Tuesday, July 7, 2015

The same...but different

This post is one out of my comfort zone as far as sharing with the world.  But it is something I have rolling around in my head. A lot. What a way to start a post, huh? But I also know that the beauty of the internet is that is can help us feel connected...not so alone in our feelings and emotions. And maybe, there are other special needs parents out there who have the same thoughts.

A couple weeks old
Our first child, Alaina Marie, entered the world on September 11th, 2008. She will be seven this year. Seven. Wow. When she entered the world she had her own little surprise to share with us. The presence of a 47th chromosome. Down syndrome. To say we were shocked is an understatement. I ran the gamut of emotions. And still do - although the highest highs and lowest lows don't seem quite as steep anymore. Most days I feel like I'm on a roller coaster with the little hills - the ones that just barely lift you off your seat and make your tummy feel funny. The first few weeks, months, maybe even years, after she was born we were taking some serious drops, people. When you couple the unexpected with no real world knowledge of what we were facing, an imagination (and the internet in this case) are your worst enemy.

One statement in general that I think about very often is the mantra in the special needs community of, "My child is no different than any other child." Some pound their fist at organizers of activities or at IEP meetings - demanding equality in whatever way that looks in their head. Followed by "they have the same emotions, they just want a chance, they want to be loved and have a happy life." I will never, ever disagree with those last thoughts! We're all people and deep down inside we do wanted to be treated the same. But I sometimes stand back and wonder how I can utter these words - because I have before. More as a reflex. I think we get used to our talking points and this may be one that's in a lot of special needs parent's arsenals. And it's true in many ways, our Alaina isn't any different from her peers. She loves to have fun and play. She likes to learn and be involved. She loves to please people and thrives off of praise. She gets mad when her brother and sister take something of hers. She gets mad at me when I won't let her have her way. She loves to laugh and give hugs. All things that any other kid experiences.

For me??
But I also look at our life the past almost 7 years. My life with this beautiful child has taken a much different path than most other parents have travelled with their kids. We are different.

When you have family - beyond blood and closest friends(yes, they feel like family to me because many of them I have spent more time with in the past 7 years than some of my family members) and they are called special ed teachers, physical therapists, speech therapists, occupational therapists and doctors. We are different.

I see you!
When we spend our summers possibly busier than our school year to continue to help her reach her full potential by driving an hour and a half for physical therapy, occupational therapy and speech therapy. We do hippotherapy once a week (that is animal therapy - horses to be exact.) I have persuaded two angels to tutor Alaina this summer also to help her maintain her level of work as when she left on the last day of school. And this on top of all her regular kid activities. Gymnastics, swimming lessons, tball. And that leaves me and all the kids beyond exhausted - because these are things that I feel are non negotiable as a stepping stone to helping her become all she has the potential to be - not because I find it fun to fill our schedule with all these things. We are different.

To structure and plan her days for her. Being allowed by our wonderful school, we can have a say in what teacher we would like to see her with. What students would be most beneficial to have in class with her. Those are luxuries a lot of other parents don't always get. That was made clear to me this spring while going through the process of sending my second child to kindergarten round up. I felt wildly out of control of her whole situation. Not knowing who her teacher will be til registration in August...not knowing who will be in her class. This is how it is for most parents. But I wasn't used to it. We are different.

She loves being a big sister
Knowing Alaina is capable of learning the same concepts as her peers. Doing equivalent work. Equivalent.....modified....adapted work. And that lies mostly on the teachers shoulders  - along with our input of course(but thanks be to God we have an amazing, amazing team for her at school and outside of school) to make the changes necessary to give her a chance to be on an even playing field with her classmates. And I'm SO grateful for this....make no mistake. But it is different.

I have the pleasure of knowing some really phenomenal mothers in my part of the state, and all over the country really, with the connections we can make through the internet - who also have kiddos with 47 chromosomes. Our conversations at some points are no different than any other group of moms sitting around talking - and sometimes you would not imagine the conversations we have and the things we deal with and talk about. We are different.



