Category Archives: Special education

It hasn’t happened yet

Yesterday was preschool graduation. For the third year in a row I did not attend. As I was leaving another mom said, oh are you too upset to stay?

Truthfully, no. Cause it’s year three and she will be going back today. She will take a one week break and be back the first of July. Boo does not get summer vacation (thank goodness) and she will not be moving on to Kindergarten in the fall. It is not meant to sound harsh or like I am upset. I am not sad at all that she is not graduating with her peers. I am overjoyed. Heck I am thankful that we are not facing Kindergarten next year.

I’m doing the happy dance.

You see, Boo has the best and I mean best ever pre-K teacher. One that loves and cares for Boo in a way that makes my heart ten sizes to large. Miss Trisha is the reason Boo was enrolled into the special education program. She is the reason Boo has made such significant gains. Miss Trisha is the reason Boo was included in the best ever ABA program headed by a team of professionals that but the child before anything else.

I am consistently amazed at Boo’s willpower and progress. Three years ago when she entered the pre-K classroom she had (maybe) 10 words and 20 signs. Now she shouts MISS TISHA OME ERE. When Boo was screened for the pre-K program she was using a pediatric walker.

Today she jumped around in a circle with her friends. Yes, she danced while they walked around in formation. But she was present. She was in the moment. She was having fun. This is the year Boo made friends. For real. Friends that invite her to birthday parties. Friends that do not let her sit on the sidelines and just observe. Friends that taught her how to play tag. Friends that on a field trip at the Zoo make sure she keeps up.

Not only did she help Boo up she celebrated afterwards

This marks the first field trip I attended with Boo that I did not cry afterwards. Afterwards her teacher asked if I was okay. Because to Miss Trisha all of us are her responsibility.

This year Boo made friends. As in more than one. Ones that will keep in touch and be a part of her life for a long time to come. Girls and boys who play with her not along side of her. Children who run to hug her in the morning and interpret her language when there is a new child or substitute therapist.

But for the first time the pre-K non-graduation makes me wonder not worry about what September will bring. How many more milestones and leaps she will make developmentally under the love of Miss Trisha? It is breathtaking to imagine.

No I did not attend Boo’s pre-K graduation. Because it hasn’t happened yet. I will be there in the front row when it does. But I plan on that not happening until Miss Trisha retires.

Somewhere around Boo’s 18th birthday.

My Challenge: Missy

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It is my pleasure to introduce my friend Missy. Missy is a true warrior mom. She coaches, brings her daughter to cheer leading, gymnastics and any event featuring Sofia the First. In addition to keeping her princess happy, Missy has two sons that keep her on her toes with (pick any sport) practice.

Missy’s challenge? Anxiety

Truthfully her challenge should be that she is a Peyton Manning fan, but we are friends anyway. Missy doesn’t let anxiety stop her from being awesome at her job, working with children like Boo every day. She channels her anxiety into showing her charges that just because they have more challenges than most, with hard work and dedication they can defy expectations.

Anxiety is tough. It is a silent challenge. One that many are afraid to share for fear of misjudgment. Yet an estimated 40 MILLION Americans are challenged with a form of anxiety. Sadly, only one-third is estimated to seek assistance. Thank you, Missy for sharing your Challenge. I am especially thankful for the care you show Boo every day. For more information and resources on anxiety please visit the Anxiety and Depression Association of America.

What’s your challenge is a series that was inspired by a program I created at Abby’s school. To submit your challenge, please e-mail me at firebailey@gmail.com

Throw back Thursday–Inclusion

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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.

TBT Blog Style

(Originally posted 18-JUL-2012)

Allie is taking some summer help in math at a local school. This morning when I dropped Allie off she was telling me about the kids in her class. Some were from her current class and others she didn’t know. Allie said that there was only one other girl, a bunch of boys and one weird boy.

Weird boy, I asked, do you mean the boy with Down syndrome?

