Monday, October 12, 2015

Day 7 The Importance of Therapy


Therapy. We eat, breath and live therapy. Occupational therapy. Physical therapy. Speech therapy.

The boys both get private and school therapy for OT and ST. Peter gets PT privately and through school. Kai doesnt really qualify for PT. He never really has. Kai's strong points are his motor skills. Even in ECI(6mos-3 years) he only received it once every 2 months. But Kai does get private PT. Our awesome insurance does not cover ST for Down syndrome. The policy specifically lists Down syndrome as something they do not provide ST for; even though speech is typically the area they have the most problem with due to low muscle tone(affecting the tongue).

Therapy is probably the single most important thing for children with Down syndrome.

I have a step-uncle with DS. He is either late 50s or early 60s. He has never had a day of therapy. He is non-verbal and 'low functioning.' He babbles and laughs a lot, but nothing anyone could ever decipher. Even after 10 years he remembered who I was. That was kind of awesome. He even came to the Buddy Walk with us 2 years ago. He deserves to be celebrated after leading a life of not being cherished.

Peter, our oldest son, did not start any therapies until 5 and a half years old. Why? Because we adopted him from a Ukrainian orphanage December 26th, 2011 and he became an American citizen January 12th, 2012. He had many health issues that had to be addressed prior to starting therapy. But we started it as soon as we could.

Kai started OT and PT at 6 weeks old. He had open heart surgery at 10 weeks old and resumed therapy at 12 weeks old.

So, my uncle is non-verbal(except non-sensical babbling and laughing) and very low functioning(not my term), not really potty trained but can perform basic skills of dressing himself. He needs assistance bathing properly and other hygienic needs. He seems happy and content with life, but I think with therapy he could have reached a much higher potential. But being born when he was, he was lucky that he even stayed with his family and not shipped to an institution. He is a happy guy :)

Uncle Keith

Peter. Peter is significantly globally delayed. Peter didnt start therapies until 5 years old. Peter spent most of his first 5 years in a crib because the orphanage thought he was very ill. And he was because they waited until he was 3 or 4 to do his open heart surgery. We arent sure when he had it. He had severe pulmonary hypertension. He was also 33-34 weeks premature. I have no idea if he received too little or too much oxygen during all of this. Both can cause damage to the brain. Peter has significant delays, as was expected. He was 5 years old and weighed 24 pounds when we brought him home. He wore 18 months size clothing.
It took about 2 years for Peter to start walking, at age 7. His legs were so stick thin with no muscle or fat on them at all. His feet pronated so badly that he basically was standing on his inner ankles. He did pick up about 5 or 6 words right away. Mama, Papa, Ball, eat and drink. But then he lost them. I guess due to motor skills emerging. He is partially potty trained(more so than Kai is), he will go if you take him but does not know to tell you he needs to go.
He can use an iphone and ipad quite well, but still eats crayons. Initially he ate pretty much anything because he had been starved so long, but he has become more discriminant with his food. He has yet to start any real academics in school; he is in 2nd grade. He can not complete a 3 piece puzzle because he throws the pieces. A lot of it is compulsive behavior. He has started a new medication that helps him sleep better and is supposed to help with compulsive behavior. It is not a CNS stimulant, those do not work for him, at all. It has helped tremendously with the throwing. I do believe that Peter will get to a point where we can work on more academic based work. We just work slow and steady. He's progressed SO much since he came home with us, so please dont misunderstand me. He is a resilient and amazing little boy. We are proud that he is our son.

Peter when we brought him home
5 years, 24 lbs

Progression pics

Kai started therapy at 6 weeks old. Kai still gets OT at home and school, ST at school and PT at home(which we are hanging onto with the skim of our teeth)
Kai has always been good with motor skills. He sat at 10 months. He crawled at 7 months, he cruised at 11 months and walked at 18-21 months.
Kai ate reallly well too. Kids with DS often struggle with feeding to the point of needing feeding tubes or buttons. He did great with a bottle and purees and was eager to start table foods. Then he started choking and vomiting table foods. He had a tongue tie. I asked them in the NICU if it needed to be clipped. They said No because he ate fine. I asked the pedi. Same answer. But as we started having trouble with table foods, I began to ask more doctors, like ENT, GI, feeding therapist, OT. All said No. It was because of the DS.

But this was one of those things that I 'knew' in only a way a mommy knows. Unfortunately with a diagnosis of DS, if it is an issue common with DS it is immediately chalked up to that with no further investigation. We started a new private therapy company that was an at home therapy. The OT originally only came for Peter because that was all her schedule would allow. We talked about Kai some and his feeding issues and my concern with his tongue tie. He was 5 and still eating eating Gerber Stage 2 purees! She said she would add him to her case load. Thank you Thank you Thank you Romo!

