Category Archives: developmental delay

Bear with me…

This is kind of a Jen Kehl type of post but I hope everyone bears with me. I listen to Pandora at work. This means music goes from Eminem to the Drop Kick Murphys to the Glee Soundtrack. The other day right after I heard a song by Eminem the music transitioned to Christina Perry’s A Thousand Years (theme from Twilight).

It was the instrumental version so I did not have the singer’s voice, just the one in my head. It occurred to me that the song while about true love, to me is about parenthood.

“The day we met, Frozen I held my breath. Right from the start I knew I had found a place for my heart…”

With each girl I literally held my breath when I first held them. I was so afraid I would break them. But I knew in that instant I had found my home. One where I would always be warm and loved.

“Time stands still. Beauty in all she (he) is…I will not let anything take away what’s standing in front of me…”

Time does stand still. It also goes faster than a heartbeat. But there are moments of parenthood where you are lucky to see for the rest of your life. Their first step, their first smile (for real, not the gassy one). The day they drive the car for the first time. The moment they find their true love. No matter how many times you hear “MOOOOMMMMM” and wish they had a mute button. It will erase the moment you heard them say momma the first time.

“And all along I believed I would find you. Time has brought your heart to me. I have loved you a thousand years. I will love you a thousand more”

Children don’t understand. I know I did not understand the depths of my parent’s love until I had my own. Time might march on. We are only “here” for a short time. But love transcends time. It transcends distance. You can have a child half-way around the world and yet your love reaches them.

Your child might be non-verbal. They might be in the midst of an epileptic seizure. They might just be being a pain in the butt teenager. Yet they feel your love.

For a thousand years you get to feel theirs right back at you.

And that is how deep I got into A Thousand Years until Men in Hats came on. So everyone grab your child and do the Safety Dance!

Actions matter

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It happens, a lot. A child will see a person/child different from them and in the loudest outdoor voice possible they will ask:

“Why is that person black”

“Why are those two girls kissing”

“Where are his legs”

“What is that thing in that boy’s throat”

As parents we think we are doing the right thing by saying “don’t look” or distracting the child. But it’s wrong. When you redirect the child, when you do not answer their questions instead of teaching empathy you are teaching them that there is something wrong with the other person.

You are teaching them that person is not to be looked at, to be approached and most hurtful to be friends with.

A child will befriend anyone. Heck, Abby will befriend a squirrel if they make eye contact. Before Boo I might have been that parent who tried to redirect her attention. My actions could be justified, I might have been hoping to spare the other mother embarrassment.

But why should she be embarrassed by her child?

Is she not supposed to leave home with her child who happens to be in a wheelchair? Is her child to be locked away like he is something to be ashamed? Should the father of a child who is deaf not use ASL because another person might stare?

I thought we moved so far from the time when children were put in sanitariums. Instead parents are made to feel they should not go grocery shopping or to dinner with their child not to spare themselves but to spare others. We begin making our home their institution.

I hope you remember my friend Julia from the What’s Your Challenge Series. This past weekend her mom took her grocery shopping. Julia loves being out in the car. She and her mom endured stares while shopping. As Lisa said, “you get used to it”. It was such a beautiful day they decided to stop at Starbucks. A young girl approached Julia, Julia lit up. Her mom, Lisa said hello to the little girl. Then sadly the girl’s caregiver rushed over. Took the girl by the arm and told her to “not to look” at Julia.

Like Julia is a freak and should not be looked upon. That is how I am sure her mom felt. I know it is how I would have felt. Instead of enjoying her coffee in the beautiful day, she took her daughter to the car and cried the whole way home.

In the interest of fairness I want to give the caregiver the benefit of the doubt. Even professionals that work with people who have special needs wonder if they can do it, can they take on this care. I am sure this woman thought she was sparing Lisa and Julia hurt by any questions the younger girl might ask. She might not understand that Julia understood a potential friend was whisked away. That her mom was made to feel unworthy. That her sister, had she been there, would have asked why the caregiver was so rude.

There is the rub. So many of the uninitiated don’t know what to do. Do you let your child approach and ask questions?

Here is the answer: YES! A resounding YES!

Because here is what makes children awesome: the question they ask might not be the one you would. But they open the door for you to approach the parent. We are approached all the time with Boo. Abby tends to take the questions from the kids. I am consistently amazed at how few questions are asked before acceptance is born. (My favorite answer of Abby’s: Her brain just works differently than yours).

Kids just want to ask the questions. It’s the parents who want the details. That is okay too.

Ask away. Do it with respect but ask. If you are not comfortable asking, how about just saying hello? You will be teaching your child an important lesson. That we are not all the same but it is our differences that make our community. You can teach your child what empathy and acceptance means without ever having to say a word. Or you can teach them the opposite, it’s your choice.

Your actions will show that Julia is not a freak. She is not something to be locked in her parent’s home. Julia is the miracle of her parents. She is the younger sister of K who adores her. She is her daddy’s princess, her mom’s warrior. She adores her two German Shepherds. She loves swimming, horseback riding and driving in the car. Julia has inspired a runner in the I RUN 4 organization. She is the reason why her runner gets up and runs every morning.