What’s that? Allie replied.

Well he is special needs, like Boo, I explained

Oh, is that why he has a teacher just for him in the class? (Yup) That makes sense now. I thought there was something different but couldn’t figure it out. Why didn’t they tell me so I could help him?

This conversation floored me on many levels. First, Allie has intuitively known that there is something special about Boo and has accepted her without conditions. I automatically assumed that she would recognize and accept it in another child. Second, Allie attends enough of Boo’s therapy appointments to see other children like this boy. I was completely astounded that she even had to ask, or worse in her mind label this boy as “weird”.

Allie has been a staunch defender of Boo. She would never let one of her friends use that term with her sister, so why did she do it with a boy she just met? Have I failed in some way in to prepare and nurture her to accept all others like she does Boo?

Of course, I asked Allie! Not that specifically, but why she did she not understand that this boy was special. She thought because he was so big and not little like Boo he was just a boy. I asked (just to make sure) that she hadn’t made fun of this boy. She was quick to say no, but that she wished that the teacher had told her because the other boys in the class did. Allie was so cute, telling me that she would make sure it didn’t happen again! We had a long talk about Boo and how would Allie feel if one of her classmates called Boo “weird”.

But it made me think, is inclusion working? Are the teachers and other parents explaining to their children that not all children can run, read, speak like others. Whose responsibility is it really? Mine, in some way because while I can educate/prepare Allie and she can then teach her peers. But neither Allie, her dad or I can go into Boo’s class and wake up the other children/parents. I can only be responsible for the children who interact with Boo in my presence.

Is it the teacher’s responsibility? Certainty, but how can they do this without embarrassing (not the right word, but hopefully you get my point!) the child in question. Allie thought the teacher should have let the kids know.

I think the biggest obstacle is that the other parents are not on the playground or in the classroom with their children. So they might not even be aware, like me, that their child may be prejudging some one. Think about it, if you do not have a special child would you think to educate your ‘typical’ child about a child with Downs, CP, and autism or like Boo one who is undiagnosed? I will admit that before Boo I cannot honestly say I would have said something to Allie until she asked/made a comment in my presence.

I think as children get older they may become more aware (and yes, mean). But at Allie’s age it is just a sense of innocence where they don’t really notice differences in others until the difference is glaringly obvious.

Boo is in an integrated preschool with a not so equal ratio of special/typical kiddos. Even there I notice that some parents look at us askew when Boo is not participating like their ‘typical’ kid in the class. Once a child asked their mom what was wrong with Boo and the mother, instead of educating, told the child to ‘hush’.

So I don’t know what the answer is, if integration is worth it or how to educate the world at large that Boo just has a different sense of typical.

Why I’m not mad at Toni Braxton

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Toni Braxton is facing a lot of criticism over her memoir, Unbreak My Heart. According to E-online, Ms. Braxton writes that she believed her son’s autism was “God’s payback” for having an abortion. While many are understandably upset about Ms. Braxton’s provoking statement, I think what is being missed in the outcry is she states in her book she BELIEVED. With a “D“.

What parent of a child with special needs has not had that thought? That our child’s disability was because something we did? That you might be being punished for something? That you did something wrong? Did you have a cocktail before you knew you were pregnant? Did you scuba dive? Were you a bad person? You and your spouse fought. You cried when you found out you were pregnant.

When Boo was first in the NICU I wracked my brain trying to come up with some reason why. Every time some new worry arises with her I wonder why she suffers. I still am searching to the ends of Google to find an answer. I have blamed myself for not wanting a second child. I blamed myself for knowing that I probably had a glass (or two) of wine before I knew I pregnant. I blamed David, thinking surely something he must have come into contact with at work did this. This thing that no one could explain to us.

If not one parent has ever had that thought, I call bullshit. Yup, I just swore at you. Because it is impossible for me to believe that when told your child had XQZ you handed out cigars and said how proud you were that your child may have to struggle more than others. That not once did you second guess yourself, your doctor, your medical history or your God. It is easy to blame God for a lot of things. He very rarely comes to the witness stand. He is kind of busy.

