Transitions are Hard

I sit in my living room, which is now full of strangers, thinking that this has to be some nightmare that I will wake up from. I see Haley on the steps playing quietly by herself. Tears fill my eyes. Is this her life now? Will she have to sit on the sidelines while strangers come in our house and examine this baby?

I observe as they do test after test on my newborn. They move her arms and legs which instantly flop down. They make loud noises to see if she responds. They ask to watch her nurse to see if they can determine why she won’t latch. I was up all night with her trying desperately to get her to breastfeed. I am severely sleep deprived, and if I am honest, I am still in a state of shock. I cannot do this. Everyone keeps telling me that I can, but I am not sure I believe them. I feel utterly alone.

The therapists and coordinator leave after a couple hours with their recommendations for which therapies we need to begin. How can a newborn need therapy? Thank God, my cousin is here. She works in this field, and is familiar with the emotions I am experiencing. She tells me that this will become our new normal and that it won’t always feel this overwhelming. I still want to run out the door and never look back.

Fast forward to now. Those strangers I was talking about…. Well, they certainly are not strangers now. They have become a crucial part of our family. Our coordinator has been there for me since the day Sienna was born. She has provided resources, insight, and support at every turn. She has been a vital piece of our puzzle. She took the time to find the right therapists for Sienna. Not everyone was a great fit, and she assisted me patiently until I found the team that worked best for our family. And, oh what a team we have.

Imagine if someone visited your home on a weekly basis for over two years, with the intentions of helping your child. I don’t know if it is the therapists we have or the time they have spent in our home, but they are so important to our journey. They have been a support system for me. Sienna’s nutritionist was pretty much my therapist during that first year of Sienna’s life. I called and texted her so many times, and every time she responded immediately with a resource. I could not even tell you the amount of times she’s seen me cry. Then there’s our physical therapist. Every time she arrives at our home, Sienna’s face lights up with joy. This woman is one of her best friends.

Yesterday, our coordinator and physical therapist performed an evaluation on Sienna. It doesn’t seem so foreign anymore. In fact, my cousin was right….it has become our new normal. I expected this to just be another evaluation until our coordinator pulled out the Transition Handbook and started talking to me about Sienna transitioning out of Early Intervention and into the world of IEPs. An IEP is an Individualized Education Plan.

When Sienna turns 3, her EI services will be cut off. This is how it works. It is something that has terrified me for a long time. There will be a whole new set of challenges for us. I will have to fight for inclusion. I will have to fight for services. I will need to prepare a binder and insist that my child is seen as valuable. I will have to do all of this without the support team I have had in place since Sienna rocked my world.

This is me after Sienna’s evaluation yesterday.

When our coordinator mentioned it, a pang of fear hit me immediately. Again, eyes watering and tears flowing, but for completely different reasons. I cried at the idea of them being in my house examining my newborn baby and now I am crying at the idea of them leaving us. The irony is not lost on me. Until you have sat in my shoes, you have no idea how this feels.

I know I will tackle this new challenge and I will continue to advocate for my girl. I will learn all I need to in order to ensure her success, but I am still allowed to be sad and scared. Transitions aren’t just hard for kids.

“If you are successful, it is because somewhere, sometime, someone gave you a life or an idea that started you in the right direction. Remember also that you are indebted to life until you help some less fortunate person, just as you were helped.” -Melinda Gates

 

Continue Reading

Roadblocks

Today, I hit a small roadblock on my journey of advocacy for Sienna. If I am honest, these moments can set me back. My roadblock came in the form of an adorable little girl who had a perfectly normal question for a kid to have. She saw me walking Sienna and stopped. She looked up at me and said, “Why do her eyes look that way?” I responded by telling her that her eyes were shaped like almonds, because she has something called Down syndrome. She stared at her some more and then walked away. Haley was with me and she looked up at me and said, “I think Sienna’s eyes are pretty.” My eyes began to water as I responded, “Me too, baby. Me too.”