After about 5-7 months without making much progress, she agreed that the tongue was probably the issue. He could move his tongue laterally so he was not able to move food around in his mouth. The fact that he didnt talk at all or eat any solids kind of pointed to that too. So I scheduled an appt with an ENT. Not our ENT, she was on maternity leave. The ENT agreed it was a severe tongue tie and should be clipped, but she did not feel it would enhance his ability to eat or speak, those were cognitive delays.

Um, thank you. I didnt ask you for a neurological evaluation on my child, whom you have never met. I asked you to look at his tongue. So 3 months later he had surgery to have it clipped.  It turned out it was so severe that it was attached all the way to the tip of his tongue but over time he had stretched it which is why he could stick it out! That was definitely a mommy 20/20 hindsight moment. ALWAYS follow your intuition!

Within 2 weeks he was eating solid table foods. And within a month he start approximating and saying some words clearly.  Always listen to your inner voice and your child. Even if they are non-verbal, they can tell you so much in other ways.

But Kai having therapy so young facilitated him meeting his milestones in a reasonable timely manner and taught me how to help him with things like strengthening his core, not rocking back on his sacrum and so much more. We also have learned to greatly appreciate the small victories. We have celebrations for things most people take for granted, like eating his first piece of birthday cake when he turned 6.

So yes, early intervention and therapy make a HUGE difference in our children's over all physical and cognitive abilities. It lays groundwork for the future.

Day 6. Milestones and the First Two Years


Yes, I am 7 days behind on my 31 for 21. I debated on writing one post for all 7 days but I feel like that is cheating. It is kind of cheating that I am posting 7 in one day as it is.

Today, which is really last Tuesday, I want to talk about milestones.

After finding out Kai had Down syndrome at 18 weeks gestation, I threw away donated all of my parenting books I had bought and been giving. They no longer applied to me or my unborn son. Why read up on material that would not pertain to him? To disappoint me further? To make feel worse when he didnt meet milestones on the time table that Dr Sears or Spock or whoever he is says that he should? The one good thing was that he was my first baby, so I really had no idea when babies were supposed to be doing what at which age range.

So along came Kai on November 12th. I was instantly in love. He came home after a 10 day NICU stay due to possible infection. Although his culture did not grow anything they wanted to complete the 7 days of antibiotics because of his congenital heart defect.

ECI(Early Childhood Intervention) came out around 4 or 5 weeks to do an initial evaluation on him. We started OT and PT at six weeks. I loved ECI. They came to our home, so it was very convenient. If we had went with private therapy he would have probably received more sessions as ECI is government funded. But Kai progressed well, so I can't complain.

So here's the kicker. Our kids are born with essentially the same brain as a typical child. There are a few variations like being a bit smaller, but things like dendrites and neurological pathways, etc, are there. But around 5ish months, they begin to lose those things slowly. This is why most babies with Down syndrome (who do not have complex medical histories from the beginning) seem to meet milestone fairly on par with their typical peers. The noticeable differences start around 2 years of age. I learned this in an abrupt manner.

I had contacted a local group when I was pregnant and found out about Kai having DS and we met the family for dinner at a restaurant so we could meet their children, one of them having DS. It was a great meeting. Opened my eyes quite a bit. He was 5 and did a lot of typical things a 5 year old would do and interacted well with his family. So, after Kai was born we battled one of the common occurrences in children with DS, chronic fluid in the ears. He had his first set of ear tubes at 6 months old. On one of my many visits to the ENT office, I ran into the mom I had met for dinner. She had her son in tow and was leaving as we were waiting for our appointment. We chatted a bit and it was the first time she had seen Kai. She asked how he was. I told her he had already had his open heart surgery at 10 weeks due to congestive heart failure but he bounced back quickly. He was probably around 8-10 mos old at the time and I told her he was doing so well in therapy and he is not even behind on any milestones.

In a slightly irritating voice she told me, Yeah, they meet all their milestones pretty much on time until 2 years old. Then you will see bigger development and cognitive delays. The information was good to know; the way in which she delivered it was not. Ive met and helped many new families with babies with DS when I worked in the NICU and never would I say something like that to them in that tone. It was a tone of Yeah Yeah, I hear this BS all the time. Your kid isnt special. He will be behind and delayed just like every other kid with DS.

In that moment I was actually emotionally shattered. Because yeah, I did think maybe I hit the jackpot and Kai would be one of the ones with super mild delays. We all secretly want that. None of us want our kids to delayed, especially severely delayed. So my feelings were really hurt. Maybe she was having a bad day. Maybe the ENT gave her some not so good news. I dont know. I dont particularly hold it against her today, I just know I will never state it to a new mother that way.