Photo Credit: Finding Ninee

He is blamed for war, for famine, why not question him for your child’s disability or illness? Or your own. I imagine there are many cancer warriors who wonder why they got sick. What did they do or not do?

In Ms. Braxton’s memoir she is recounting her feelings. What she went through as a parent of a newly diagnosed child. I do not agree with everything she states in her book. But am I outraged that she once thought God was punishing her for a decision she made? That she went there and bared her feelings? We might write in our diary, our blog, our book about our feelings and fears. We cry to our friends, our partners and our moms. We go through a period of grief of the child that might have been. That is natural. Am I sometimes fearful that one day Abby or Bridget might read a post I have written and be hurt by it? Of course! But I am also aware that my love for them will overshadow any fears or thoughts I have had, they will read the whole post/entry and not take a line or two out of context.

Did Toni Braxton set autism awareness back a decade with her memoir? Nope. Not buying it. Only if the crazies out there start using it as an anti-abortion statement. I can see it now, don’t have an abortion your next child will be punished. Let’s face it, there are idiots out there who use whatever sound bite possible to defend their position. Even if there is a thousand reams of information to back up the opposite position. Of course I wish she spent more time talking about how wonderful her son is, how proud she is, how she realizes that autism (or any disability) isn’t a punishment. That life with a child with special needs is a life-altering journey.

But it’s not my memoir.

Most parents would never, ever, tell her child that she wondered why her child was born with a disability. We tell them that they were born perfect. There is nothing “wrong” with them. We lobby for inclusion. We shout from the rooftops our advocacy.

We believe deep in our hearts that our child is perfect, beautiful, amazing and we are astounded by their will.

But at one moment in time, each and every one of us wondered why “it” happened. Then our hearts grew ten times too large and we stopped wondering and began living.

At least I’m honest enough to admit it.

Special thanks and a shout out to my friend Kristi at Finding Ninee who drew God on the Witness Stand with three hours notice, never asking why I needed it! And to Tia who pre-read this post and encouraged me to post it knowing others may disagree.

My Challenge: Julia

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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

The joy of language

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Boo gives me a lot of atypical milestones, moments, frustrations and joys. Every once in a while, though Boo gives me that typical parent moment when I realize even special children are typical in ways never imagined.

Boo has worked so very hard to obtain language. She has been in speech therapy since she was in two years old. Her therapists have never given up on her. They have persevered, coming up with new techniques, scaling things back or pushing her forward as warranted.

Like most parents the first time you hear your child babble on the baby monitor you lay there and smile, rejoice and wonder what the heck they are saying.

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When you go to their room in the morning and they greet you like you just missed the best dream ever your heart warms.

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And if you are a normal parent by 7 pm you just wish they would stop talking. When you tire of trying to decipher what they are trying to tell you. Even as they crack you up.

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I live for these typical moments. The moments that most parents, to some extent, gets to witness. The babble, the random words and the expressions. Things five years ago I never imagined.

Even as my ears ring.

A special thank you to Boo’s numerous therapists for giving me these moments.

And yes, Boo is still wearing her Halloween pajamas. And yes, I know it is May. Don’t judge.

I Run 4

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I have written before (insert too much!) about the importance of creating a village of support when you have a child with special needs. Heck, even with a typical child a support system should be included with every birth certificate.

I began running in earnest about a year ago. I ran to get away from the stress of just, well, everything. Taking 20-odd minutes to focus on nothing but breathing and trying not to trip in public. It wasn’t always pretty, but I finally found my rhythm. I managed to avoid eating any more bugs and discovered the joy of ~~tripping~~ running in the woods.

Bailey& I running last fall. Or falling last fall.