This is what happens when sisters get a hold of mom's phone
As well meaning as they were, I still remember the day sitting on this same couch I'm sitting on now, listening to a social worker gush about the new director they had and all the wonderful opportunities they were creating for jobs for special needs individuals. How encouraging....but wait for it....at the landfill. Ouch. I'm guessing not many parents can say someone has sat with them touting their kids chance at having a job at the landfill - as a positive thing. I still remember trying to hold back tears and continue on with the conversation after that. (Just a plug - creating good, meaningful jobs for individuals with special needs is a huge area of improvement we as a society need to make.) We are different.

I know Alaina is smart as a whip. And so intuitive....but I sit and worry about if she will be able to read and write well enough to function independently. I don't doubt her, but it is a realistic thought. While parents worry about the choices their kids make and the things they do growing up, most parents don't give a second thought to developmental milestones and what it could mean for their child's future because it just happens for their kids. I see it with my own. Lots and lots of things we have had to teach Alaina, Aubrey and Wesley have simply learned on their own. I have always been amazed at how easily and quickly things come for them. It is different.


To be having a conversation about planning out your child's future and establishing a special needs trust and thinking about who will look after your child if, God forbid, something would happen to us. She will need care and supervision far beyond what our other kids will need. Writing a letter of intent for her needs and wants as we do not know if she will be able to accurately convey them to someone if we are gone. We are different.

To be told we need to start thinking about where our child would like to live and getting their name on lists when they are 14, 15 years old. Hopefully making those decisions with Alaina, but we don't know. When most kids are starting to think about what they want to be or where they want to go to school, or travel or live, we will be trying to decide if/where she will be trying to live independently or semi-independently, or continuing to live at home with us. We are different.


Remembering reading a story of a family who loved their child with Down syndrome to the moon and back, but they were a little sad that at 13, they had never really had a real conversation with their child. And being scared to death. And now, Alaina is almost 7, and I suppose I never really have had a conversation with my daughter. She uses broken phrases and it usually doesn't last more than 2-3 exchanges with many single word answers. It's not as scary or sad as I once envisioned when she was a baby, but sometimes it does make me sad if I think too hard about it. When I have so many stories about cute things our other kids say and I realize that would be a missing part of her baby book....it's not bad, but it is different.

I DO NOT say all this as an attempt to gain pity. Not at all. AT ALL. We have no need for that. This space is for me to get out some of my thoughts and feelings I have rattling around in my head at times. And although many of these thoughts race through my head quite frequently, the days are few and far between that I really let them get to me. This is our life with Alaina. And she is worth it. So worth it. If you have met this child, you know how worth it it is. If you have seen her smile or had the pleasure of hearing her laugh, it's so worth it. I started thinking about this last night when I put her to bed. Out of the thousands of times I have told her I loved her, I can probably count on both hands the numbers of times I've gotten a concrete "love you mama" back. My heart melts when I hear it from any of my kids, but to hear it from Alaina in such an appropriate context, is well, indescribable. You celebrate all your kids, but the one thing I will always agree with is celebrating those milestone and little things is so much sweeter with a child with special needs. It is a unique view of the world that not everyone gets to experience. Some may think they don't want to experience it...but I can't imagine going through life not having been given this gift to see the value of life through a different lens. To know compassion like I never did before. And even though I have hard days from time to time, I'm so grateful. Grateful that she is ours.


So I will never sit at an IEP meeting and say "she's no different" when I am surrounded by a team of people who's job it is to modify her work, her environment, so it doesn't seem as different for her. I won't pretend that "she's no different" when I ask to stay at an activity that parents aren't supposed to stay at because our bathroom skills at almost 7 are not independent yet. That is different...from most other kids. From most other families. This different is hard sometimes, but also good. I just found I'm more ok with being different than I thought.


4 comments:

  1. You are a talented writer and an amazing advocate for your children. Thanks for sharing from the heart and serving as an inspiration to all parents! Keep the faith and embrace the different journey that God has given you.

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  2. This is really heartfelt Lauren! You have a strong and wonderful family.

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  3. Beautiful!! I am/was honored to be a part of your "team." Alaina is perfect in every Alaina way. Made just how God planned!! Love her and your family!

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