I kind of feel like we are given those 2 years before the noticeable gaps so that we have time to adjust to having a baby/child with Down syndrome. We expect them to come out and be severely delayed, or just dont know what to expect, and then we see that they can and do learn with a little extra help and time. That allows us to focus more on them being our baby, our child, and not a project to work on day in and day out to try to keep them equal with their peers. It is like an adjustment period. It is still difficult when the development gaps become bigger and bigger, but by then you kind of expect it and you know that they will reach those milestones. 

In their own time.

Tuesday, October 6, 2015

Day 5 Please Don't Feel Sorry for Us


When I tell you that I have 2 boys with Down syndrome, please dont feel sorry for me or my family.
Both of them were very much wanted. And we knew that both of them had Down syndrome.

We found out at 18 weeks that Kai had Down syndrome. We chose Peter because he had Down syndrome and then flew halfway around the world to Ukraine to bring him home.

So please, dont feel sorry for us. There is no reason. Our family does the same activities as families with all typical children do.

Day 4 It's Just an Extra Chromosome


Really. That is all Down syndrome is. An extra chromosome. Many of us are probably walking around with a missing or extra chromosome here or there, but it doesnt affect us the same way DS affects our kiddos.

In 2000, researchers sat down and coded every gene that is found on the 21st chromosome. Those genes are what parts of the human body that can be affected. It can affect certain physical characteristics, like almond shape eyes, missing or small nasal bone and the ever cute Sandal Toe. It can affect different organs and muscles. Kids with DS have generally have low muscle tone all over. Does this mean they are weak? Heavens no. It takes 6-8 people to hold Kai down to draw blood. He is by no means weak. But when I pick up Kai or Peter, their bodies just melt into mine perfectly. Low muscle tone just attributes to some milestones that may take longer to reach until muscles, like core muscles, are strengthened.  Kids with DS have loose ligaments and joints. What does this do?

Means he can sleep like this

And he can be bundled like this

There are many other things it can affect from cognition and predisposition to certain illnesses. It does not mean your child will get all those illnesses, just a higher chance. Id love to go into it but Ive got to cook dinner for my 4 minions.

Saturday, October 3, 2015

Day 3 Yes, They go to School

#31for21 #DownSyndromeAwarenessMonth #October

I never thought I would really have to answer that question. I mean, really? It is 2015. I am sure you have seen the little school buses that are for children with disabilities, you know the one, and you know what you call it...That bus isnt just for kids in wheelchairs or walkers or whatever notion you might have in your head. And Im fairly certain that Kai might one day be able to ride the regular school bus. Shocking, I know. But for now he still needs the 5 point harness, so that is where he rides.

But yeah. I cant tell you how many times I have really been asked that.

Does he(they) go to school?

Um, yeah...

A special school?

Noooooo...he(they) go to the same public elementary as my daughter.

Wow! Really? That's great!

Yeah, its great. It's kind of the law. They can go pretty much anywhere your kid can go as a person. I thought all people knew this. I thought maybe people would know they attend public school but not realize that they had infiltrated into their kid's classroom. That I could more understand. Maybe because their kid doesnt come home talking about them, which to me shows progression. He is just another kid in their class.

They do spend different amounts of time in their Gen Ed class, as to be expected. Peter attends Gen Ed for specials, which are Library, PE, and Music, and he also attends art with them. Peter is still too disruptive to be in a general education classroom. It has little to nothing to do with how far behind he is academically. If he could sit quietly in a desk, he could probably go in a little more often for peer to peer interaction and exposure to educational material they are learning. But he would still spend most of his day in Life Skills(the special education classroom. Some places Life Skills and Special education classroom are 2 different things. Here, they are one in the same) with his awesome teacher and his awesome aides. Peter's 2nd grade teacher is pretty awesome and they have invited Peter down several times to the classroom this year already. He went for his All About Me bag I sent. The kids got to learn he was from Ukraine and that we adopted him. They learned about his heart and his heart surgery. They learned that we chose Peter because he has Down syndrome, that we wanted him. The teachers feel it is an important thing for the students to know, and so do I. They also invited him down to have applesauce when they made some in class. He had a great time! Most of his visits will be social/group activities in nature. That is what is appropriate for Peter at this time.

