The Following is Evie’s Sleep Treatment Story as Told By Her Mom, Jen Alge:
Read about new research that links sleep issues with cognitive, memory, language, and behavior issues HERE.
I could write a book about this. Evie’s had 7 sleep studies. Her first was at 11 months, because they were trying to rule out pulmonary pressure issues before doing heart surgery. She had mild apnea then.
We did another sleep study before her first set of tubes and they found she had severe sleep apnea. They put tubes in and took the adenoids out. She still had severe apnea. They then did the tonsils along with a tear duct probe and another set of tubes. Then her apnea was moderate so the tonsils helped a bit.
Then we did a simi MRI to get a better read on her airway. That helped the docs a ton. I highly recommend that procedure. But that showed us just how obstructed her airway is so that’s when we started the CPAP (Central Positive Air Pressure). Due to her tiny facial structure and age (she started this when she was 4) it took a while to find the right mask and pressure that she would tolerate.
Doing a sleep study to titrate the machine was the most challenging sleep study- keeping a canula in with a CPAP is rough. So they gave her ambien to get that result. Then after several months of her only wearing the CPAP for 2 hours we did another sleep study and this time with a time-released melatonin. That did the trick.
So Evie takes a pill like a champ every night along with her nasal steroid and allergy meds to open her airway. After we got her pressure where it works best and a full face mask, she wears her CPAP an average of 7 hours a night. Now, she’s on a pressure of 11, and the full face mask isn’t the best option because when she moves the seal breaks pretty easy. So we’re not at the finish line yet. But the docs are happy with her use and they want to kick us out of the upper airway clinic.
I’m holding on because, yes, she does wear it on average 7 hours a night, but that’s only because I’m in her room 5-8 times a night at least putting the mask back on. She lets me put it back on, but man is this lack of sleep going to get old someday soon. And I’ve definitely considered other options like orthodontic pieces and the surgeries they really wanted to do when she wasn’t wearing her CPAP more than 2 hours.
Those surgeries are 3 in total: 1. Cutting the back of her tongue and pulling out some tissue. 2. Cutting away her lingual tonsils at the back of her throat (this is a risky procedure with a long recovery due to the risk of her throat swelling and closing up- lots of steroids) 3. The insertion of a screw under her chin with a string tied to her tongue to keep it forward. Evie’s problem is not the tongue, the throat or the width or length of her mouth- it is all three. So only all three procedures would solve it. Oh and all three procedures only have a 60% success rate so she’ll likely still need a CPAP.
I’ve notice no behavior changes since the treatment. Evie’s always been a smarty pants and she talks all day long so I can’t credit the CPAP for any changes there. I will say she is getting more air and isn’t gasping for breath or snoring with the cpap on so that’s a relief. The behavior changes might be more long term given her age.
A typical week for me may seem like a hurricane to others. It includes 24-hour care of my three kids under 5-years-old, at least three private therapy sessions for my son with Down syndrome, typically one medical appointment, swim lessons, preparing 3 square meals a day, and keeping house (whatever that entails in 2017 LOL!).
I do this with no family support system (the closest lives 500 miles away), and my husband works 80+ hours a week as an Emergency Medicine resident (although he’s amazingly helpful even with his insane schedule).
Looking at our crazy life, one would NOT imagine these days are the sunniest. But in many ways, this is the quiet before the storm!
As the school year fast approaches and my twin boys enter their third and final year of preschool, I realize this is the last year our young family will enjoy the safety of naivety. I have one more year to bask in the glory of unasked questions, the freedom of play, and power of a small circle of family and friends who accept us for who we are: PERFECTLY IMPERFECT!
Troy (back left) enjoying life with his typical twin, Hunter
That’s one more year of easy-peasy IEP meetings, no homework or standardized tests. One more year of kids playing with Troy on the playground without asking why he’s so little or can’t talk like them. One more birthday where the boys want a party with the same friends, same theme, and same gifts. One more year where my boys think of themselves as they are: TWINS.
