I'm on a roll now! I think this will catch me up on the summer blog hop that my friend, Meriah coordinated. Today's topic is Challenges. I think this subject is more difficult for me than my letter to my younger self. I feel that the challenges of raising a child with Down syndrome goes in waves. It can be extremely difficult at times and just when we feel like you cannot take it any longer, the waves crests and glides you to shore and life balances out again.
I think a large factor in this is the birth order of your child with Ds.
Hailey is number 3. By the time she was born, I had a 7 year old and a
3 1/2 year old. Yes, they both reached milestones at different ages,
but they were still similar and close to the same. Actually with some
things, my second did mastered them earlier trying to keep up with his
big brother. Then along comes Hailey who is delayed. I had data and
memories to compare her development to. Sometimes that can be
overwhelming. It was hard watching her struggle with simple tasks that
her brothers seemed to master overnight or even in their sleep. I
didn't know how to break down the process of sitting up or standing for
her. Gross motor planning comes easy to most typical children.
Unfortunately, that is not always the case with a child with Down
syndrome. We needed to break down each milestone into a dozen or so
components. I am an impatient person...this makes Ds a challenge on
many days! It seemed every time I was ready to give up "she's not going
to every crawl, walk, etc.",she would make an advancement or meet her
milestone. Trust me, if I could will this child to master her
milestones, she would have been running at a year. Gross motor delays
are a huge challenge to accept early on. When you are out and about,
you see parents holding hands with their one year old while walking at
the park. You look at your child sheepishly knowing she has just
mastered crawling. No, in the grand scheme of life, it is not a big
deal, but in that moment, it is. Sometimes I find myself dealing with
jealousy over typical children because simple tasks come so easy to them
when Hailey had to struggle with each and every one of them.
As much as a challenge that gross motor was, it doesn't compare to the
intellectual side of things. I always "knew" that Hailey would crawl,
walk, run, etc. Intellectually there are no guarantees. I grew up
getting straight A's and graduating valedictorian of my high school
class. I attended college on a full ride scholarship because of those
grades. In short, I grew up...if you get good grades, you will go to
college and you will be successful. With that mentality, you look at a
child with developmental delays...how does that translate? It's hard
letting that go. When I say that to some people, I get a small
sympathetic smile followed with a "it will be ok". Really, is it your
child? No. You push your child to get good grades. I push my boys to
get good grades. It's hard to change that mentality to pushing for
progress and not perfect grades. Yes, I'm getting there, but it's hard.
It's difficult to hear children Hailey's age carry on full
conversations with their parents, recite their alphabets, count, etc.
Hailey is not there yet. She will get there some day, but we don't know
when. We don't know what her future holds. Will she attend a program
at a college? What will her dreams of her future be?
I've encountered other challenges that I never gave much thought about
before. When we received Hailey's diagnosis, I received a crash course
in terminology that I never heard or even knew existed. Medical terms
for her heart and Down syndrome, organizations I didn't know existed,
tests that needed run on Hailey that I didn't know anything about,
educational jargon that made my head spin. Even now, I feel like there
is so much I don't know that I need to know. Things that I am afraid
I'm going to miss with her that will cause her to be less successful in
The biggest challenge I am having being a parent to Hailey is the fear
that I am not enough. That I'm not a good enough parent. That I am not
a good enough teacher. That I haven't done enough research. That I
don't work with her enough. That I am going to short change her in some
way. Society will judge her based on her outward appearance, by her
speech, by her mannerisms, her reading and math skills. What if I don't do enough now. Will someone
think she is less of a person later? What if I don't do enough now...what happens when I am no longer around?
No matter what challenges arise with my little girl and her disability, I wouldn't trade her for anything in the world. All the challenges we have overcome thus far with Hailey pale in comparison to what we get in return.
Take a minute to read some of the other challenges below...