Peter and his Applesauce

Kai spends roughly half of his day in his Kindergarten Gen Ed classroom. He goes in for Calendar, snack time, Recess, Social Studies and Science, Reading, some Math and for Specials(PE, Music, Library) and Art. The rest of the time he spends in Life Skills. Life Skills is where he gets his academics taught to him, Reading, Writing, and Math, his therapies(Speech) and actual Life Skills like potty training(which we are doing awesome with! Thank you Ms Ruth), brushing teeth, washing hands, etc. This is what is appropriate for Kai at this time. I trust our team. They work well with us and have never denied me any request I have had for the boys. Of course, I dont go in asking for the ridiculous. Im not out to prove something by forcing full inclusion on both of them. It isnt appropriate for either one of them. I think eventually Kai will have full inclusion and that Peter will have more time in Gen Ed and actually learn academics. Slow and steady.

But yes, they do attend school. A regular school. They do school work. They get grades. They are walking out and about in the school. Other kids know them and love them and say Hi! and give High Fives and Fist Bumps.

Kai and the Lu at the FunRun

Peter walking to lunch

Kai's spelling tests

Day 2, A Day Late

#31for21 #DownSyndromeAwarenessMonth #October

So it is Day 3 of DSA month and I am already late writing my 2nd post just now. But I do have a good reason and it lends to my 2nd topic.

Yesterday I participated in a Zumba-thon to raise money and awareness for Breast Cancer Awareness. October is also Breast Cancer Awareness month, and pretty much everyone knows that. My grandmother and aunt passed away from breast cancer, so it is an important cause for me as well. We did 2 hours straight of Zumba and it was AMAZING! We had a pretty good turn out and an extra instructor that alternated with our instructor. I made the entire 2 hours without stopping. My toes started going a little numb towards the end, but whatever.

I had to arrive early because I offered our bouncy house and 10ft infaltable slide/pool thing so the kids would have something to do in those 2 hours, and we had to set it up. And then we were there until about 930 taking it all down. THAT was a pain. The slide/pool was still wet but we crammed it into the back of the minivan with much grunting and cursing. It's still there, hopefully not mildewing.

Here is the great group of ladies that was there last night

Which brings me to not letting Down syndrome define or dominate your life or your child's life. As parents we continuously say that the DS does not define our kids, and it doesnt. But it is a big part of our lives, in the sense of IEPs, therapies, doctor and specialist appointments, advocating and educating, in the beginning. In the beginning I ate, drank and slept DS. I was on a one mommy mission to make sure that he would reach milestones in the same time frame as his typical peers. I knew if I worked with him enough we could outrun or outsmart the DS. Thankfully it didnt take long for me to realize what I was doing was turning my baby into a project and I was missing out on him being a baby. I was letting Down syndrome define both he and I. Down syndrome is not something you can outrun or outsmart or give 500 supplements for to diminish or eradicate whichever parts of the body it chooses to affect, anymore than wearing colored contacts will permanently change your eye color. That is because DS is part of your genetic makeup, just like your eye or hair color. You can do things to cover up and change the color of those, but in the end, they are still really that color when you take out the lenses or your hair grows out. Once I realized that and started just enjoying him as a baby, my first baby, life became a whole lot sweeter. I didnt spend 5 hours a day trying to make him balance on a toy to sit up, instead I played with him with that toy. He would learn to sit up when he would learn. I could help facilitate that doing certain things with him but still play with him or interact with him as a mother and a baby. Soon it became second nature to position him this way or that without a thought, like learning how to Zumba. You do it enough it becomes automatic and you dont think about it. Slowly over time as the dr appointments lessened, milestones were being met, you dont see down syndrome every time you look at your child. You see your beautiful child. The one that looks just like his daddy. The fabulous little boy with blonde hair and blue eyes and a wicked grin. 

You still think of down syndrome here and there, but not the way you used too. It is just a part of your life. Yes, many of our friends are families with DS. Yes, we do lots of activities, etc with them. But I think most families hang out and do things together that have things in common, like soccer moms, tball moms, boy scout moms, etc. But we have friends that are typical families as well; we do have 2 typical children as well. But we are just a family with 4 kids. So after the realization that I didnt have to live every waking moment talking about DS, thinking about DS I began to live my life again. Of course things would be different with or without the DS, just becoming a mommy changes the things you do; activities, friends, etc...

And my boys certainly do not let DS define them. They are too worried about if the movie Im about to turn on is Toy Story, if the reason I went into the backyard was to set up the water slide or bounce house, Oh can I have the Kindle/iphone?, if I lay here on the stairs long enough Mom will forget about me and I wont have to take a bath tonight, if I hide behind this couch cushion she cant see me and I wont have to get dressed. Those all sound pretty typical to me for kids their age. If they dont let their DS define them, then neither should I, or anyone else for that matter. Every thing they do or can not do is not because they have DS. Every illness or quirk or personality trait is not because of their DS(although trying to get some Drs to see past that is pretty difficult). 

