Words I never thought I would utter. But truly, I am thankful for the GAP. Ellen at Love that Max posted a picture on Facebook of the latest GAP add. Giving them a shout out for including a girl with cerebral palsy.
I had to blow up the add to the full-view to find her.
It’s Throw-back Thursday. This post was originally published on 06-SEP-2012 after a wonderful week of company. But then I became an idiot. Instead of being warrior mom I was one who judged. A person I wasn’t too proud to be.
I have been blogging for about four years now. In my first year my friend Michelle at Big Blueberry Eyes began hosting the 31 for 21 challenge. Although Boo doesn’t have Down Syndrome she has a lot of friends that do. I have participated for the past three years and will do so again this year.
And this year I am starting on time, so bonus points!
October is Down Syndrome Awareness Month. Boo’s favorite friend at school, Jillian, has Down Syndrome. Just like Boo, Jillian learned sign-language first. Did you know that most therapies used in treatment for a person with autism or developmental delay were first created to be used for children with Down Syndrome?
Sadly more fiction is out there about Down Syndrome than facts. Last summer a man (for lack of a better word) told a woman that it is immoral to have a child with Down Syndrome. He is wrong, so wrong. I am not promoting pro-life or pro-choice, it is your decision. However I urge, no beg you that if you are pregnant and told your baby might have Down Syndrome to find out the facts, find the support and find information before making a choice you cannot take back.
Here is what Down Syndrome is not:
The purpose of the 31 for 21 challenge is to post every day in October. Each post does not have to be Down Syndrome related. I did focus on that today to kick off the month. Please visit Michelle’s post to learn more about participating.
I hope my fellow bloggers join Michelle’s Challenge. Because awareness promotes acceptance.
Just what we all want for our children. To be seen just like everyone else.
Boo is in an integrated preschool. A school where for every child that has a disability there is one typical child. The disabilities range from autism to ADHD to Down Syndrome to Cerebral Palsy to Boo. At a quick glance at the class you might not be able to tell which child is typical and which child is brilliant.
Which is the whole point of the program.
Okay maybe it isn’t the whole point. However the point could be made that by exposing our children to typical will allow them to grow social skills that come naturally to their peers. The peers learn empathy, patience and that not everyone is the same.
All good, right?
Except the other day when it wasn’t.
My friend was walking into school with her child. Behind her another mother was walking in with their own. She heard from behind her, “who’s that”?
The child replied, That is X. He doesn’t talk.
Instead of letting it go or saying something….ANYTHING positive the mother was heard shushing her and saying “that’s not nice”.
Here is the thing. What the girl said wasn’t wrong. It wasn’t mean. It wasn’t “not nice”. It was true. Kind of. X can talk. But he has autism so you have to be looking at him and engage him for him to talk back to you.
X’s mom left feeling like her son was weird. Like he is misunderstood. This one place in the universe (outside his home) was supposed to be the safe place for us. A place where our child is accepted for who they are.
I adore Boo’s program. I love each and every one of her teachers and therapists. But I worry they might be missing an important component. I understand privacy laws and all that crap. However the typical children should be made aware (in words they understand) why X doesn’t talk to them. Why Boo doesn’t play appropriately with them. Why oh why in words a young child understand all children are not the same.
That all children, typical and brilliant are all special in their own way.
I am sure they do teach it. But the other day the lesson was lost and a mom went home feeling her son was weird. I think there needs to be more done. More parent teaching. Yes, I know we cannot get parents to come to a PTA meeting who can we get them to an inclusion training?
There is an answer somewhere. It starts with the letting the children teach the parents. It doesn’t stop at an integrated preschool but an integrated school environment. One where every day there is a brief moment of education of those with challenges. Awareness helps but until you ask you do not know, so you guess. It’s perfectly normal. Being aware is knowing autism exists. Being knowledgeable is knowing what autism is. We need to let inclusion bring more than awareness but knowledge.
If we can not let a 5 year-old ask the question, how can the 18 year-old know?
A few months ago Boo began serious toe-walking. She could be a contender for the Boston Ballet. It was concerning because this is also a serious sign that her spinal cord had retethered. The neurourologist (yes there is such a thing) and the neurologist told me to call the neurosurgeon ASAP.
Like today.
I was floored. I was told that there was a slim chance Boo would need further surgery. I admit it, I broke. A little. Okay, a lot. Then I called the neurosurgeon and asked for an MRI. I was told that she had to be seen by him first.