Next year, my first born sons will start “real school”, and boy has it changed a lot in the generation since I attended kindergarten. You’ve likely heard the news: kindergarten is the new 1st, or is it 2nd grade.
As we peacefully go through life in the safety of our home, I often worry if Troy will be ready. Of course he will, whether I’m ready or not. I also worry that his typical twin, Hunter, will struggle with the confirmed knowledge that Troy is indeed different. The words “Down syndrome” come up a lot in our house, and even though Hunter uses these words freely in conversation he has yet to assign it to his twin brother.
As a parent of a child with a disability, I’ve practiced in my mind how I might explain this revelation of difference to my typical children. Will I choke when the time comes to pass on this sage advice?
Troy’s sister, Cora
My 2-year-old typical daughter, Cora, is the perfect playmate and foe to Troy. Theirs is a love-hate relationship. But I’ve noticed lately she’s been innately mastering milestones that Troy is just starting to find easy: jumping, verbalizing complete sentences, dressing independently.
How will I navigate the rough seas of a younger child surpassing an older one?
Still, these intimate family dynamics will likely not be what causes the biggest waves a year from now.
Instead, it may be the storm outside our doors.
It may be the teachers or school administrators who deny equitable education to my son with Down syndrome.
The older students who ask Hunter why his twin can’t do the same things he can.
The sports coaches who can’t find a spot for Troy to play on a peewee team.
The parents who remark about how “cute” Troy is, while quietly worrying about the impact of his presence in their typical child’s class.
They say meteorology is the only profession where you can be wrong 50% of the time. So, here’s hoping my predictions for the storm to come are unfounded!
Even if my predictions do come true, I realize now it will be ok. We’ve been through a lot as a family, even before our kids were born. Even through rough times, we’ve held tight to each other knowing we’d see brighter days.
And what I’ve learned and hope to instill in my children is the sunniest path isn’t always the prettiest. Sometimes the storm helps you put life into perspective.
Sure, if I we could have it all, I’d wished my kids easy, fun-filled lives, full of lots of interesting friends, successful careers, heaps of money, and perfect marriages. But if we can’t have it all; If I can only choose a few, EASY wouldn’t make it on my wish list.
Instead, I’d rather my children live an authentic life, where they feel compelled to stand up for what is right and good in this one life we’re given. This is the rainbow after the storm in a life connected to Down syndrome. We are the lucky few!
Five years ago my biggest worry was buying the cutest matching outfits for my unborn twin boys. All that changed when one of our boys was born with Down syndrome.
Troy (in the back) and Hunter (in the front)
Troy completely changed our family’s perspective, and set me down a path of advocacy that has changed my life forever.
An outsider may believe these changes would be for the worse, but I continue to be amazed at how many new, unique doors have opened for me because of Troy. I continue to be amazed at how “normal” and happy our family continues to be amongst the messiness of a seemingly scary diagnosis. We truly are the #luckyfew!
Everyone’s path is different, even in the small world of the Down syndrome community. But I’ve found some shared characteristics amongst many of the parents of children with special needs that I’ve met.
Most parents possess that innate strength to do anything to protect their child. Special needs parents just have to flex that muscle more often.
In five short years, I’ve become a champion for my son and his right to a life of self-determination and choice. And I realize I’m not alone. Many disability advocates can identify with the following actions, or something similar to them.
5 Ways You Know You’ve Become Your Child’s Best Advocate
1. Your child’s personal file is larger than your own.
Troy is a really healthy, smart fellow. Still, Down syndrome automatically comes with a long list of doctors appointments, therapy sessions, and Individualized Education Plans. All of this has been compiled on hundreds of pages in two giant 3-ring binders.
Experience has taught me that you don’t know where you’re going, unless you know where you’ve been. Troy’s records help me quickly reference what’s happened in the past, so I can advocate for the best future possible.
2. You can recite federal, state, and local laws that impact your child, and you often know more about these policies than the experts do.
You can recite the meaning of countless acronyms: IDEA, IFSP, IEP, FAPE, LRE, SSI, BIP, ADA, ABA, UDL, ASL
You know your child’s rights under the law, and realize that in many situations it’s up to you to see that laws are enforced.