So yes, I went to my Zumba-thon last night to support another cause *gasp* (I know) and to participate in my number 1 favorite activity and to hang out with my friends. And you know what, not once did I think about Down syndrome.  That is until I got home after 11pm and realized I had not written this post!

So please, if you are a woman, go get your bewbs squished this month. I know Im looking forward to it!

Thursday, October 1, 2015

October is Down syndrome Awareness Month


Down syndrome changed our lives forever. It has taken me down a life path I never could have fathomed for myself. I have had life experiences that I could only imagine reading about. Some of them phenomenal. Some of them heart stopping.

Most of them breath taking.

Meet Kai.

Kai made me a mommy. Kai made me fierce. Kai first captivated my heart in a way I never knew was possible, instantly. Kai scared me. And he made me proud. But most importantly, Kai is teaching me. He wrapped his tiny hand around my finger and began guiding me down a path in my life that would have never been paved without him.

Meet Peter.

This is the second time I met Peter but our first real visit with Peter. Our first meeting was brief and a lot of other people were present and watching. This is the first time I held him and told him I loved him. We loved him. We were finally here to take him home. Peter showed me what survival looked like. Peter showed me what it was to keep living even when you didnt know what you were living for. As I held Peter, I realized how lucky we were to have found him. Not his luck, but ours. How this child had been overlooked for almost 5 years in a crib, in an orphanage in Ukraine, is beyond me. And by overlooked, I mean not one single family even inquired about him. His health history on the website scared people. It looked dismal, although it didnt translate well because even I had no idea what some of his medical diagnosis were, there was a lot of misinformation.

I didnt know any of his supposed medical history when I first looked into his eyes that very early morning in bed, opening an email from my very very close friend, Christie McGregor, that had his picture and desperate plea from her to all the people she had sent it too. A plea searching for his forever family. I knew what it was before I opened it and normally I wouldnt have opened it. We planned to adopt a child with Down syndrome internationally when we were done having biological children, so I stopped looking at children in Eastern Europe that needed homes. It made me sad to see them all, so I couldnt look. And then, there he was. The only way I will ever be able to describe how I felt when I opened that email and saw Peter's picture is it was like seeing my child in a very crowded mall across the way, but knowing without seeing all the details that it was most certainly my child.

That is what Peter needed to find his forever family, his parents. He needed someone to see his picture, look into those eyes without reading those details, and know without a doubt that he was their child. And that is exactly what happened. I gently shook my husband next to me in bed and told him, I found him. I found our son. Its time to adopt. He didnt say a word but I knew he trusted and understood what I had said on a level only he and I can understand. The next morning we got up and I contacted the site Peter was listed on and got the ball rolling to commit to and start the adoption process. We never discussed it. I know that sounds odd or foolish to some. But it was just what we were supposed to be doing and there was no reason to be talking about it; we understood that in a way I cant really convey to you. But it is how our relationship works.

Peter had a stronghold over my heart I can never explain. He had a tight grip on it before we even met him, but my love and attachment as a mother to him was instant. I dont know if that is the norm but I assume not since it isnt always the case even with biological children. A lot of times there are emotional expectations that arent met and just plain 'this isnt what I thought it would be like' situations. Our love for him was tested in a way I never expected, even before the picture above, and we fought for him like I have never fought for something before. I fought in a way I didnt know existed in me. We stood up against forces much larger and ominous than one could imagine. We fought for him in a place where we had no ground or foothold. We were sure we had lost him.

But we had not.

I dont know still why we didnt. It does not mean there was not a casualty in the fight. There was. A little boy we will never forget, never forget how it felt to hold him that one time, thankful we were able to tell him that one time that we loved him(not knowing it would be the one and only times). At least we know that he will have been told that once in his lifetime.

Peter changed us. Ty changed us. Ukraine most certainly changed us. Although the circumstances/outcomes at the time were hard and still not understood, we have definitely become people that are changed forever.

People often tell us we are this, we are that, we saved his life, they are so lucky...and we do appreciate the words...but you really do have it all wrong. That is not how any of it is. They have made us what we are. They have enriched our lives. They have taught us that the mundane really isnt, that the expected should be celebrated, that taking things for granted should never be.
They have taught me to keep doing something until I learn it without giving up, without complaining. If you keep at it, you will achieve it. I have learned to celebrate the minutiae. I have learned to keep trying to succeed or master something simply for the act of doing it. I have learned to be proud of everything I do. And unconditionally proud of them, without apology.

And within them, I found my passion.