You should get to know her and others like her if given the chance. It just might inspire you to teach your child acceptance rather than avoidance. You just must learn something more about yourself.

My Challenge: Kayla

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This is Kayla. While I have never met Kayla in person I have come to admire her through her mom Michelle’s blog, Big Blueberry Eyes. Kayla loves to dance, act and participate in Buddy Walks. Kayla has not yet met a stage that she cannot dazzle.

Kayla has Down Syndrome and with that comes some challenges. Somethings are harder for her to do and some things take longer for her to learn. Yet having Down Syndrome doesn’t define Kayla. She is defined by her beautiful heart, the friendships she has created and the activities that keep her mom on her toes.

Thank you, Kayla for sharing your challenge. I hope one of these days to see you dancing with Boo on the beach!

There are over 400,000 persons with Down Syndrome in the United States. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm – although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all. To learn more about Down Syndrome please visit the National Down Syndrome Society.

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

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.

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.

Decisions not made

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The best decision I ever made was one I never would have, if given the choice. People make choices all the time. Those decisions have unknown consequences and unknown victories.
Had I been told while pregnant that Boo would be admitted to the NICU on her fourth day of life, that we would be told her brain was not developed and she would never walk, talk, jump, love or progress. That five years later she would still be proving to be a medical enigma, I may have made a difficult decision. I would have thought I was making the best choice for myself and my family.

I would have been wrong. So wrong.

Doctors don’t know everything, testing is not always 100% accurate. The doctors for boo were well-intentioned, but they were wrong. Yes, Boo hasn’t had a tranquil childhood. I have had fears that she wouldn’t survive. Fears that she would never have a life like Abby’s. I worried, lost sleep, became a master at using Google to find remedies, treatments and novel ideas. I became a warrior mom, an activist an optimist.

I broke and continue to break.

Every time I break I think of that Fellow who didn’t believe in her. That did not understand the absolute power of a warrior parent. I remember that moment and am thankful for those broken moments as they make me appreciate how unbroken Boo really is. Being unbroken means there are a lot of decisions to make.

The decision to bring her home from the hospital and not let them define her.

The decision to send her to a daycare that loved her, that transitioned to a school that adores and supports her.

The decision to allow surgery (or not).

The decision to provide intensive therapies when we were told they were too much for her.

The decision to let Boo defy expectations, not once or twice.

There are a lot of decisions I make with Boo. Some large, some small, but all must be thought out, researched and agonized over. Yet there is one decision I never had to make and am so thankful the choice wasn’t offered.

I realize that best decision I ever made was one I didn’t have to make.

Paging Dr. House!

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Recently I took Boo for a follow-up with neurology. The best part of the visit was when Boo hit the ALARM button in the hospital elevator. In a crowded hospital elevator. The day would have to get better, yes? We were only going for a routine follow-up.

Maybe with other children. But nothing with Boo is as easy as it appears.

I adore her neurologist. I trust her more than any other physician Boo sees. We had a long talk about the autism diagnosis and what it means for Boo. She asked about Boo’s chronic low blood pressure and is surprised that no one is too concerned about it. She asked about Boo’s chronic color changes and again showed surprise that no one is too concerned. That although her Raynaud’s is manageable it is odd that it presents so young and without any rhyme or reason.

I told her about Boo’s newest development: intermittent swelling. That her wrists and hands would swell for no reason. I had taken her to the general pediatrician but by the time I had made it his office she was no longer swelling. As the neuro examined Boo she agreed that one of her hands appeared swollen and asked about her legs. Um…she is always in jeans and sneakers. Honestly (my bad) I never checked. I did say that her legs do get “tight” but we have been stretching them.

Disrobing Boo her neuro said: She isn’t tight she is swollen. Very swollen. But it doesn’t seem to bother her. (That should be Boo’s theme song)

So a parent would think okay what do we do about this?

Her response: call some one else. Okay, not really. But she told me to follow-up with two of Boo’s other specialists. That this wasn’t really her field.

Deep breath. I called Boo’s rheumatologist and was told it (based on a phone conversation) that this swelling does not appear to be rheumatological (is that a word? If not I just made it up like undiagnosed) in nature to “give it a couple of weeks” and then go back to our general pediatrician.

I called Boo’s cardiologist and left a message. No return call yet, they must not think it is anything to be concerned about.

But I am. And I am frustrated. How can one little girl have so many abnormalities. Isn’t one enough? Does she really need 15? I’m thinking she is getting greedy.

So here is what I am looking for Dr. House. I am looking for someone with a medical degree to give a crap. I want them to look over Boo’s entire history. I want her examined from head to toe and not say they don’t know. We are okay with being undiagnosed. We are not okay with no one exploring why.

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Stop staring. I think to myself. Stop whispering. I think to myself. I know my child isn’t behaving. I know she is disturbing Mass. I know she just pushed your son. I’m sorry. I really am. But stop.

You don’t have to point. You don’t have to say that your children knew how to behave. That they sat quietly with a book. That they were polite and perfect. You don’t have to tell the waiter that dinner was lovely but you wish they would seat disruptive children in another part of the restaurant.

