Category Archives: Special

I hit a turning point in my life when I…

Growing up sometimes sucks. You have to grow up at different points in your life. First you have to learn to tie your shoes and you learn you can no longer depend on your mom doing everything for you. As you get older you learn there are times to lean, times to cry and times to put your big girl panties on.

I hit a turning point in my life when I accepted Boo’s undiagnosis (yes, I just made up my own word). When Boo was first in the NICU we didn’t really think past let our baby live. It was on her second admission at just a month old that I began asking, “what was wrong with my child”.

I wanted to know the why so I could know the outcome. I needed answers so I would know how to “fix” Boo. I wanted a manual on how to make her “better”. I felt it was “unfair” that she had some unknown genetic abnormality. That she didn’t fit the mold of any diagnosis, disease or syndrome.

And four years later, I still feel guilty for my poor choice of words.

From her pediatrician to her neurologist to her genetics physician I would demand answers and be told: you may never have the answers. Just keep doing what you are doing, eventually the science will be there to help Boo. Notice they said help, not fix.

I don’t know when exactly, I put my big girl panties on and stopped focusing on “why” or “fixing”. It took too much time and too many admissions. Boo was put through so much testing. Necessary, but painful testing. Heartbreaking testing that gave us more questions than answers.

At some point I hit a turning point and I just accepted Boo’s undiagnosis. I stopped using Google as a diagnostic tool. I began accepting this life as a mom of a special child. I still carry on with doctors, therapy and special programs. I advocate for awareness. I have Boo “on display” so others will be invested in her life. Because someday the science will be there to tell us why Boo works harder than most children.

Yes, the why is still important but not the most important detail of my day.

And when I hit that turning point? That was the day I began living life to it’s fullest with Boo.

This is how I hit a turning point in my life to Finish that Sentence Friday. What was your turning point?

The day we tortured Boo

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We are surrounded by the ocean/beach. How we had Boo, a child terrified of sand and all that is beach is still a mystery to us. But we are determined to make her a beach bum. Every summer we take her and in the beginning it is horrible. But last year for the first time Boo stood on the sand! It took crocks, socks and a pretzel stick. But she did it!

It took a lot of work for her, but we were all so proud. This year Boo walked on the grass so I (mistakenly) thought she was ready for the beach. Sure she freaked out at home when I took her socks off and made her walk barefoot. But it will be great, right? We put the girls in the jeep and drove onto the beach.

Big mistake. I swear it was the windiest day of the year. Boo did not handle it well. The poor thing whimpered for an hour. We tried everything. Including hiding her under a blanket.

Unfortunately we choose the windiest day of the year for her first attempt. It was so bad a friend left because her husband was being so cranky! At one point we looked down the beach and thought it was fog, but nope it was sand from the dunes.

You can see her trying to be brave. She was watching Allie have fun and but didn’t realize Allie was having fun. She thought the waves were hurting her sister.

But in the end, after about an hour, we finally gave in and packed up to go home. All we heard was “I no like” (hey a sentence). Once in the jeep life was calmer. For the first time she didn’t panic in the jeep at the beach.

So progress was made.

Then today we got the notice that the beach is closed through most of July due to some endangered birds. Apparently birds take precedence over summer fun.

I think if Boo realized the reprieve the birds gave her she would do a happy dance.

Boo and Yoga

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We are incredibly lucky to have found Jessica, Boo’s Yogi. I have written before about Yoga for the Special Child. But for a quick update for those new to this blog, we started Yoga with Jessica about a nine months ago. It was truly an act of Fate that we met, her daughter is a ‘peer’ classmate in Boo’s integrated preschool.

Jessica is an absolute treasure. On top of running a husband and a house with five children, she is also a co-founder of Heartbeats for Down Syndrome. In her “spare” time she teaches yoga for children like Boo. She does both private (for children like Boo who would not be able to concentrate) and small-group glasses for young children.

I have seen Jessica teach a group class with a mix of typical and not-so-typical children. But, biased here, I like the solo lessons. Boo cannot follow directions. Most times Jessica has to move Boo into the position. What we have found is if Jessica’s older daughter does the lesson with Boo the results are beyond terrific.

I started Boo in Yoga for the Special Child to help with Boo’s frustration at being non-verbal. That didn’t happen. What did happen is a significant change in Boo’s bowel issues, a language explosion and a willingness to do the Yoga on her own.

Today in hydrotherapy, her PT was concerned about the toe-walking and a tendency for her right leg to turn inward. To demonstrate she asked Boo to stand on one leg. Boo didn’t understand. But when we said, Boo tree pose…viola! Boo stood on one leg in ~~an almost~~ perfect tree pose.

Hey huge milestone there!

It is difficult, between Jessica’s commitments and my own life we tend to interfere with Boo’s Yoga schedule. One of my goals (and Jessica’s) is to make her lessons more routine. I have noticed, when I put the extra time in (between homework, life and everything else) Yoga for the Special Child works.

Honestly, we should probably go 3-4 times a week. But between work, school, therapies and life it just isn’t possible.

But Yoga isn’t for just the “Special Child”. Allie loves Yoga. Because I am not a Yogi nor one who can mediate I am not the best mentor for the girls. But before bedtime when we put Boo through her poses, Allie joins in.

And we all relax, if just for a moment.

To learn more about Jessica’s story please visit Heartbeats For Down Syndrome or the National Down Syndrome Society.

This post was inspired by Rachel Tao of Poop who shared a story of childhood yoga and then recommended I post Boo’s experience. Rachel is one of the calmest bloggers I have “met”. She always sees the message in the little things. Something I need to learn how to do. Thanks, Rachel!

To find a Yoga program for the Special Child look here (I really recommend finding someone on this site and not just anyone.) for Yoga just for the child I found this site but cannot totally endorse it since I found Jessica simply by putting out a cry on Facebook.