Recently a friend asked me to join a group that runs for those who cannot. It is called I Run 4. This is a great non-profit that matches one runner for one buddy.The idea was sparked when the founder, Tim Boyle, began dedicating his daily run to a friend who was physically unable to run. They created such a bond a movement was born.

My friend’s daughter is a buddy. Her runner sends not just the child, but the family encouragement and emotional support to get through days that can be overwhelming. In return, my friend’s daughter provides a smile, unconditional love and gratitude that someone out there care enough to run with her spirit. She also provides the runner with a reason to get out there and run when it would be easier to hit the snooze button.

Thus, a new village was created for my friend.

https://youtube.googleapis.com/v/zM56CoucRm4&source=uds

Here’s the thing though, not enough special families know about the program. There are over 3,000 runners looking for their buddy! Buddies are those with physical or mental handicaps. Persons of all ages who are willing to be the inspiration for the runners.

If you are in need of a village, of some support or you are just looking for a way to inspire someone, please consider signing up your child or adult with special needs to be matched. Follow this link: http://www.whoirun4.com/match-me/ to find out more information. There is no cost to join, for the runner or the buddy.

The runners are waiting to be a part of your village. Are you ready to be part of theirs?

The nicest thing some one ever did for me was to be my village and allow me to pay it forward.

And that is how I finished the sentence, the nicest thing some one ever did for me was….

**This post was not paid for/sponsored by IRUN4. I will not be moved up quicker on the buddy list (darn) unless more potential buddies decide to join the program. I did receive permission by IRUN4 to use their links and information to promote their program.

What happens…

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What happens when you begin to lose faith? In perspective we haven’t been on this journey long. Five years is nothing when compared to other children’s battles. Having a child undiagnosed with unexplained ailments compared being a parent whose child is fighting a life threatening illness is insignificant in comparison.
I apologize to all who read the Dr. House post and the Poor Me post. I promise I am not just regurgitating, or wallowing. I was just hit, yet again, by the bat that is a doctor who passed the buck.

I feel foolish and selfish for even getting upset. Let alone discussing losing faith. I try to keep this blog upbeat and fresh. I hate wallowing, repeating myself. But I am struggling. I am second guessing myself. I am wondering if I am the mom who cried wolf.

Why am I upset if not one of the five doctors I have contacted do not think it is significant or alarming that Boo is having swelling in her arms, hands, feet and legs?

So what do I do when I begin to lose faith? I get pissed. Seriously pissed. In all honesty I also had a healthy cry, a text-fest with Tia and a glass of wine. Maybe two.

But I got pissed and I decided that it’s not okay. I’m okay with Boo being undiagnosed but I am no longer okay with cardiology telling me to call rheumatology who tells me to call the cardiology who tell us to have our Pedi order a test.

Which she does and then that test is cancelled by radiology who doesn’t think it is necessary.

Because really, why should we investigate why a child is having intermittent swelling in their extremities for no reason?

So I got pissed. I did some more research (cause I have spare time) and found another specialist to contact. I am making cardiology see her next week and not leaving until he refers us some where. Any where.

I have reached out to two different “Dr. House” type doctors that are not local but I don’t care. I have e-mailed yet another doctor whose blog I read to ask for a recommendation. I found through my own searching of Children’s Hospital a center that deals with disorders of the vascular system.

I am not giving up. I am not crying wolf. I am not waving the white flag.

Some day. Some how. My child will have a doctor look at her as a whole child and not say call another doctor who will then cancel a test.

Just because her various ailments are not deadly doesn’t make them any less significant. They just make it easy to put into perspective. I know what Boo is experiencing isn’t life threatening. But it is impacting her life.

And that’s enough for me to get my big girl pants on.

Some people lose faith and curl up in a ball. There is nothing wrong with regrouping. Me?

I get pissed.

Thank you to everyone who reached out last week. Who gave me ideas, support and were just there being my village. I am using all of the tools you give me to stop wallowing and instead remembering the warrior mom creed:

You will not dismiss my child. She is too important.

