Monday, October 13, 2014

October- Down Syndrome Awareness Month

It's Down Syndrome Awareness Month. I've been posting daily on Instagram/Facebook/Twitter with some things we've learned. 
Day #1: It's October! Down syndrome awareness month. We celebrate this month in our home, because of the amazing things Down syndrome has brought to us. I'll be doing my post a day about Down syndrome each day in October, as I have in years past. I think our experiences can help others understand that #morealikethandifferent is real. We all advocate in our own ways. But even at two, Porter is his own advocate- letting us know when he wants to be more included. This morning, he visited Penny's classroom. They wore their matching shirts. We danced with her friends, as we do most mornings (seriously- I walk in the room and twenty four year olds yell "do the dance"...we started dancing at drop off and pick up when Porter was just a baby and they all love it). This morning, twenty four year olds surrounded my boy with love, each taking their turn to pat his head, give him a hug or high five him. There are twenty four year olds who notice his orthotics and feel comfortable asking me questions about things they see as differences. There are twenty four year olds who are understanding acceptance because of Porter. I hope that when those twenty four year olds spread their wings in kindergarten next fall, they'll see that kid who is a little different and will greet them with open hearts, minds and arms. 
Day #2: In our house, toys are therapy tools. The train table was a major incentive to pull to stand and then take side steps. The grocery store helps us learn numbers in the standing position. We work hard to keep his core active- he likes to rest his belly against things at times because it's less work. We try to make gross and fine motor play as fun as it can be. And we find most of these items at thrift stores and consignment sales. We think about play a lot more than we did when Penny was two! 
Day #3: Sensory play...something I didn't give much thought to before Porter's arrival. But, sensory play is a huge part of our Fridays. Good old finger paint is our go-to, but we try to incorporate science concepts whenever we can. Today we made "Halloween slime" with borax and Elmer's glue. It was fun but super messy (easier to clean up than I expected). Both kids got lots of sensory input from the weird consistency.
Day #4: Inclusion begins at home. Sure, it would be easier to make waffles without their help, but what is that teaching them? Even though he's two and not yet walking, Porter has jobs. He puts his clothes in the hamper every night, brushes his own teeth before we do a final cleaning, washes his body in the tub and puts some toys and books away. He wants to be included. He likes to measure and pour. Sometimes it's messy, but we're all learning, right?
Day #5: The community that we've become a part of is absolutely amazing! #chopbuddywalk 13 years strong! We've seriously met the most amazing people! #31for21 #downsyndromerocks
Day #6: Let's talk ears. People with Down syndrome may experience a certain degree of hearing loss. Their ears are lower set, lining up between their nose and mouth. Their Eustachian tubes are often narrow and may not drain properly. Fluid and pressure build up, making it difficult to hear. Ear infections recur. Tubes are often recommended. Porter is on his second set of tubes. He visits an audiologist regularly to have his hearing evaluated. We know he can hear at all frequencies, but we're not sure how well. We do believe he has some mild hearing loss in his left ear. Despite this, he is learning new words daily and talking and signing up a storm! 
Day #7: Let's talk. Seriously. Speech therapy started long before Porter said his first words. Because speech is so much more than words. It's things like "oral motor protocol" that we've worked on since birth to strengthen the muscles in Porter's jaw. It's lip closure. It's straws and horns and bubbles- fun activities designed to help him grow stronger and develop muscle and breath control that will help him talk. It's signing- eliminating frustration by giving him the means to communicate until he can. And finally, it is speaking. Annunciation. Stringing words into phrases. Understanding the W questions. Responding to open ended questions. Following two step directions. Setting him up for success. We are incredibly blessed to have met Miss Lori, our amazing speech therapist, early in our journey. She is Talk Tools trained and focuses on kiddos with Down syndrome. She LOVES our son. She fights for him! He is excelling because of her. We learn more every week.