Personally, I’m working with my Ohio state legislator, Niraj Antani, to introduce a bill that would end organ transplant wait list discrimination for individuals with disabilities. Rep. Antani seeks advice from disability advocates on this subject, because he realizes we are the experts.
In terms of the recent Senate health care bill, Better Care Reconciliation Act (BCRA), I’ve been advocating tirelessly alongside fellow disability advocates to see that Medicaid is not cut. Many legislators are unaware of the important impact of Community and Home Based services Troy and other individuals with Down syndrome receive through Medicaid. It’s our job to educate those in power on the power of legislation, and how it’s revolutionized the disability community in the past generation.
3. You’ve become fast, close friends with complete strangers.
Social media is a powerful force in the disability community. It’s brought together like-minded advocates from around country to rally for a common cause. I have dozens of friends that I’ve never met, but feel a special bond with because of Troy. When I meet these fellow special needs parents at conferences or advocacy meetings, it’s like meeting a distant loved one. There’s an instant connection and a desire to share your path with others like you. It’s what makes us the #luckyfew.
4. Your hobby or new career path includes advocating for your child.
I have interviewed and spoken with so many amazing parents, siblings, and family members that have transformed a seemingly scary diagnosis into an opportunity to change people’s perceptions and create opportunities for their loved ones. Everything from volunteering for their local Down syndrome association to blogging about their experience to starting a business that specializes in special needs planning and marching on Capitol Hill.
Before I had Troy I taught middle school history, and assumed I would go back to teaching once my twin boys were in school. Now I’m applying for the Council of Parent Attorneys and Advocates Special Education Advocacy Training to become an advocacy expert. My number one priority in doing this training is ensuring Troy gets the education he needs and deserves, but I would also love to help other families along their journey. I’ve always wanted a job that serve others, and I’m proud to say that Troy has helped me continue on this career path in a new and surprising way.
5. Your vacations include meetings with your legislator or advocacy calls
#PureMichigan
We just spent a week in Michigan with family, and I really wanted to turn off all things advocacy. I was feeling disability advocacy fatigue big time, especially with the endless fight to #SaveMedicaid. I did a fairly good job of this with trips to the lake, shopping, and running a race with my mom. Still, I couldn’t help but call a fellow disability advocate friend to find out about an important advocacy meeting she had while I was gone.
Even my vacations have been planned around advocating for Troy. We coordinated a trip to see family in California with the National Down Syndrome Convention. I visited my favorite city, the District of Columbia, this past spring to advocate on Capitol Hill.
Of course, you can take a totally different path and still be your child’s best advocate.
I have friends who purposely disconnect from any disability-related advocacy efforts. I can respect and understand their choice to do so. In the end, it’s about loving your children for who they are and supporting their path to a life of self-determination and choice. There’s many ways to get there. Which path have you chosen? Tell me about it below.
Of all my children, I never would have guessed that the family book worm would be my child with Down syndrome. Troy has a special devotion to certain books. The sound of the words, the clues in each picture, the feel of the book, even the taste (LOL). He simply adores books and reading!
Troy reading his FAVORITE book
We all know that literacy opens doors to a life of learning and opportunities. Learning to read positively impacts learning in all subject areas, provides access to the curriculum, improves speech, and is essential to an independent life. But just a generation ago, it was believed children with Down syndrome could not learn to read.
Now we know that even the very youngest children with Down syndrome can learn literacy skills and almost all can be taught to read at a level essential for independently living. So, where do we start?
I use a combination of reading for pleasure with all my children, and some more focused literacy building developed specifically for children with Down syndrome. By the way, I use these specially developed programs for my typical kids too.
Troy really enjoys Orange County’s Online Learning Program, and it’s completely free with a guest login. You print off books that your child might enjoy. Watch Troy read his favorite LP book, “Sports.”
Like most early literacy programs, this approach focuses on acquiring high interest and common sight words. Children with Down syndrome excel at the visual memory skills needed for reading sight words.
