Category Archives: inclusion

100 Days

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).

The time I tried to make image number 1 and ended up with image number 2. Continue reading

When First Grade is more

I understand it has only been half a year. However I want to go on record (and brag) that the combination of Bridget’s special education teacher and (epic) first grade teacher is more than I could ever had hoped. The first grade teacher not only understands inclusion, she “gets” that Bridget isn’t the class pet there to give hugs but to be a part of her classroom. Though Bridget’s hugs are a hot commodity. Continue reading

Open House

Tonight is Open House at Bridget’s school. There have been other open houses, but like field trips I have always avoided them.  It never made sense, really, to go. After all Bridget spent most of her time in the special education classroom. I had such open communication that I did not feel the need to attend open house.  My feeling was that Bridget was the class pet. She came in for a few moments, like a puppy, gave hugs and went back to the special education room when “learning” was happening within the classroom.

It made somewhat sense, at the time. Bridget needed the directed lessons. Bridget cannot write her name, add or recite the alphabet. She is probably a distraction and as she is not learning in the traditional classroom the argument could be made that she be in the special education room. It worked, Bridget’s language exploded and she learned to read sight words.

Hard to argue with success. Continue reading

Why a special prom?

Tim Teebow’s foundation is doing something many think is quite awesome. His foundation will be sponsoring a prom for children with special needs. The event is being held in 50 different sites throughout the country.  I know I should be giving this huge thanks and appreciation but I don’t get it.

Why do children like Bridget need their own prom? Continue reading

TBT–Inclusion

Today’s Throw Back Post is from 18-NOV-2013.

Last year I was humbled and so surprised when Boo was invited to another child’s birthday party. I remember writing that she was included, that the children in her classroom see Boo and not a child with a  disability. But I worried that she wasn’t really a peer. It ended up being a moot point, as we were unable to attend the party due to a family commitment.

At that time a friend wrote to me and said it so wonderfully that just that day her children, both of them, proclaimed Boo to be their friend. That in children’s minds they are all peers. It really is just us adults that make the mistake of thinking otherwise.

I have remembered those kind words. You see, Boo was invited to another birthday party. Yes, I was kind of worried and spoke to the mom (who is also Boo’s therapist at school) but those words kept coming back to me. I decided to be honest and let her know my fear. That we wanted to attend, but I didn’t want her daughter to be disappointed when Boo, well is Boo. The party was being held at a gymnastics center, there would be obstacles and activities that she just wouldn’t understand. She might become overwhelmed or disruptive. I honestly didn’t want Boo to detract from another little girl’s first ‘for real’ birthday party.

Thankfully, the mom completely understood and reassured me that all would be fine. I’m sure it helped that she works with Boo a couple times a week!

We went and Boo had a great time. Sure, she didn’t participate like the other children. The teenagers running the party had to pay her more attention. They were accepting and kind. I only had to rescue her twice when she got overwhelmed. The older children attending the party made sure she was safe and the youngers ones just ran around her.

party girl

But she had fun! She ran around the obstacle course in her own manner. She ate her cupcake (and tried to eat the child’s next to hers). She watched her friend open presents (and tried to steal them). She squealed at the Princess goody cup and stickers. She proclaimed HAPPY DAY and HAPPY CAKE to her friend.

She was a typical kid having fun at a birthday party.  And just like that typical kid, she barely stayed awake for the ride home!

IMG_0773

I am so thankful that last year a kind friend planted the seed: that adults see the disability not the children. I realized as I was writing this post that four years ago I never imagined this day. THIS day that Boo would be invited to a party not because of inclusion but because of friendship.

A happy day indeed.

 

Name change

At the beginning of the summer we took Bridget to see a Specialist 20 hours away from our home in the hopes to find an answer to Bridgetitis. We had gone on a search for our own Dr. House. We allowed them to perform Exome sequencing, where Bridget’s DNA would be (in layman’s terms since I really am not a scientist) broken down and reviewed by computer strand by strand allows the scientist to discover where the gene may have gone awry.

We got the results. Finally. Continue reading

I wish

Dear Abby,
Today you started fifth grade. I’m amazed by you. You still retain the little girl I love as you grow into a preteen. You are not perfect, but neither am I. Although I wish you were not such a picky eater I know that, like me, you will one day eat a meal without me saying JUST TRY IT.
In other ways you are too perfect. It is like you were created just for me. You make me laugh. Although you refuse to make your bed, you make Boo’s for her every morning. 
I am amazed by your kindness, your patience and your Abby-ness. 
You astounded me at Welcome Back Night at your school. When Boo was upset because you were going off with your friends, you came back. You took your sister by her hand and introduced her to everyone you saw. You navigated stairs (and I am sure stares) with your sister. You took her to the bathroom and assisted her. I do not know any other child your age that would help their sibling in the bathroom. Or include her with your friends. Help her drink out of a water bottle or hold a piece of pizza that she wants to eat but refuses to touch.
You made my heart swell ten sizes too big when I overheard you say, this is just what big sister’s do.

What amazes me is that I never have to ask. EVER. You just do what you do. I do not know what Boo did to get such a fantastic big sister. But I am very thankful.
As you grow you continue to amaze me. I love that you still want to hold my hand. That you still need me. Too soon I know the day will come when I will embarrass you with more than just my killer dance moves. I worry about that day. The day when you are no longer mine.
I want you to know how special and unique you are. How proud I am of you. When I see you interact with adults and your peers. You have kindness within your soul and you never hide it.
Thank you for all that you are. As you enter fifth (gasp!) grade I have five wishes for you:
1.   That you surround yourself with friends like you. Friends that are kind, forgiving and have empathy.
2.   That you do not fall into the tween trap of boys, music and makeup before you are ready.
3.   That you remember it is okay to march to your own beat.
4.   That you keep one foot in the magic and one foot in the discovery.
5.   That you hold my hand just a little longer.

Love,
Mom

TBT JUMP!

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


Ready, set, go

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!

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!

The most amazing thing my body has done is….

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. 


Finish the Sentence Friday

TBT–Out of the Mouths of Babes

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.


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

          What’s that? Abby 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, Abby 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, Abby 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”.


Abby 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 Abby. 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. Abby 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 Abby 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 Abby and she can then teach her peers. But neither Abby, 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. Abby thought the teacher should have let the kids know. But by privacy laws, they cannot.
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 Abby 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 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.

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.