And this ladies and gentleman is why healthcare is so expensive. But that is a rant for a different day. We finally got an appointment with the neurosurgeon who told me that there was a ZERO percent chance his surgery resulted in a retether. Since I really do not care for the man I doubted him (gasp!) and explained the MRI was a non-invasive procedure. That although she would need to be sedated and there were risks associated with that sedation there was more of a risk that if her cord remained tethered we would be facing nerve-loss, muscle loss and a host of other scary things. So order the test.
I won or he conceded just to get me out of his office. Either way Boo got her MRI. Unfortunately for her it was scheduled for 2 pm and she could not eat after midnight. Then her test was postponed until 4:30 pm. Most adults I know would not be able to go 20+ hours without eating. In solidarity I did not eat either. I was crankier.
Boo was a trooper. She didn’t cry at all. That is until the first IV attempt failed. And the second IV attempt while successful was a tad traumatic. Once medicated she fell asleep mid-scream.
She woke up in mid-scream. It was the first time she was terrified of a nurse. I don’t know who was more heartbroken, her nurse or her. The nurses at Children’s are simply the best. They gave her what comfort they could (me) and kept her safe. Boo calmed down, we went home and waited to hear from neurosurgery.
And waited.
Tired of waiting I called and found out that I was wrong. The neurosurgeon was right. HIS surgery didn’t result in a retether. She will need to see orthopedics and do more stretching.
But Boo doesn’t need more surgery. So he can be right and I will take the hit.
Because she doesn’t need more surgery. Best end of summer news ever.
It’s Thursday so it’s a throw-back day. This post was originally published on 19-APR-2013 as part of the 5-minute series. Where you are given a word and just write, unedited, for five minutes straight.
The prompt: JUMP
Dear the Fellow that I fired, remember when you told me that Boo would never walk, talk, know us. She was six-months old. You told her father and I that she had a brain disorder which meant her brain pattern was ‘too slow’.
I went home and cried. Then I call your boss. You know the head of Neurology. Who told me you had no right, no freaking right to tell me that my daughter might do or not do anything. She has an unknown genetic disorder NEVER SEEN before. That very rarely do you take MRI’s of 6-month old brains. Exactly what would he have compared to Boo too?
So he told me you were off our case. We got transferred to another Fellow. An awesome doctor who believes in our daughter.
Four years later, after 9 months of therapy Boo jumped. Yes, you freaking jerk, my daughter not only laughs, signs and talks, knows her sister, her father, myself and HER FRIENDS. My daughter also walks and loves her puppy!
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| Boo not only loving but kissing her puppy! |
And this week not only did she jump, she jumped over a line.
What you took for granted in your knowledge of all things is that you knew nothing of my daughter’s strength, joy, heart and determination. You did not know that she has a circle of people who make her more than you ever gave her credit for.
Boo jumped. And I hate that for a minute you made me think she wouldn’t.
Damn you, you made me doubt my daughter. Just once, at 6m of age. After I talked to your boss, I never did again.
Boo jumped.
END
Darn it I am out of time! I had so much more to say on this subject. Obviously I have some unresolved anger at that Fellow. But I am also thankful for the Fellow his boss assigned Boo’s care, who is now an MD. This wonderful doctor who saw the potential in Boo and never told me to give up!
Today I would like to introduce Lizzi the author of Considerings where she actively tries to find the good in life. A blog that is sometimes fiction so good you think it is true, some days full of humor and some days despair. It’s a wonderful mix of writing and feelings. No matter what Lizzi faces each week she is determined to end on a high note with her Ten Things of Thankful post. A wrap up each Saturday where she sees the light in all of her clouds.
Thank you, Lizzi for your honesty with your challenge. All of us find moments of despair. When it gets too much. When you wonder if that shiny bottle will dull the pain. Trust me, it just makes you puke if used for that purpose. There are so many challenges interlinked, as Lizzi has shown. But there is support out there for just about anything you are facing. This virtual world is sometimes all you need to realize you are not alone. I’m glad she still sees the hope in all the clouds.
What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com
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.
Love,
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.
Today’s challenge comes from a fellow warrior mom: Laura. Her son is gorgeous. Like a mini-Elvis gorgeous. You know before he got old. Laura is an incredible photographer, gorgeous inside and out. Her smile lights up a room. Like many of us, she has a challenge that I am so thankful she is willing to share.
My Challenge : Undiagnosed Postpartum depression.