Obviously, Troy just memorized this book, but he also shows comprehension later with a matching game. Watch below.
The beauty of this approach is that you can start even before your child is verbal. They can match picture to picture, they can use sign language, or you can read and they can point to the words.
Sue Buckley’s Down Syndrome Education Online uses a similar approach. Both programs start with a whole word approach, build vocabulary through pictures, memorize sight words and use them in sentences, and eventually introduce phonics and sound blends.
It may seem intimidating to teach your child with Down syndrome to read, but really there’s only 5 simple steps:
Match: either picture to picture or word to word, which I did with Troy from about 2 to 4-years-old
Select: give you child a choice between 2 pictures or words and ask them to choose the right picture or word
Name: hold flash cards of either pictures or words and have your child name or sign them
Check: for comprehension by matching picture to word, draw a line from picture to word, or make generalizations in the real world (example: read the zoo book, then visit the zoo)
After doing the Easy Readers with Troy for the past three years, we’re now slowly moving on to building sentences. Troy has great sentence awareness. He can show me the front and back cover, and even say the author and illustrator of his favorite books.
Now I’m trying to get Troy interested in building sentences by creating his own book, which his typical twin brother already loves.
Buy some blank books at Target in the dollar section
I found these awesome blank books in the dollar section of Target. Then we print out pictures of a favorite topic like superheroes, Paw Patrol, or family members.
After gluing a picture on a page we come up with a simple sentence to correspond with the picture. I write the sentence on a strip of paper and cut each individual word. The boys glue on each word in the correct order and we add punctuation at the end. Then we read our books.
This is a hard skill for Troy, because he can’t verbalize a novel sentence by himself, or sit through the creation of an entire book. But we’re starting small by giving him a choice between 2 or 3 pictures in one sitting, and helping him come up with the sentence. The point is to keep him interested, while understanding the structure of a sentence.
My twin boys falling asleep to a good book each night
I love this approach and have used both program’s apps on our iPad. Troy loves them too. The apps include: VisualLearn, Special Words, and See and Learn.
If your child is past this stage check out my dear friend’s blog, Sassy Southern Gal, for advice on more advanced readers.
What works for you and your child, and what’s challenging when it comes to literacy? Let me know below.
Guest blogger, Geralyn Spiesz, shares her thought-provoking journey of homeschooling her son with Down syndrome:
Geralyn with her son, Lucas
In some ways I feel as if I have always been a homeschooler.
My eldest son had an insatiable desire for more information, so evenings and weekends were spent reading, trips to the library, projects, and museums. My next son followed suit and although he did well at school, I couldn’t help notice his interests were not in the books but in experiences. We spent time doing all sorts of things to augment time spent sitting and listening in a classroom.
I was sold on the fact that I could teach my son to read at 1 year, since reading is sensory and not academic. I could create an environment where every movement he made, every intention he had, would result in success. I could get him to walk and crawl miles everyday to improve brain cross-patterning and speech. I did, and by age 3 it was clear to me that whatever we were doing was working. Lucas was growing, developing, learning, and was very happy!
The idea to homeschool started to take shape and I had a huge advantage. Lucas could already read, spell and count.
Lucas turned 4 on August 30 and I had decided that we would embark on our “Kindergarten homeschool year.” I had nothing to lose. He wasn’t old enough for real kindergarten. If it went horribly I could send him to school the following year.
I poured over homeschool books, blogs, and curriculum, but I never consulted the special needs resources. I figured, all children’s needs were special and homeschool is about tailored education. I just picked and chose materials that I knew would be a good fit.
So, that first trial year, I chose mostly 1st grade curriculum for reading and math. We also did interesting things from history, science, and lots of art and music. Lucas worked on handwriting, as well as his neurodevelopment program and running daily. By the end of that year it was absolutely clear this path was necessary.
I was worried and conflicted about things like socialization. But here’s the thing, inclusion for us is the goal not the method.
