Wednesday, September 7, 2011

When "Back to School" Is Different

Another school year greets our family. It is the first time all my girls will be in school. They have clean, brand new backpacks, and their school supplies are neatly organized. They stand by the front door ready for me to snap a picture.

Ellie is ready to conquer the world. The smile she wears and the hop in her step are evidence of her self-confidence. I see that, even in her picture.

Nina smiles, but I see the nervous way in which she holds on to her walker. Her knees seem a little unstable today. She has been to her school before. She has met her teacher, her aides and every single therapist that will work with her. We spent time in her classroom making sure that she could get around in her walker or wheelchair. She has a cute special chair for extra support when sitting at the table, and one for sitting on the floor. We made sure that the right adaptive equipment was available so she could use the bathroom as independently as possible. Yet, her picture reveals that despite all the help she will get, the challenges that her body and mind will face at school because of Cerebral Palsy are scary when you are only 5 years old. I know there are other kids that are shy, or that feel very nervous. I know other children ask to go home or cry and cling to their parents. I get that, but this is different.

Nichole refuses to have her picture taken. She is angry. Angry that we have changed her routine. She does not want to go to school and demands to go inside the house again. She holds on to her cup of milk, her bowl of crackers, and the cover of one of her favorite shows while she cries in protest as we buckle her in the car. I wish she had the words to tell me how she feels. Even more than that, it makes me sad to think that she will not be able to tell me about her day when she returns home. If I could change one thing about how Down syndrome affects Nichole, it would be her speech. I know that other kids don't want to go to school. I know they too throw fits and kick and pout about it. I get that, but this is different.

My husband Andy and I take the girls to school. As we walk out the door, I want to cry. I know many moms cry too, I get that. But this is different. Two of my children have special needs. The complexities of their schooling careers are hard even for me to understand at times. I hold on to their potential, and to the fact that just like their big sister, my 2 “special” children also will shine, and pray that their classmates and teachers will see their light too.


  1. I'll pray for that too! Have a great back-to-school experience!

  2. Anonymous8:05 PM

    Bless their hearts :)

  3. I hope you can find some peace in the leap of faith you took when you left your two little girls at school. As the person on the other side of the door, who welcomes little people into that new school world, I can only speak for myself. I always love most the ones that struggle the hardest.

  4. Someday Nichole will be able to tell you about her day. She actually talks better than Angela did at that age. (At 4 Angela only signed, and had just a couple of words.) By about the end of 1st grade Angela was starting to tell me snippets of her day. The communication notebook is your lifeline right now. You can teach Nichole to talk about her day by using the details from the notes her teacher writes. "Did Bobby bring a birthday treat today? Did he bring cupcakes or a sucker?" (giving her an opportunity to answer a question.) "You painted on the easel today. What was on your picture?" It will happen. Eventually it will happen. As far as her being resistant to change in her routine, I would encourage you to change up her routine often! Some kids with DS are very prone to becoming homebodies just because it means they can stay on their routine. My friend's daughter will isolate herself from the whole world if it means sticking with her routine. Angela will do this too and it always catches me off guard. Some kids have to learn that being out and about is FUN! Another thing we learned with Angela: Doing something ONCE is a habit. LOL So if there is something I do not want to become a habit (such as carrying a certain item with her, or letting her fall asleep on the couch on a Friday night) then I can't even let her do it ONCE because it's going to be an argument when I don't want her to do it. It's frustrating, and means thinking way too far ahead sometimes.


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