melt completely into their chests. that he would teach them more than they ever wanted to know about themselves. that he would teach them more about God than any other human possibly could.
A question often asked of parents of a child with Down syndrome is, "Is he high-functioning?" While we parents understand the question, we're often tempted to ask you, "Is YOUR six-month-old high-functioning?" I had people ask me how "severe" his Down syndrome was, even before he was born. So, let's talk cognition. Individuals with Down syndrome will usually fall in the mild to moderate level of cognitive delay. Just like with typically-developing children, there is no way to know in utero what that child's IQ will be. [Individuals with Down syndrome are usually very advanced in their social/emotional IQ, however. So in some ways, they are often smarter than us.] :-) Historically, our society has viewed individuals with Down syndrome as unintelligent. I believe that one of the reasons for the misperception is speech. They have historically had a tendency to have poor speech. I believe that in our biased minds, we tend to view individuals with poor speech as not being as smart as someone else. Research shows that the primary challenge facing individuals with Down syndrome is working memory. DownsEd has done some research in this area. Here's a link to a great article they wrote about it. I find it interesting that they talk about the phonological loop being a primary culprit. It makes sense. Our kids tend to be visual learners, rather than auditory learners. So, additional research is showing that by teaching children sight words at an early age (as early as 18 months!), you can help their speech development and working memory. Rock on! Are you ready to read, Micah?! More on that in a future post. Back to cognitive development. Beyond the brain training activities that can help develop their working memory, there are actually clinical trials going on right now that are researching effects of a medication on cognitive development. I hope this research progresses quickly! Stay with me here. This is not because I want Micah to be smarter so that I can say he's smarter. I want Micah to have the best possible opportunities to be happy. My guess is that he'll not be happiest living with Mom and Dad the rest of his life. So I want to do whatever I can do to enable him to live independently and be happy. Do you have to be smart to be happy? No. But if there's going to be an opportunity for him to improve his chances for getting a good job, and apartment, etc., then I'd like that opportunity to be presented to him sooner rather than later. I'll try to blog about the research sometime soon.
So back to the original question... I don't know. Personally, iiiiiii think he's pretty smart. :-) He's been fairly slow in his motor skill development. But I've heard that doesn't have a correlation to intellect. We'll do what we can to foster his cognitive development. But ultimately, God is in control of his life. We have him only for a short time. And what a blessing he is!
Micah knew the alphabet, numbers, colors, and letters when he entered preschool this fall. And he says them out loud (he sometimes signs the colors when he says them). A few of my Facebook friends asked how we got him to that point. So, here are some of the things we've done with Micah to prepare him for preschool:
1. Alphabet: Foam letters and numbers for the bathtub. Micah loved picking up a letter and asking what it was. Eventually, he knew them himself. They're great because it engages multiple senses (adds tactile).
2. Alphabet: "Chicka Chicka Boom Boom" book
3. Alphabet: Magnetic letters and numbers. We don't have a fridge that works with magnets, so I bought a small magnetic chalkboard with wooden magnet letters (Melissa & Doug).
4. Numbers: Count everything :-)
5. Numbers: see #1 and #3
6: Shapes: wooden puzzles
7. Colors: "Favorite Things" Signing Time video (the song, "Do You Know the Colors of the Rainbow," is addicting)
8. Colors: Point out colors of everything your child sees.
9. All of the above: Flashcards, preferably those with texture and pictures.
10. We're currently working on categorizing by colors (next is categorizing by vegetables, fruits, vehicles, etc.) with some flashcards I bought at Target for $1.
11. The best $50 I spent was on a Teach My Toddler set. It has multiple activities for all four of the areas of focus. When "testing" your child, start with just two choices. It has taken Micah a LONG time to look at a page with a lot of information and point to something red, for example. It's often too much information and he just can't absorb it all. When he had learned his colors, etc., I could point to something on a page and ask, "What color is this?" and he could say "Red." But if I asked him to point to something red, he couldn't do it. He really enjoys one of his iPad apps where he has to choose between just two colors, but he likes it because it's easy now, LOL.
