Dear Tessa: Sensory Adversity

Dear Tessa,

Since the beginning of this page I have been open, honest and candid about your life and all that you have endured and overcome. I promised that I would be. Sometimes it is not easy, but I share anyway because this is your reality and our’s too.

As open and honest as I am about it all, there are things I leave out…because I can. I do keep in mind that it was my idea to create this space and that you did not have a say in that, so I honor and respect some of the difficult parts of your life and leave those details out. After all, what happens on the internet is permanent and it would not be fair, nor respectful of you, for me to share less favorable things you go through personally that you will inherit from this page down the road. Plus, we just need to keep some things private as well…as your parent, I have that right.

For instance, I talk vaguely talk about your sensory issues here; and I choose not to go into great detail about them. We constantly support your needs and are still learning to navigate these hurdles as they come. It is difficult because many people do not understand this or have not witnessed it first hand, but we do regularly. And I will tell you that there have been dark moments and low points throughout this process…moments that have tore my heart to pieces…moments that are private and humbling. There have also been powerful moments that painted big, beautiful pictures of success. Therefore when you overcome great adversity with your sensory related issues, it makes the reward that much sweeter.

Leading up to those moments, however, is hard for us because sometimes we knowingly prepare for things to not work out–we have to and we have accepted that. Your specialty therapist told us that it is a part of the process. But please…don’t ever mistake any of that for a lack of confidence in you. Of all people, your parents–who have walked every winding road right alongside of you–would be the last people to not believe in your abilities or successes.  I don’t expect anyone to understand what any of that is like for you and us unless of course, they have been in your/our shoes. And you know what? That is totally fine.

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I just want to show you this from your school winter program a few weeks ago in December.  We were gearing up for your concert at home hours before the program started, and your teachers had been practicing with you in the weeks leading up to it.  We all knew that there was potential for the chaos of the program to be too overwhelming for you, but I held onto to hope that you could do it.

At first, you sat on your teacher’s lap comfortably.  I kept thinking to myself, “This is okay.  As long as she is comfy and she doesn’t have a breakdown, I am okay with this.”  And I would have been, but in the back of my head I was like, “Come on Tessa.  Come on Tessa…You can do it.   Stand up babe.”  I wanted it so badly for you…and for me too.

Then you did it.  Your teacher stood you up off of her lap and you jumped right in the middle of a song, singing and dancing along with your peers and the music.

And girl…did you ever rock that winter program!

This is what we hold onto.  These perfect moments and how it feels to be a part of them, knowing what it took for you to get there.

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So while we welcome all possible outcomes to any scenario, we always encourage you, support you and believe in you.

You have been working really hard lately, and we are super proud of you.  Keep up the good work girlfriend!

Love, Mom.

The Parent’s Guide To Down Syndrome – Book Review

The Parent’s Guide To Down Syndrome:  Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis Through Adulthood is a hot-off-the-press book written by Jen Jacob (author, co-founder of the Down Syndrome Diagnosis Network and mom to a son with Down syndrome) and Mardra Sikora (author, writer, advocate and mom to a son with Down syndrome who is also an author).

Full disclosure:  I received a free copy of this book and have agreed to read and review this book based on my opinion without compensation.

If I go back to the moment when Tessa was placed in my arms for the very first time, I noticed that something about my daughter was different than I was expecting but could not figure it out.  She was my first-born child and I was just 24 years old.  She had a rough delivery, and her face was swollen.  Her nose was so small, her eyes were slightly upturned and almond-shaped.  When she cried, her facial expression caught my attention.  I told my husband that I could not tell who’s features she had.  “She doesn’t look like either of us,” I said to him.

Because of her dramatic delivery, there were many medical professionals in the room after she made her grand debut. While we agreed she looked different, we were not concerned.  Nor were we even close to prepared for what came next.

