It is well known that I suck at crafts. I’m not being harsh on myself. In fact, there is a woman who can testify that I gave her strangest baby blanket (that was thankfully saved by my mother).
In September I was terrified of Bridget entering kindergarten and transitioning from the Spinnaker program to a new self-contained special education classroom. Even though I knew the special education teacher for years, leaving the sanctuary of Spinnaker was heart wrenching.
I knew I was over-reacting and worrying for nothing. However loud the brain is shouting, the heart beat of panic is louder. Six months later I am happy to report that not only are we surviving kindergarten, Bridget is thriving. Continue reading
In February 2015 there were 19 confirmed cases of people who have PACS1 Syndrome. As more children have Exome sequencing, we have grown to 32 (known) families. In a year. Thanks to this blog, I am sometimes the first point of contact for the newly diagnosed. It is a role I cherish yet at times feel sad that I cannot provide the answers they may be looking for.
Welcome to the PACS1 family! Now what? Continue reading
I believe in autism. I believe that so many families battle autism like warriors. I believe autism can be masked and I believe that autism can be hidden.
I do not think autism can be cured and question that it should be. Continue reading
Welcome to Throw Back Thursday, blog style.
(Originally posted 18-JUL-2012)
Abby is taking some summer help in math at a local school. This morning when I dropped Abby off she was telling me about the kids in her class. Some were from her current class and others she didn’t know. Abby said that there was only one other girl, a bunch of boys and one weird boy.
What’s that? Abby replied.
I think as children get older they may become more aware (and yes, mean). But at Abby’s age it is just a sense of innocence where they don’t really notice differences in others until the difference is glaringly obvious.
I’m semi-participating in a Summer Blog Hop Challenge meant to show others how the life with a disability, or with a child who has a disability, is a journey. A never ending one, for sure. But a journey filled with triumphs and some tears. Of course per my usual
stick– to-break-the-rules reputation instead of starting in week 1 it is now week 3. So today we are starting the journey half-way through with a letter to myself. Even though that was week 2’s prompt
Dear Younger Me,
I was going to write to the much younger us. The one who is upset because our first love left us. Or the one who just met David and thought um….not my type but sure let’s go to dinner. To the younger us who on the eve of her wedding and asked David to elope instead. Or to the new mom to Abby who was scared out of her mind at this thing that wouldn’t stop crying and tell you eventually she would no longer seem breakable.
Instead I am writing this for you to receive after Boo’s birth. She is now four months old and you are thinking Holy Crap not only did I just get puked on from my neck to my toes I am getting a letter from the future. You are also thinking I’m writing to give you good news except you know us by now and realize maybe not.
First I want to tell you that Boo will survive. You can cry and breathe and rejoice. Now the other shoe dropping on your head is me telling you she will survive but it will not be easy. I am not writing to tell you what will happen. Because no matter what I write it either won’t change things or worse give you the magic answer you are looking form. Rather I write this to the mom of four-month old Boo to give you some advice.
Now you know it is really me, right?
Well here it is:
Never listen to a doctor, a nurse, therapist or school teacher that Boo cannot do something. There will be a doctor or two you will want to punch in the nose, but you will refrain from harming them.
Pay no attention to someone who says that Boo is just like their daughter/son/grandchild and “will grow out of it”.
Never give up hope. In yourself or in Boo.
Do not ever, for one minute, stop searching for an answer. Do not listen to the doctor who says just accept Boo for who she is. It is too important. You and she need the answers and being an unknown neurological syndrome is not an answer.
Keep Early Intervention. As awful as it is you will need them when she is three. But do not listen to them when they say she does not need Spaulding Center for Children. You are right they are wrong and they will deal with being offended.
As much as you have to fight to make Boo all she can be, you will spend more time loving her than fighting for her. She will impact not just your life but those around her. Boo is making a difference in this world one smile at a time. You just have to get through the what seems to be unending puke phase. But I promise it does end.
You know all the friends that say “let me know if I can help”? Here’s the thing they WANT to help. You have to TELL them how. Instead of waiting for them to call you, call them. Say I just need someone to come over and sit with me. Call them and say David’s home do you want to go to the canal with me. Call them and say I’m drowning and just need a friend. Cry and laugh with them. You will be amazed at the support just waiting for you. Your future self knows she waited way too long to reach out. Once you do life will become so much easier and less lonely.
Remember that David is there and he is your partner in this unexpected life. Don’t wait so long to include him in Boo’s therapies (yes, there is more than one). You will be amazed at how well he does.
Lastly, give yourself a break. You are allowed to feel tired and overwhelmed. You are entitled to feel like this just isn’t fair. I promise you that this life becomes easier. You will one day brush your teeth before dinner time. You will one day wear a shirt without Boo’s remains on it. You will be amazed at her journey.
I won’t spoil the good parts for you. Be prepared to be amazed.
Older (but less tired) Me
PS–oh and don’t worry you will not cave and buy Abby a pony.
A few months ago I wrote a post titled Paging Dr. House. One of the most fantastic benefits of blogging is when a reader might not comment but instead send you a lifeline. To protect her privacy, “T” wrote to me shortly after that post and encouraged me not to give up. Not to despair. But more than a pat on the shoulder “T” gave me the name of a doctor who might be willing to review Boo’s history. She may have found our Dr. House.
Thankfully our fears never came true. Instead we were given a new hope: finding an answer. We might not, the doctor was very honest with us. However just looking at Boo she said she was confident that not only did Boo have a syndrome but that the answer was out there. Not five years from now, but as near as six months.
All of us have challenges. Each and every person has to struggle to do something. This Spring at Abby’s school we charged the staff and students to share their Challenges. From the cute (can’t catch butterflies) to the heartbreaking (my mom died) every child and teacher shared. With sharing came hope. Sharing led to compassion. Sharing led to being free to say that while the child might have a challenge, the challenge wouldn’t stop their dreams.
After I posted the program my friend Kristi at Finding Ninee encouraged me to make a Challenge Series. In reaching out to a few friends the response was amazing. May I introduce you to my first guest, Julia.
Julia is a wonderful little girl. We first met her and her family at the Pediatric Therapy. She spends hours each day working in school to learn how make her cerebral palsy work for her. This little girl is a fighter. Defying the odds and expectations of anyone foolish enough to try to put limits on her. Julia loves swimming, horseback riding, picking her sister up at the bus stop and bike riding.
Julia is 5 years old and her challenge is Cerebral Palsy. But don’t feel bad for Julia’s challenge, she just needs some extra time and help. Her smile says it all: Her Challenge makes her stronger.
There are over 800,000 persons in the US with Cerebral Palsy. Cerebral Palsy is a group of disorders that can affect movement, learning, hearing and thinking. Like many other syndromes, children and adult with Cerebral Palsy are as unique as their personalities. To learn more about Cerebral Palsy please visit United Cerebral Palsy
Thank you, Julia for sharing your smile with us today.
This is the inaugural post for the My Challenge Series. To submit your challenge, take a photo holding a sign that says, “MY CHALLENGE IS X” with a short about how you do not let your challenge define you to firebailey@Gmail.com