I've been searching my blog for a post about Gracie and I can't find one. How sad! I mention her often on Facebook, but I haven't been a consistent blogger this year and this proves it.
Gracie wasn't expected to make it to birth. Then she wasn't expected to make it through heart surgery. Then her parents were told that her heart repairs were as much as they could do (and it wasn't going to be enough). And then her mom found a stellar surgeon in Boston who said he could fix her heart and he did. I'm leaving out a lot of details here, but suffice it to say that Amazing Gracie is the appropriate nickname for this kid.
Isn't she just yummy?!!! (Micah says, "hubba hubba!")
This kid had 80+ people walking on her team at her first Step Up for Down Syndrome (SUDS) walk... before she was BORN last year. And I got to hold her there this year. Amazing. She's one blessed little girl. Her mommy, Carrie, is a special education teacher and advocates for this girl like crazy. And her daddy is crazy head-over-heels for both of his little girls (Gracie has a big sister, Lylli). Rich actually blogged about Micah and me the other day. I love reading Rich's blog. Most of the blogs about kids with Down syndrome are authored by the moms. It's refreshing to hear a dad's perspective.
I'm honored to be mentioned on Rich's blog. It means so much to me that Micah can give others hope about the future for their kids. I worry that because he's been so plagued with health issues and that he's been so delayed in his physical development, that people will view life with a kid with Down syndrome as too hard. I hope that people see the benefits of life with Micah far outweigh the challenges.
On a separate note, my long-time readers might remember me mentioning a little girl named Carly who died while Micah was struggling with toxic shock syndrome in April 2010. Understandably, this has been an incredibly awful 18 months of grief for Joany. Last week, Joany's daughter headed off to the Navy. Then on Saturday, tragedy struck their family again. This time, they lost their house to a fire, along with all of their memories of Carly. And if you can't imagine it getting worse, it can. Their son, Brad, died in the fire. Please pray for the George family. I cannot imagine...
Micah used to sign... A LOT! I had the Signing Time theme song running through my brain all.the.time. I truly believe that signing has helped Micah speak. We don't teach him new signs very often anymore because he is vocalizing more and he has a lot of other educational stuff going on. Signing is beneficial for ANY child, not just those with Down syndrome. It teaches the value of language (note that there is a difference between language and speech) at an early age and encourages effective communication.
I'd like to add that because Micah's feeding tube would result in lower strength in his facial muscles, combined with the low muscle tone present in kids with Down syndrome, well, I was TERRIFIED that Micah wouldn't speak. Learning sign language definitely helped (along with a LOT of hard work by his therapists). Anyway... I'd like to pass along a great sale coming up on Monday.
Our favorites have been the Baby Signing Time series for the little people. Then we "moved up" to the regular Signing Time series. Micah's favorite videos then became My Favorite Things (colors and foods), Leah's Farm, and Zoo Train. From there, he went on to love My Neighborhood and Welcome to School. He enjoyed the others in between... I just thought I'd share what his favorites have been. For those of you with littles... consider asking for some videos for Christmas gifts. The 25% off sale on Sunday and Monday is a great deal. Have fun shopping!
Micah doesn't really speak in sentences yet. But he does have some "specials" that he uses often.
1. "I want _____ please." (these days, 2. "I nuh no." (I don't know) 3. "Gag, u rit." (Tag, you're it) and my favorite 4. "I funny."
Trust me... the "I funny" is used at appropriate times. For example, when playing catch and he intentionally throws it away so you have to run down the driveway to get it. Or when he says a funny word at dinner (i.e. "dooooood").
When I was in San Antonio at the National Down Syndrome Congress annual convention this summer, the last workshop I attended was hosted by a group from Nashville (my hometown for nine years!). The presenters were a parent, a teacher, and a professor from Vanderbilt. They have created a program, called Heart to Heart, for kids with Down syndrome at a (pricey) private school, Franklin Road Academy, in Nashville. The dad who spoke has a son with Down syndrome. He had two other children at this school and his middle son went to public school. When having a discussion with some other school board members, they kept referring to the "FRA family." After a while, this dad finally said something to the effect of, "This is not my family. Not when my son is not welcome here." This threw this school for a loop. Ultimately, they decided to put their money where their mouth was. They searched the country for a K-12 school that had a program for kids with Down syndrome (or any special need, I think) and they couldn't find one.