Trust me, I think that is a fabulous idea. Take the old smoking section of the restaurant, make that the adult only section. (Cause let’s face it the smoking section was always in the bar). Make a section where the families can sit. Where moms and dads can enjoy a meal they did not cook or do the dishes when the child didn’t even taste the meal.

Where they would not feel judged.

What I really want to scream out loud is WE ARE DOING THE BEST WE CAN.

It’s been a long decade, year, month, week, day, hour, minute. We are holding onto our sanity by a thin thread. You might believe that your child was a perfect angel. That they never raised their voice inappropriately. That they sat quietly in Mass. That they never pushed a friend or hit a sibling. Your child would never have colored outside the lines (or on the wall).

The truth is, just like childbirth, you have forgotten what it was like to have a young child. That you were once like us. Parents burnt out by work, family and homework. You are looking back at the good times of being a parent. The time when you son got an “A+” or your daughter kicked the winning goal.

You are forgetting the pain of doing fractions. The fight to brush their teeth. That beds will be unmade. That there are temper tantrums (sometimes being performed by the parent). That we are all tired, hungry and just done. So we went to a “family-friendly” restaurant for respite.

And got spite instead. As you sat in the booth across the aisle and sipped your wine. I did feel bad when Boo screamed (with joy, mind you) so loud over the pop corn you were startled and spilled your wine. At least it was white and will not stain. When you cringed because Abby was speaking in her outdoor voice. That your experience was spoiled by Boo hitting Abby because she wanted to use the crayon Abby was currently holding.

I get it. You were just looking for a night out as well. You were not expecting to be seated across a family whose children were really excited about cheese & crackers for an appetizer.

You could have ordered me a glass of wine, with a kind nod of a survivor who had been there, done that and survived. Instead you remarked, loud enough to be heard, that when your children were young they knew how to behave.

I really wanted to scream out loud, LIAR. Your children were probably spoiled brats or bullies or the neighborhood menace. But I didn’t. Instead I mentally thought how great it was that Boo enunciated pop corn for the first time. I blocked your stare of condemnation. I ordered my own (second) glass of wine and planned on tipping our waitress well, really well.

I promised myself that in 20 years when my children are grown and I am seated across a mother trying to do her best I will order her a glass of wine in your honor.

Tell me, how would you finish the sentence, What I really want to scream out loud….

3.5 I took the pledge. Will you?

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Is she going to be retarded? I asked the neurologist. Boo was 11 months old. She had two EEG’s and an MRI of her brain. They told us she had a “slow” brain pattern. That her development was delayed. That Boo would possibly need care for the rest of her life. That they don’t use the word retarded any more. They use intellectually delayed.

I had moved from wondering if Boo would live past her first week of life to would she be retarded in 11 short months. It took another year for me to evolve from retarded to delayed. To understand and feel that a word is not just a word. That it matters what you call people. Here is why that revolution matters.

The Merriam-Webster Dictionary defines retarded as “sometimes offensive : slow or limited in intellectual or emotional development”

Why is this “sometimes offensive”? After all the definition simply states that Boo is limited in intellectual or emotional development. That is true. That is not offensive. She is limited. What is also true is she is gaining. Limited does not mean stopped.

Here is why the caveat of “sometimes offensive” the dictionary also defines retarded as: stupid, obtuse or ineffective.

My daughter is not any of these. She is not slow, anyone who has had to chase her down a hallway in her attempt to escape knows that fact. She is not stupid. The moment you meet her you see the spark in her eyes. Boo is not obtuse. She is sensitive and caring. Boo is not ineffective. The change she has made in my life, her classmates lives and some of yours disproves that definition.

Words have power. Would you say nigger or faggot? No. Because you know in uttering those words you are hurting someone. So why is retard exempt? Because it is part of your vernacular, because you have always said it, insert an excuse here.

Last year during this campaign people told me that the word isn’t used often anymore. That this is an older terms those of us from the 80’s use. But that is untrue. It was used last Thursday in Abby’s school. The administration used a video depicting dyslexia. Overheard in the assembly of middle schoolers: they are just retarded and dumb. Whispered, of course. They knew the word was wrong. They knew the word was insulting.

They used it anyway.

When I asked the neurologist 5 years ago if my daughter would be retarded, I wasn’t being insensitive. I was not being derogatory or insulting Boo. I was uninformed. I was ignorant of the harm and tears this word can cause.

Maybe you can use that excuse too. You were uninformed. You didn’t know that a word could hurt. Then you met Boo. Now you are not uniformed. Now you know that a word can cause pain. I ask you, the next time you utter the word retarded picture this face:

And ask, would you say that word in front of her? In front of me? In front of her family? If the answer is no, then you have your answer to the question is the word retard is just a word.

When I first put this picture in this post I had the word RETARD stamped over her face. But the image made me gag. I cannot imagine my daughter as a retard (stupid, obtuse, ineffective). I hope the thought of RETARD over her face makes you shudder as well. I took the pledge, will you?