Our doctor had everyone leave the room, and said that there was something she needed to tell us.  Even then, there was nothing alarming on my radar.  “I am over ninety percent sure your daughter has Down syndrome.  She is exhibiting the typical traits associated with Down syndrome.” (Read her full birth story here.)

While my husband and I were clearly caught off guard, our doctor sat with us and talked with us about the surprise extra chromosome she was certain my daughter had.  We were shocked and maybe even a little upset that she would suggest that our perfect and beautiful baby had it–as though that suggestion alone lessened her in some way.  Then she said, “Remember what you told me?  You said at twenty weeks that you did not want any testing because it would not matter.  That you would keep your child anyway, all things welcome.”  She was right. We did say that and we absolutely meant it.  Except we never considered or accepted that this could happen to a “young couple like us.” A rationale that proved how very little we actually knew about Down syndrome at that time.

What I knew about Down syndrome at the time of her birth was stereotypical; therefore the diagnosis crushed me.  Even though our doctor provided us with good resources to start with and delivered her diagnosis positively, we were still very alone.  I was desperate for support from families of children or adults with Down syndrome.  I just wanted to hear from them what their lives were like.  I wanted real-life stories and testaments from those who had been there; anything that would tell me we would be okay.

“She is going to be great.  She will live a very normal life and you will, too.  I promise.”  That was the parting statement from our doctor after that heavy diagnosis conversation.

My doctor was right.  We are living a good and normal life and our girl sure is great.

We went through motions and we healed.  Looking back, I remember feeling guilty about saying things or feeling certain things because of my general lack of knowledge about what it meant for my child to have Down syndrome.  I started researching on my own, only to be discouraged by Google’s shortcomings.  So we read through books and pamphlets and I joined Down syndrome groups online or locally; soaking up any information I could.  What I did not know once before, I learned in time through personal experience, advice from others, and books–although none as good as this.
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The Parent’s Guide To Down Syndrome would have been a huge lifeline for me had it been around in 2010.  Luckily for me, there is still a ton of great information in it that I already have bookmarked for different parts of my daughter’s life.  The book covers diagnosis through adulthood, highlighting everything along the way.  It is reader-friendly by allowing readers to skip parts that may not pertain to their situation at that time. Readers can also jump across various topics without getting lost in transition.  My favorite part(s) of the book are the real stories as told by parents of children with Down syndrome.  Real emotions, unique stories and honest perspective all contribute to the fact that each child is different and that we are all just going through the motions of parenthood one day at a time.  We are all in this together, and no parent has to do it alone.

This book also offers current and accurate information about Down syndrome as well as the best resources available to support families and children; covering everything from early intervention to milestones in childhood to numerous health-related issues to IEP’s to school transitions, independence, employment and other matters of adulthood.

The Parent’s Guide To Down Syndrome is a definite must-have for parents who have just received a Down syndrome diagnosis, but is also great for anyone post-diagnosis.  It is informative without being overwhelming.  This book offers an honest glimpse into life with Down syndrome, while honoring the fact that each person is unique with their own attributes; and reminds us that when supported and nurtured, a child with Down syndrome will have the chance to grow and thrive–a sentiment shared by parents of all kinds.

A book like this will impact many families now and in the future, and I will absolutely recommend it.

Plus, there is a little excerpt from yours truly about sibling relationships. 🙂

How can you get a copy for yourself?

Amazon

Barnes & Noble 

Author website

Indie Bound Booksellers

Enter for a chance to win below!

*First chance:  Just leave a (positive) comment below and automatically be entered to win a free copy of The Parent’s Guide To Down Syndrome.

*Second chance:  GRAND PRIZE – Includes an “I love someone with Down syndrome” tote, fun stickers, a registration to this year’s 321eConference, other book resources, and of course, a copy of The Parent’s Guide to Down Syndrome. (For those who have already purchased the book, this second copy would be a great donation to your local library, your DSA library, or another mom, dad, or friend.) This resource package has a value of over $200! Follow the rafflecopter giveaway (bottom of next page) here to enter.