So they created one.
With some interesting characteristics. 1. Funding would come from outside the general budget (basically, so no parent could say they didn't want to fund a special ed program with their tuition payment). 2. The program would have no impact on the rigorous academics currently in place at the school. 3. The students in the program would not receive diplomas; rather, they would receive certificates of completion. 4. The program would be limited to a maximum of two students per grade, and only as funding permits. 5. The students in the program would pay tuition just like everyone else (roughly $15k/yr, if you're curious). 6. The program is only for students with Down syndrome (which was met with a bit of contention from a few parents who have a child with a different special need, such as autism, but the reason is that the teachers are able to research Down syndrome learning styles and fairly easily customize a learning program for each child).
This is not a full inclusion program. It's a mainstreaming program. What this means is that the students are pulled out for specific classes, such as math and reading. There is one teacher for two students. That teacher (I think) writes their exams for all their classes (if they need modifications) and teaches them during pull-outs. (side note: I'm not a full-inclusion proponent, unless it is the best place for a specific child. It makes me crazy to hear parents talk full-inclusion for everyone. If the best place for Micah to learn math in sixth grade is in a resource room where he can catch up on areas in which he might have fallen behind, then that's where I want him to be.)
The best part of Heart to Heart is that the kids in the program are getting a great education and are truly a part of the school. When you watch the video below (it's about 5 minutes long), take note of the comments made by the parents of the typically-developing kids, as well as the teachers. Take note of the well-spoken 5th grade class president and how they chose the Buddy Walk for their service project. (if you are reading this blog posting in an email, you'll need to click here to see the video)
Side note: bullying at the school has decreased at the school since the Heart to Heart program began.
There are many parents of typically-developing kids who don't think our kids with Down syndrome (or other delays) belong in a regular school. This program, I believe, shows that the opposite is true.
I received a question from Lisa today."It would be interesting to read a blog post for this month on the interaction between siblings in your house---how Down syndrome does or does not impact the boys' relationships, how their relationships with Micah or with each other ...continue to grow and change. Do they resent Down syndrome? Do they ask lots of questions (I'm primarily thinking of Nathan here, of course). How do you approach treating them "equally" when Micah needs things that the others do not?"
It's an interesting series of questions and I've often wondered about this too. So, I'm going to just process the answers while I'm writing.
As far as Down syndrome impacting their relationships... About a year ago, Nathan told me for the first time that he loves Matthew more than Micah. That really stung me hard. I had to remind myself of the following: Matthew was running (Micah wasn't even walking). Matthew plays with Nathan (Micah wasn't interested in playing WITH Nathan). Matthew wants to BE Nathan (maybe providentially, Micah couldn't care less and doesn't imitate anyone, much to my chagrin as it relates to eating, drawing, etc.).
So I guess that means that Down syndrome has somewhat "delayed" a peer relationship between Nathan and Micah. Nathan will now occasionally slow down enough to play with Micah. But Micah has no interest in the typical boy tackling thing. I'm guessing that a good part of that is related to his poor vestibular processing (google it if you're interested... can't really describe it fully right now, but it affects Micah's balance and "gravitational security"). He also isn't a big fan of touching things... anything... so that includes his brothers most of the time. Here's an example:
I didn't post these pics after I took them because it looked like Micah was not included with his brothers. Sadly, that is usually by his own doing. Don't get me wrong... they LOVE Micah. And they are playing together more often these days. It usually involves a ball. And Micah is starting to find it funny to intentionally throw the ball so someone else can't catch it (then he says, "I funny" and laughs hysterically... class clown in our future).