Lucas’s academic ability is high, but his processing ability requires improvement to allow him to sit in a classroom and listen. His ability to maintain attention and switch attention must improve before he can sit at the lunch table and follow a conversation. If I forewent teaching Lucas as I knew he needed in a distraction-free environment, while focusing on improving neurodevelopment, he would never truly be integrated into a class.
As an OT I realized that Lucas could certainly learn routines by being in a classroom. Things like staying in line, keeping hands to himself, following the leader, etc., were certainly very important, but when the questions morph from “What color is this?” in kindergarten, to “Why do you think the artist chose that color?” In 3rd grade, the wheels would fall off the cart. Not because he couldn’t learn, but because he wasn’t neurologically ready for that level yet. It would have been like putting a 3-year-old in 3rd grade. I could not sacrifice a relatively good academic trajectory waiting for his visual and auditory attention and processing to improve.
When the year passed Lucas could handily complete all of the 1st grade work (he was not yet 5). But he still bolted away from me at the supermarket and was not able to attend in a busy environment, further solidifying my decision to homeschool. It would allow me the ability to continue teaching him academics and work on neurodevelopment.
Socialization happens in tons of places.
At parks, at the the grocery store, at home within the family unit, at parties, etc. Socialization is exposure and opportunity. Lucas takes skating lessons, and plays baseball for the town. He is at the park most days of the week and has a huge extended family.
In addition, Lucas attends a learning center for homeschool families twice a week where he takes science lab, Latin, history, and literature. I attend his groups with him as he still is unable to learn in an auditory environment, although we are making progress!
At the time I made the decision to begin homeschooling, I would have been fooling myself to think that my son was neurologically wired for a same-age peer relationship.
Lucas with his older brother, who’s also homeschooled.
Homeschooling with Lucas went so incredibly well, that I pulled my middle son (the one who couldn’t sit still…had a ton of energy…and asked a million questions) out of school and homeschooled him as well. He went from barely proficient in math on the fourth grade standardized test to the 98th %ile the following year. Turns out he was bored. I chose a very aggressive math curriculum that goes quickly, with repetition built in, and he took off. He is going into 8th grade and this will be our last year of homeschooling. He will go to the same high school as his older brother. He needed to learn the way he was wired to learn, the same is true for all children with or without an extra chromosome.
Lucas and I work very hard in school and his neurodevelopment program. He is just finishing 3rd grade. In some areas he is working at a late 4th grade level, and others at a late second grade level. If we’re honest, this this actually pretty typical of all of us. we are really good at some things and some things take more effort.
Our goal is to homeschool until 8th grade and for Lucas to sit for the entrance exam to the same private high school his brothers attend.
We would like to see him graduate with an academic diploma. We want Lucas to have neurodevelopment to understand sarcasm at the lunch table, and attend to the ping ponging conversation in a noisy cafeteria. Our goal is for him to learn by listening to a lecture instead of having everything in print for him to read. We want him to be happy and achieve all he can to do all he wishes.
The decision to homeschool a child is massive and it’s effects should not be underestimated.
I worry when it takes a long time to get a concept. But I’m getting better at realizing it isn’t Lucas’s inability to learn, it is my inability to teach it using the right method and I need to change my approach. This would not be possible in a classroom situation with multiple children. I also realize that at some point in the future we may have to make a different decision, but for now we wouldn’t change a thing.
Geralyn Spiesz is a passionate homeschooler who created the Facebook page “DSAP Homeschool,” which provides discussion and resources about homeschooling children with Down syndrome. She uses Dr. JoQueta Handy’s Brilliant Learning Program as a framework for her son, Lucas’ learning.
I could write a book about this. Evie’s had 7 sleep studies. Her first was at 11 months, because they were trying to rule out pulmonary pressure issues before doing heart surgery. She had mild apnea then.
I’m holding on because, yes, she does wear it on average 7 hours a night, but that’s only because I’m in her room 5-8 times a night at least putting the mask back on. She lets me put it back on, but man is this lack of sleep going to get old someday soon. And I’ve definitely considered other options like orthodontic pieces and the surgeries they really wanted to do when she wasn’t wearing her CPAP more than 2 hours.
