Monday, October 12, 2015

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.

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