As far as I can tell, Micah's brothers don't "resent Down syndrome." I tried very hard to involve Nathan when Micah was little and had therapists coming over to the house to work with him. And Nathan was pretty little when Micah was born and he was only 2 1/2 when Micah had his open-heart surgery. That said, life was much more complicated back then (esp since Micah was on continuous feeds on his feeding pump). We tried to NEVER say, "No, Nathan, we can't do that because Micah ____." (fill in the blank). I've always taken Nathan out every week for a lunch date, just the two of us. We have been blessed with help so that I've been able to do that. I now do the same thing with Matthew (much easier now that Micah is in preschool and Nathan is in Kindergarten).
Nathan hardly ever asks anything about Down syndrome. I think that's primarily because Micah was born when he was still young and doesn't know anything different. I'm sure the questions will start coming more frequently as he meets new friends in school who do not have a sibling with different abilities. We went to a birthday party for a friend last weekend and on the way there, Nathan asked me, "Does K have Down syndrome?" I told him she does. He said, "Oh." That was the extent of the discussion, LOL. In the spirit of the research, I just asked him what he thinks it means that Micah has Down syndrome. He said, "It means he grows slower." That's all I got out of him. :-)
I'm sure there's wisdom in why the ARC runs "Sibshops" for kids who have siblings with "special needs" and the Sibshops don't start until age 6. I'm guessing that's when they can really start to verbalize any potential issues.
Brian Skotko's group (Children's Hospital in Boston) just published the results of a survey. Here are some highlights: The study evaluated responses to similar questions from 822 brothers and sisters age 9 and older (estimated response rate, 19 percent). Of the siblings age 12 and older:
94 percent expressed feelings of pride about their sibling
7 percent felt embarrassed by their sibling
4 percent would “trade their sibling in” for another
88 percent said they felt they were better people because of their sibling with Down syndrome
Of siblings aged 9-11:
97 percent said they loved their sibling
90 percent felt their friends are comfortable around their sibling
Good stuff. If you want to read the whole article, you can find it here. Thanks for asking, Lisa!
Okay, so no one asked me about this (because I have no other questions from my readers, hint hint), but I'm going to address what is, in my mind, something critical that all parents of kids with Down syndrome understand.
Our kids tend to learn differently than "typically-developing" kids.
Am I stereotyping? Yep. Is that okay? Sometimes.
I read a quote on FB today on a page dedicated to iPad apps for kids with special needs. I think it's great! It was written by someone named Jean. She used an ancient Chinese proverb as the base for her analysis:
Tell Me and I Will Forget Children with speech language disorders do not learn well in a lecture style formats that take place in schools. They easily become overwhelmed by too much auditory input and shut down. ** personal note: This is a BIG deal with Micah.
Show Me and I May Remember Using visuals like schedules and social stories to assist in the explanation of language helps in the learning process.
Involve Me and I Will Understand Hands on projects and activities assist in embedding the learning and making it real.
The Chinese proverb is generally true for everyone. But Jean put legs to it for our kids who tend to be visual (rather than auditory) learners. Individuals with Down syndrome tend to be visual learners. Apparently all babies start life as visual learners, and we progress to auditory.
There's a small bit of controversy within the Ds community as to whether we should tap primarily into the visual learning style or spend time developing the auditory style. I'd love to hear some feedback and discussion on my opinions here.
I'll give an example of Micah's visual learning strength. I think most kids learn the alphabet via the classic alphabet song. My "bookend kids" (oldest and youngest) are no exception. Micah, however, learned the alphabet in many ways. Our primary teaching tool was foam letters you can use in the tub. He would pick one up and we would tell him what it was. The book Chicka Chicka Boom Boom is another favorite. This kid THRIVES on repetition. He also loved seeing us sign the alphabet (this is partly a function of the struggle to get this child to eat... we got sick of counting every bite so we started doing the alphabet).