My challenge is a common one. One that crops up among new moms
everywhere. But many of us who experience it are completely unprepared. Sure,
we all read the books. We spend months agonizing over what colors we should
paint our nurseries. Should we nurse or bottle-feed? What kind of diapers
should be buy? Moby wrap or Ergo Carrier? There’s a thousand decisions to make
concerning BABY when getting ready to have a child. But a little known thing
happens to us once that baby comes out.. Our hormones go haywire. And
sometimes, they stay that way. It’s shocking and unexpected. I say it’s
unexpected because “THEY” don’t warn us. “THEY” meaning the baby experts. There
is a 500+ page book on all of our bookshelves talking about every detail to
expect when you’re expecting - but the chapter on the postpartum baby blues
isn’t given any real fanfare. And, well, maybe it should.
Like most moms in their last trimester, I was anxious for my baby
to come early. I really wanted to deliver somewhere around the 38 week mark.
That didn’t happen. 41 weeks and then some, I was induced. 24 hours later, we
were talking c-section. So, right from the start nothing was going as planned.
I was fine with that knowing soon I’d have my little boy in my arms. I cried
the next 4 days in the hospital. The nurses assured me it was normal to be a
little ‘weepy’. But I was totally confused.. This was such a joyous event and I
was full of anxiety and was on the verge of a meltdown anytime someone new
walked into my room.. I stuffed it down - not wanting to appear weak. I got
this. I can handle motherhood. Whatever this emotional shit is, it’s gonna have
to take a hike.
We went home.. The crying continued. I looked at my husband
sleeping soundly next to me as I had a 6 day old infant attached to me. I
quietly thought to myself, “What if I just returned him to those nurses... They
know so much more about how to handle this.. We are completely unprepared” and
I cried some more.
I went to my follow up OB appointment. She asked me how I was
feeling. It was the first time anyone asked me that.. I choked back the hard
lump of tears that was still so readily available and said, “I’m ok. I cry a
little. But I’m ok”.. It was a lie. I was a mess. But I was terrified. The
crazy hormones in me made me believe if I showed her I was weak, she would take
this baby away from me. And I wasn’t very much in love with motherhood yet, but
I didn’t want to be fired from it just yet.
The days turned into a blur. I started to walk outside. I found my
way to a nursing support group and that helped a ton. But every night the
anxiety would return. Was this really for us? Did we make the right decision?
Yes, of course we did. But I would obsess over whether I could do a good-enough
job. All these other mothers around me all seemed to have it soo together. It
just seemed an insurmountable task to be a good mother..
Somehow - we made it through the first year. And then another. I
casually accepted my emotional status as just ‘a mom in love with her kid’. It
wasn’t that. I had postpartum depression. Big time. I never was formally
diagnosed because I never admitted it to anyone but myself.
Being in a baby group has it’s advantages in that you can watch
your child’s development alongside other children their age. For us, this was
another trigger for my depression.. My son was no where near where these other
children were in every area of development. It was no surprise when he was
diagnosed with autism at age 2.5 . But those waves of anxiety were flooding
back. Except this time, my son was really relying on me to keep it together so
we both could get the help we needed.
In my frenzy of setting up a list of therapy appointments for him,
I found myself a therapist whom I still see today. And a girlfriend introduced
me to the world of essential oils (which I originally passed off as hippie
juice for a while - but I’ve since turned the corner and am now addicted). I
can self-manage the anxiety when it hits hard. My down-swing periods are not
nearly as frequent and I recognize them when they’re coming.
Postpartum
depression is a very real thing. It’s not a fun part of preparing for a baby,
so, nobody really gives it a good discussion. But it’s worth reading that
chapter in the book. And to be honest with your doctors about how you feel
afterward. I may not have been prepared for what came following my son’s birth,
but I know now that I can overcome some serious stuff.
And that’s a beautiful realization.
******************************
Isn't she wicked awesome? For those not from New England there is no higher compliment. I am so happy to know Laura and to have her be open and honest about her challenge. Approximately 15% of women suffer from postpartum depression. That is ONE in every SEVEN women. With that statistic you probably know at least one fellow mom who need your help. I am very grateful Laura found her village.
I am proud to call her friend, thank you Laura.
For more information about postpartum depression see your doctor as soon as possible. Help is available, even answers if you feel concerned about yourself or your child. There is also an enormous amount of information available online. It is most important to remember: you are not alone, you have done nothing wrong and you should never feel ashamed. Please visit Postpartum Progress for more resources.
What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com
(Un)Diagnosed and still okay 