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
Throw-back Thursday, today to not quite end Down Syndrome Awareness Month I am reposting a blog from October 31, 2013. It is beyond important to raise awareness for what Down Syndrome is and what it is not. This post explains why it is so important to any parent whose child has a special need.
I would like to introduce you to Madrathe mother of a wonderful man who has Down Syndrome. I believe every parent of a child with special needs has the same challenge.
 |
| Marcus and his mom Mardra |
When Mardra sent me her Challenge I immediately thought of Robert Sayler. Then the horrific parody of the ALS Challenge was done to a young autistic man. Yes, cruelty happens, but when your child is unable to communicate, when their very being is something that can be preyed upon you live with another fear. I send Abby to school every day knowing she could be bullied, targeted and hurt. Yet I know I have provided the tools she needs to alert myself, her father or a trusted adult to keep her as safe as possible. David teachers her self-defense and drills into her the need to be aware of her surroundings. Yet, I know with all the tools we give her a Sandy Hook, a 9/11 or a Boston Marathon could happen. Or worse.
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
Some times….I hate this life. I hate that as much as I love Abby I fear those teenage years. I hate that one day she will go through a period of her life where we will not understand one another.
But I accept that.
I will not effing accept is that I HATE in capital and bold letters that doctors will never show concern for Bridget. That she has to have some mysterious swelling that one doctor tells me to call another doctor about who tells me to call yet another specialist about. That when I finally get her into the vascular clinic she is seen by one doctor and fourteen medical students/fellows and I am told that her vasomotor instability is not that big of a deal. “A LOT” of kids have something “like” this phenomenon and not to worry. When asked if I should be worried that it could be happening while she sleeps and is it fatal, I was told no. I told them they would be the first person I called should they be wrong.
No parent (and I am not looking for a poor Kerri thing here) should be told that. That without any testing, with a brief exam that their child is fine. Parents should not be made to feel like we are bothering doctors.
We are the reason they can afford their student loans, vacation homes and alimony bills.
Bridget has SIXTEEN different specialists. Why the freaking hell do I have to call them? They are all at the same flipping hospital. Can they not call one another and chat, is that too much to ask?
And why, dear God why, do they refer to one another and then disagree? Why must I always be the advocate, the voice of reason and the fingers of Google. Why do I have to always be vigilant? The one who e-mails and calls cardiology, genetics, rhuematology, neurology, GI, neuro-urology (yes, there is such a thing), pulmonology? Why do they think that because it is NOT life threatening it doesn’t impact her life?
Not that she “suffers”. There are children with disease, cancer and deformities that have a life so much more difficult. I completely get how lucky we are and how selfish I am for getting pissy that she has to endure things that really are not that bad in the scheme of things. Recently she got another quirk, not an ailment or symptom really. But just one more thing to add to her Booness. I said she already had 15 why add one more.
This was not the life I expected.
To constantly be second-guessing myself. And the Harvard Graduates.
To wonder if I push too hard or not enough.
To cry because children are supposed to be beings of joy before they are teenagers.
To be at my wits end because although I love Bridget for who she is I hate the fact that I don’t know why she is the way she is. That we need to know the why so we can give her the best life she deserves to live. Just like her sister.
To have to physically hold my child down for two hours while she screams during a test of her bladder function.
Because as much as I love my child sometimes I resent that she isn’t perfect. That she isn’t easy. That she, with all her advances, cannot keep up with where life has placed us.
Because I am not capable of being the perfect mom that can handle everything.
Because sometimes I cannot even handle my beautiful, awesome, perfect daughter.
And I am sorry. Because sometimes I effing resent it. I fucking hate that this is our life. A life where we know our beautiful daughter will always struggle. That our lives are scheduled around school, therapies, doctors appointments and not play dates, gymnastics and ballet.
We will struggle with Boo. For freaking ever. This will not end. That although our children are always our children Bridget will forever be our child and not the mother of our grandchildren.
That I look into Boo’s eyes and see how beautiful she is yet think if only….
It’s Throw-back Thursday. A day to revisit an older blog post. This one is from when I a was a tad, um, infuriated with a celebrity.
Originally posted 23-OCT-2012
Dear Ann,
May I call you Ann? I feel we can be informal since you feel so comfortable insulting my child. I mean, really, only family should be able to make us think that we are not good enough. On the other hand….