It doesn’t seem like much of an altercation, but it took me back to a moment last year when a little boy approached Sienna and I and asked why she looked like an alien. This was a little boy I had to see at a weekly activity. He called Sienna an alien baby quite a few times. At the time, I wasn’t strong enough to approach his mom or even correct him. I just ignored it, which I still beat myself up over.

Moments like these knock the air out of you as a mother. You know your child is beautiful, but the world only sees something different. I will not always be able to protect my girls from insensitive comments that come from others. It terrifies me. It’s inevitable that some day Sienna will be hurt by the ignorance of someone. I just hope when that happens she has enough self worth to know that she is a beautiful perfect person.

 

The only sense of control I have over Sienna’s future is to educate others on how to accept and welcome differences. Some days, I am Wonder Woman and I am ready to go into battle. Other days, the simplest comment can make my eyes water and send me into a puddle of tears. I know there will be challenges on this journey. It’s okay to have roadblock days. Tomorrow, I will wake up ready to take on the world for my girls again. I wouldn’t change Sienna for the world, but I will change the world for her.

“You may not always have a comfortable life and you will not always be able to solve all of the world’s problems at once, but don’t ever underestimate the importance you can have because history has shown us that courage can be contagious and hope can take on a life of its own.” – Michelle Obama

 

 

Continue Reading

Inclusion Matters for Sienna

Sienna is 2 years old and the differences between her and her typically developing peers are not obvious. She may not be walking, but from a developmental perspective, there isn’t much of a gap, yet. I have no doubt it will become more obvious over time, but I envision her future surrounded by friends of all abilities, much like it is now. We are blessed to have so many friends and family members that embrace Sienna for everything that makes her Sienna. I love watching her play with other children. I wish we could all be more like them. They are so accepting. If they have a question, they ask it. I love their honesty and purity.

Sienna in music class with two of her best pals, Susie and Ellen. Susie’s tshirt says My bestie is Downright awesome and Sienna’s shirt says More Alike than Different

Our goal for Sienna is to educate her in a mainstream setting with her peers. When I say peers, I mean other children. In my opinion, separate is never equal. Separate is separate. Equal is equal.

Children with Down syndrome are frequently asked to attend segregated programs for students with disabilities. More than 40 years after the federal government guaranteed the right of students with disabilities to a free and appropriate public education in the least restrictive environment, more than half of students who are classified as having an intellectual disability (typically the official special education designation for students with Down syndrome), are educated in classrooms segregated from their typically developing peers.

School officials often claim that attending a specialized school is in the student’s best interest.

Research suggests that this is not true. In fact, there is clear and consistent evidence that inclusive educational settings can offer benefits for students with and without disabilities. These inclusion-related differences can be substantial, with one study reporting that included students were approximately two and a half years ahead of their segregated peers on measures of expressive language and more than three years ahead in reading, writing, and literacy skills. In addition, included students with intellectual disabilities were nearly twice as likely as their non-included peers to enroll in some form of post-secondary education.

There is also evidence that participating in inclusive settings can yield social and emotional benefits for students with disabilities. Such social and emotional benefits can include forming and maintaining positive peer relationships, which have important implications for a child’s learning and psychological development.

Despite the clear evidence of the benefits of inclusive educational placements for students with Down syndrome, it’s possible that some parents may fear that inclusion will impede the development of their typically developing children. Again, research suggests otherwise.

In fact, in some cases inclusion may bolster the social and emotional development of typically developing students. One research study suggested that middle school students attending inclusive schools demonstrated less prejudiced, patronizing, or pitying behaviors toward students with Down syndrome. Another research study found that students who are educated in inclusive classrooms have more friendships and higher levels of peer acceptance than similar students in non-inclusive classrooms.

Sienna and another one of her accepting buddies, Ruby.

Sienna has the right to an inclusive environment. It’s what is best for her future, and moreover there are benefits to her typically developing peers. Don’t we want a world that fosters patience, love, and understanding?

My inspirational quote today comes from one of my favorites, Mr. Rogers.

“Love is at the root at everything, all learning, all relationships, love or the lack of it.” -Fred Rogers

 

 

Continue Reading