Visual "schedules" are also very important. This is true in most typically-developing kids too. I mean, how would YOU like it if you went through your entire day not knowing where someone was going to drag you next? Guilty as charged. I need to do a better job at this at home. But Micah's teachers do a great job at school. There are pictures inside his locker that show what he has to do before going to the play area (hang up his backpack, take off his coat, hang up his coat, close his locker, wash his hands, and dry his hands). I love this post another mom wrote a few days ago.
I'll do a separate post on reading. But in a nutshell, kids with Down syndrome tend to not understand phonetic reading until a few years into school. Learning sight words prior to Kindergarten really give them a boost when they enter school. We're starting a bit of that with Micah.
Working memory is the biggest challenge for our kids with designer genes. I think I'll address that when I discuss reading programs. Some of you out there work with medications for your kids to help with the memory issues. Anyone care to comment? I know gingko is a "drug" of choice for some. We haven't tried it (yet) with Micah. I'm planning to ask his cardiologist about it on Friday at his checkup. I've heard that it has some blood-thinning properties and I want to make sure that it won't have an effect on his valve leakages.
I got a great question from a friend. Rachel asked, "How do you want me to help my children understand how/why Micah is different (and the same) from them. I feel like we've done a pretty good job explaining, but I want my kids to have a compassionate understanding while at the same time understanding that people with different abilities are able to do MANY of the same things they do."
Great question! I'm not necessarily the right person to answer this question, because I've barely even talked to our Nathan about this. But... my personal experience is that it's ALWAYS best to focus on the similarities. That tends to make the differences less important. I think that helps all of our kids relate to kids that are different in any way from them (not just in their intellectual or physical development). Micah has friends, he smiles, he laughs, he climbs playsets, he knows his ABC's, colors, etc.... those are all things that most kids can relate to their own abilities.
I find it easiest to put it as close a context as possible. So, with your 5yr old, for example, when they ask why Micah can't run, you can point out how your child's younger sibling couldn't walk as soon as the 5yr old wanted him to walk. But look, now he can walk. That conversation also enables you to point out that Micah too had to crawl before he could walk too. and that he will learn to run, it just might take him longer than other kids.
If your child is old enough to understand the concept of strong versus weak, you could also tell your child that, most of the time, kids with Down syndrome have lower muscle tone than other kids (at a young age, I wouldn't try explaining that low tone does not mean "weak"), and that means they have to work harder than the rest of us to learn to do activities like crawling, walking, running, jumping, drawing, eating, etc. I know other friends who have gone into early primary classrooms and discussed Down syndrome with the kids in the class. A book that lots of people use is We'll Paint the Octopus Red (I just got it on my iPad last night... it was on sale yesterday and might still be on sale). I know I'll do that with Micah's class someday. I'm not sure about Nathan's class. Does that do too much to point out that Nathan's brother is "different"? Any other parents out there have any thoughts?
Rachel, I so appreciate your heart to teach your children about respecting and honoring others.
Yes, October is here again. I've been a VERY inconsistent blogger this year, so I plan to make up for that with the annual 31 for 21 blog challenge.
New here? Wondering what that is? Well, October is Down Syndrome Awareness Month (yes I'm aware that it's also Breast Cancer Awareness Month, but thankfully that hasn't impacted my life as much as the other). There are 31 days in October (hence the 31). An individual with Down syndrome has 3 copies of the 21st chromosome (hence the 21). The challenge is to blog every day for the month of October. The primary purpose is to educate, inform, and advocate.
So... what do you want to know about Down syndrome? About Micah? Maybe one of the following issues makes you think of some questions: medical issues, cognitive development, research, inclusion, government funding, prenatal testing, long-term concerns, siblings, etc. Pick something and ask away.
Welcome to our family blog. We have three boys: Nathan (7), Micah (4), and Matthew (3). Nathan is our energetic, sports fanatic first-born. Micah is our charming little guy, who happens to have an extra 21st chromosome (aka Down syndrome) and multiple associated health issues. Matthew is our big-boy-wanna-be. I started this blog the day after we found out that Micah has designer genes (Trisomy 21, aka Down syndrome). We've been through a lot of ups and downs (and a lot of time in the hospital), but God is faithful and continues to show His love toward us.