Day #8: Routine. Porter thrives on it. Creating a routine helps him understand expectations. It helps him transition between activities. We have morning and bedtime routines. We incorporate therapy activities into our routine. Porter attends a typical daycare. They have been open to helping create routines within the school day, because most two year olds do crave structure and routine. Transition times between activities can be difficult for Porter and others with Down syndrome. It likely took him a bit longer to get started with an activity and it also takes him a bit longer to part with that activity. This can be seen as defiance or noncompliance, which can at times be problematic. In one extreme case, it resulted in the accidental asphyxiation of a man in a movie theater by two off duty police officers who deemed the man with Down syndrome to be defiant. They didn't understand the difficulties associated with times of transition. We've developed a behavior plan with Porter's team that we use to help with transition. We count backwards from five to one and repeat the transition command. Sometimes it takes one or two tries, but the consistent use of this countdown has really helped him understand what we expect. 
Day #9: It takes a village. We're not doing this alone. We have help from our families, friends, therapy teams who've become friends, neighbors and an extended family of people who love people with three copies of their 21st chromosome. We learn from every direction. Some days we need more help than others. Thanks to everyone who is part of our team! 
Day #10: Severe obstructive sleep apnea. It's a pretty scary thing. Porter, like many people with Down syndrome, has sleep apnea. He stops breathing and desaturates while asleep. Low muscle tone and anatomy (smaller airways and nasal passage ways) are the prime causes. Oxygen deprivation is no joke, especially for someone whose brain is already working a little harder to do everything. Last month, Porter had his tonsils and adenoids removed, which is step number one in the efforts to allow him to breathe more clearly while he sleeps. We will do a repeat sleep study in a few weeks to see if this makes a difference. There may be a C-PAP machine in our lives at some point in the future. Sleep science is fascinating. While they studied Porter during his initial sleep study, I learned a lot about his sleep cycles. As I suspected, his REM cycles are quite different (shorter, less frequent). there were periods of time he would sit up in bead and talk while fully asleep. He's been my sleeper since day one...we had to wake him to feed him as an infant. He slept through the night at six weeks. He's always slept better than his sister. He does toss and turn, but sleeps through it. I guess if it wasn't protocol, I wouldn't have worried too much about his sleep. But the Trisomy 21 Program at CHOP has amazing protocol that helps guide us. We'll continue to learn about how he sleeps and we'll do our best to ensure his brain gets the oxygen it needs to develop to its fullest potential.
Day #11: I don't think I need to tell you that his smile is contagious. Everywhere we go, he flashes that smile. A silent "please love me." Tonight it was some senior citizens at Panera, earlier today some people at a christening party. I watched him flirt and work a room like only he can. I know that he's still a cute baby and I know his smile melts hearts. But I also know that as he grows, his smile will become less effective. As he grows, the differences will become more apparent. And society may turn on this kid...I'm hopeful for his future. I'm also hopeful that the next time you see an adult who has an intellectual disability, you'll remember Porter's smile. And perhaps you'll smile back, take a minute to say hi and remember that they're just as much of a person who just as much wants to make personal connections with you. A smile can make all the difference. A smile can make someone's day! 
Day #12: 31 months and not yet walking. His progress is slow and steady. But people assume he is younger than his age because he's not walking. His school is hesitant to move him ahead in class because he's not walking. Gross motor is his #1 delay. His muscle tone is incredibly low (Apgar score at birth was 4...he was so floppy). His ankle joints are incredibly loose. I remember changing his diaper as an infant, worried I would pull his ankle joints out of the socket. I asked the pediatrician about his ankles at every visit, looking for ways to make them stronger. Out PT has worked on this joint from day one. We learned infant massage. He got his first set of sure steps around his first birthday to help promote proper alignment. But it's been super slow going. We understand the developmental importance of crawling- major necessity for fine motor development. And his belly off the floor crawl burst into our world around thanksgiving last year after months of army crawling. Even still, We started treadmill training as soon as he could handle it. We bribed him with eight minutes of Elmo to get it done. We have tried a walker, a baby stroller and everything in between. He currently uses a little tykes grocery cart. And in the past month, we've reached the point where he seems to want to walk, but his body is just not cooperating with what his mind wants. We can see the wheels turning- see him being so brave! We see him getting stronger. He will do it. And we will have a HUGE party to celebrate. He hits some milestones on time, without much fanfare. But those milestones we work extra hard to reach are met with extra celebration. Hope to be celebrating soon! 

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