You, MS. COULTER, are not my family. You are not of my world, my life, my heart.
Because you, Ms. Coulter, from your bully pulpit are comfortable enough behind the camera. But have you ever had to face the affect of your insults and disparaging remarks? When you attack public figures, I usually give you some leeway. After all, they are grown-ups who have had to develop a thick skin in order to navigate life in the public eye.
But my child? My child, Ms. Coulter, does not and should not ever be the brunt of your pitiful attacks. Neither has her sister. A sister who knows that calling some one a retard is wrong but not why. You, Ms. Coulter, do not have to explain to your 9-year old that her sister is not retarded but intellectually disabled.
You see, Ms. Coulter, in your complete and utter ignorance, do not realize that when you call our President a retard (which by the way, should be treasonous no matter what your political leanings) you are not insulting him. You are, in fact, insulting the estimated 2.5 million US citizens you do not even acknowledge.
That is the sad truth, isn’t it Ms. Coulter? You do not SEE those who are intellectually disabled. You only see your own agenda and how to get your name in the headlines. Doing it by insulting my daughter and others like her, that is heinous.
I know the arguments for using the word retard. I have this discussion with friends and family members. I am from the generation where you could call some one “gay” but not mean homosexual. I am from the generation where retard was an insult you called your friends in a lighthearted manner.
But, unlike you, Ms. Coulter, I grew up. And unlike you, I am lucky to have an intellectually disabled child who only knows love. But some day, unfortunately she and her sister will come into contact with some one like you. I fear that day. I fear the day when some one looks at my daughter and sees a RETARD and not a beautiful girl.
I ask you, Ms. Coulter to look at this face:
and tell her sister that her beloved sister is retard. Because that is what you did when you thought you were insulting the President of the United States of America.
From a mom who knows better,
Kerri
When you think about your body, I bet you see the flaws. Okay I see the flaws (of my body, not yours). I avoid the mirror after a shower better than a deer avoids hunting season. I would rather talk or write about anything other than my body.
So with the first Finish that Sentence in over a month I almost skipped. I truly could not think of one amazing thing my body has done. Let alone the most amazing thing my body has done.
I know, you are thinking: CHILD BIRTH. But well, I didn’t do that too well. Pregnancy, sure. That was easy. Heck it wasn’t until month 7 with Abby that I even thought of maternity clothes (don’t hate me). Yet, I don’t really think that is the most amazing thing my body has done. Every mother, after all, has done it.
So to be amazing, it has to be unique. Right?
I was stumped. Truly stumped by this week’s prompt. What is the most amazing thing my body has done?
Crickets.
How’s that for self-confidence?
Then I realized it was simple, really. The most amazing thing my body has done is provide whatever Boo needs. I have held Boo down (physically) during a truly invasive, painful procedure yet she willingly runs into my arms. I have comforted Boo during moments of epic meltdowns and moments of a Hallmark-commercial sweetness.
This body is the one Boo clings to more than any other. This body, my body, is the one most likely to soothe, to make secure, to always be there when needed. At 3 in the morning or at 3 in the afternoon.
It amazes me, with every test I have held her down through, she prefers my body over all others.
My cheek is the one that rests against hers for a kiss.
My ear lobe is the one she rubs for sensory comfort.
My mouth the one that advocates for her.
My shoulder is where she rests her head when tired, when sad, when happy and when content.
My lap is the most comfortable seat in any restaurant.
My hips are the one she rests her head against as I do dishes, just wanting to be close to my side.
My legs are the ones carry her when she wants to walk but is too tired.
My hand is the one that held as she slides down the ‘big’ slide.
My arms are the ones that picks her up when she falls and lets her go when she flies.
The most amazing thing my body has done is something not for me, but for my beautiful Boo.
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.
Last week I was late and well, I’m still technically a week behind the postings. This week’s prompt in the Summer Blog Hop Challenge: Talking Raw, Talking Real: Challenges Related to a Disability.
I kind of wish Boo could write this post. Or Abby. I bet they would say, Challenge? What Challenge?
The truth is, though, loving a child with a disability doesn’t mean you do not see their challenges. They are pretty out there. If you see Boo you might say her challenge is communication. Or motor planning (then you didn’t see her climb on the counter and remove all knives from the strainer to get her Sophia cup).
As I am unsure how Boo would perceive her challenge, I will explain how being a parent of a child with a disability presents a unique situation.