Okay, if it’s not our creed it should be.

Therapy with love

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Every month we have “workshops” at Boo’s school. It is a time when we get to be at her school for an afternoon and observe her various programs. All of her therapists are there, along with the head of her program. We find it a very rewarding, if sometimes heartbreaking, experience.

It is an opportunity for us to ask questions. To provide input on what is happening at home and seek advice. We are able to see the techniques corrected by the head of the program and adapted in ways to promote Boo’s best chance for success.
Success, though, is hard fought. The yesterday afternoon Boo refused to do her program. It was simple really, she just had to answer a question.

For whatever Boo reason there is, she refused. Simply refused to comply. David arrived at pick-up, her tortured therapist explained that Boo wasn’t being compliant. The first time for this particular therapist. David couldn’t wait, Boo had after school therapy. According to him, he put her in the car. Asked her the question and not only did she reply…

She replied with a grin. Repeated herself just to make sure David heard her.

Round one: Boo

Today I drop Boo off to her integrated preschool and am stopped at the door. Instead of going into school she is taken to her SPED program where they will repeat the program until she complies.

I try to understand it. That they cannot let her ‘win’. That this is important because it will matter one day that she answers a question when asked. For her safety she must comply. It is not acceptable to not respond to a teacher, a policeman, me. Boo must begin to understand that it is not up to her.

I wouldn’t put up with it with Abby, for example. If a teacher asked Abby her name and she refused I wouldn’t say, just let her go play. I would hold the teacher and Abby accountable.

But it’s Boo.

Part of me is proud of her stubbornness. Even as it frustrates me. Her stubbornness has given her the determination to roll over, sit up, walk and run. Her stubbornness has allowed her to become a verbal child, overcome her fear of sand and open doors that should have remained closed.

I’m also overjoyed that this behavior is happening at school. I always feel like a hypochondriac when I attend workshop and say Boo is exhibiting a behavior that she never repeats for them. It makes me happy to know that she is feeling comfortable to let loose at school.

Boo went to the SPED classroom with her therapist. I went to work worried. Both for the therapist and for Boo.

Eventually Boo complied with what her team was asking her to do. It took almost an hour an a half, but she did it. Boo never understands that it hurts her therapist when she is being stubborn. That at five years old she has the power to break our hearts because we want to play, we want to be at Boo’s speed.

But for her safety we cannot give in. The ABA therapy works well for Boo. As long as it is administered with love and patience.

Round two: Therapist

When I picked Boo up from school she was the happy little girl we know and love. She hugged her therapist good bye. For the rest of the afternoon she repeated the phrase they wanted over and over again, without prompting.

Proving once again she is the stubborn girl we know and love. Doing things in her own time.

Round three: Boo

I’m sorry to all her team that Boo was challenging today. Thank you for loving her through it.

The Challenge Wall

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A few weeks ago I wrote about a new program at Abby’s school that celebrated Special Needs Awareness Month. I had to take down the children’s challenges as the program had ended (I did save a few) but thought you might like to see how incredible this project turned out.

We incorporated celebrities who are outspoken about their difficulties and placed the students (and others) challenges above, below, next and over them.

Each week the poster of the celebrity changed, but the children’s never did. To show that you might always have a disability, but you will always be you.

Then the kindergarten teachers took our idea and blew us away, having the students draw their challenges.

I am overwhelmed by how honest and forthcoming the students were. There were so many honest conversations at home, at school and on the playground.

This video was shown on World Down Syndrome Day. The one response from the kids? They wished it showed all disabilities not just Down Syndrome. But they understood the message: your friend is your friend. It’s as simple as that.

https://youtube.googleapis.com/v/5M–xOyGUX4&source=uds

I would like to thank Abby’s school for taking on this month long program and simply rocking it. The Challenge will be back next year and in more schools. I cannot wait to see how the kids evolve.