The true challenge related to Boo’s disability is that sometimes I am not sure if I am dealing with her disability or if I am dealing with toddler-like behavior. I waffle with pushing too hard to not pushing enough. I make allowances where maybe I shouldn’t.
I wonder when I pick Boo up and carry her am I doing it for her safety, because she cannot walk that far or am I doing it because it is just easier?
Searching for schools, daycare centers, camps…a whole other challenge. Recently I was talking with a friend whose son has a cardiac condition. She was sending him to “real” camp for the first time. Not a special needs camp. Not a camp that was prepared to deal with health concerns. When you have a child with a disability every decision you make is important. In P’s case if her son has a cardiac event will the camp be prepared with how to help him? In Boo’s case if we decide to send her to camp will they understand she wanders? That she has a sensory processing disorder which may make activities difficult for her. That she turns blue if chilled and red/clammy when overheated. Each decision we make has direct impact on our child, the other children in the school/daycare/camp and their caretakers. Unlike Abby where I basically drop her off in the morning, P will have to make sure that she reiterates every day what to do in the event of an emergency.
That is something a parent of a “typical” child never ponders.
We worry more. Sorry, but we do. I worry more with Boo than I ever do with Abby. Every decision we make we have to balance on: is she safe, is this challenging enough, does she have enough support? I research every activity she does before it happens.
Abby? Not so much. She wants to start riding, okay let’s go to XYZ barn. I knew nothing (and still do not) about horseback riding. I didn’t even know we should choose a style. Boo on the other hand? I never would have allowed her to begin riding without doing a few hours of research on the best type for her skill level.
It is hard to define the true challenge as it relates to Boo’s disability because she doesn’t have just one disability. Our challenge becomes balancing working with her disabilities while determining what is typical behavior.
Even if it means we worry more.
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.
Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. I hope you enjoy the trip back in time.
(Originally posted on 30-JUL-2012)
Right now I am reading a great book with an odd title. It is called, My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kidswith Disabilities by Yantra Bertelli, Jennifer Silverman and Sarah Talbot . It is a collection of memories by moms and dads who have done it. Lived the life as a parent of a special needs child.
In the book there is an offering called Glass Houses by Sarah Talbot. She tells of how instead of institutionalizing her son, they basically turned their home into an institution. The State they live in actually agreed that it was less expensive AND more healthy to raise their son at home and bring the services (including aides) to him. However Caleb is not their only child. So by turning their home into the institution they also (for lack of a better word) institutionalized the entire family.
Not only did the parents lose any hope of privacy, so did the other children.
It made me think back to when Boo had Early Intervention coming to the home 3-4 times a week. And how (especially in the beginning) I would “company clean” the house the hour before they arrived. You know what I mean, when you know your MIL is coming to visit so you make sure if she “unexpectedly” opens a closet nothing will fall on her head. You know the stuff that is generally on the floor/counter space? I can even recall telling my husband once not to use the bathroom! And forget the semi-annual evaluations when we not only had our regular EI Specialist but 3-4 more people coming to (in my mind) inspect us while they evaluated Boo.
The day after Boo’s last EI appointment was the last time my kitchen counter was spotless.
But reading Glass Houses brought the memories back and made me think of how under the spotlight we are. Even though EI is over (thank goodness!), we are still under the “view” of the various therapists, teachers and aides. I am sure parents of ‘normal’ children probably have moments of second-guessing themselves. However I bet it doesn’t happen everyday at therapy or when you talk to your child’s aide and realize that you forgot to give the child a bath that morning because you had both been up all night. Let’s face it, sometimes Boo is lucky to have on matching socks!
When we got drafted (since I know I signed up for the child who slept at night, not the one who wouldn’t for going on 4 years) into this life we never expected that on top of everything else we would be opening our lives to constant surveillance.
We have to worry that Boo will bite someone other than herself. We have to worry that when she goes to school, the doctor or a million therapy appointments they will not believe the bump on her head came from herself and not us. We worry about going to the ER that they will think we are a hypochondriac or worse. We worry about that woman in the parking lot who doesn’t understand that we are not hurting our child as we force them into the car seat.
When Boo was in the NICU I worried A LOT. Over the years I have worried more. But back in the NICU I never imagined that when Boo entered our life we would be opening our lives (and Allies) to life on display.
I better make sure Boo’s socks match.
(Un)Diagnosed and still okay 