Category Archives: comfort

My Challenge: Eric

I consider myself very lucky today. I have read a lot about autism from the perspective of the parent, the teacher, the doctor, etc…but today I want to introduce you to Eric. A young man who recently graduated high school and entered the work force.

My Challenge: Autism

My name is Eric and my challenge is having autism. Sometimes I have a hard time coming up with the words to say what I am feeling. Sometimes I think people are acting a certain way for a certain reason and my mom and dad tell me that it is probably not for that reason.

I graduated from high school in May of 2013 and I did a lot of volunteer work. I finally got a paying job last month and now I work as a dishwasher three nights a week. I really like that I’m finally getting paid. I am looking forward to my checkbook balance going up. One day I would like to own my own car instead of driving one that my mom and dad own.

I like being able to drive myself and get around. I’ve been driving for two years now and I haven’t had an accident. I am a very good driver.

My favorite things to do are golf, bowling, watching movies, hanging out with my cat, working puzzles, building models and making things. I created this marionette puppet out of pipe cleaners.

I thought it was pretty cool and brought it to school to show off.

I need people to be willing to explain things to me different ways so I can understand, but then I am just as capable as any other teenager to do jobs. I like being useful at home and at work.

It is a challenge to have autism and sometimes I wish I didn’t have it but I am learning to live with it.

************

Wow. Eric. Just. Wow. Thank you for being so cool and honest about living with Autism. How it makes you, well, you but it also changes how the world perceives you. Here’s the thing, though. Almost every one of us knows some one with Autism. They are learning next to you in school but then they grow up. Just like you. They get jobs, they have a fulfilling life. A person with autism has just as much impact on the world as one who doesn’t, thank you Eric for showing that. And good luck on your new job!

To find more information about Autism, please visit The Organization for Autism Research.

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

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

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.

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.

Dear Abby

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Dear Abby,

When I had you I was terrified. The hospital nurses actually wrote, failure to bond in our chart. I was so sure I was going to fail you. Or worse, hurt you. You were an emergency c-section because (and I quote a doctor here) my body wasn’t meant to survive childbirth. I thought that meant I wasn’t supposed to be a mom.

In all honesty you were all I needed. You taught me how to be a mom. Not a perfect mom by any means. I did not think I had the love, patience or endurance for another child. You wanted a little sister so badly. You even had an imaginary friend whose name was simply “imaginary baby sister”.

Then there was Boo. From the beginning you at just five years old were my rock. You, my dear sweet child, showed me that I was strong enough to handle two daughters. You, my sarcastic truth-teller were there to keep things in perspective. You, my great educator taught others how to care for Boo.

The time you told Dawn that Boo couldn’t have peanut butter because she was allergic to dairy. The time you told a teacher that Boo was perfect, she was just in the hospital. When you taught a friend that being having a sister with a “funny pattern in her brain” just means that your sister takes a little longer to learn things. The countless times you practiced “I LOVE YOU” with Boo never knowing that is my secret desire for her to tell us she loves us.

You, Abby, are my hero. I wish I had your grace, your patience and your sense of self. You are confident in ways I can only strive to be at 40+ years. Your imagination astounds me. You are so brave, trying things that would normally terrify me. You are your father in the ways that make me love him. And in the ways that make me want to strangle him. You have an old-world soul mixed with a new-world outlook on life. You are me in the ways you are picky about eating food and in the way your sense of humor aligns with my own. You are so beautiful in your smile, your laughter and yes, your sarcasm.

On Saturday morning, I awoke exhausted. I lay in bed and listened to Boo over the monitor at 6:30 am. She was gleefully calling your name. As I ~~got out~~ pretended to get out of bed to get her I heard another voice. Yours. You entered her room and quietly said, “I’m here”. You then proceeded to take her out to the living room. You got her IPAD and gave me another hour of semi-rest. You got her muffins and only called to me when her diaper exploded.

Mom I’ll do a lot of things but I won’t take care of that!

That afternoon you received your first phone call from a classmate. You went on your first ever sleep over where I did not know the parent. I didn’t sleep that night for another reason. I was worried of course. But also marveling over how quickly a decade has gone by. How the little baby I was terrified of now completes my heart in a way I never imagined. The house is empty without your presence. I am astounded by how you have grown into such a sweet young girl soon to be tween. The excitement in your voice when you called to say good night. This is the girl you would be, maybe, if you didn’t have to tailor your life to your sister. Not that you complain, ever. But I promise you, I know the sacrifices you make for Boo. That you cannot join girl scouts, after school activities or miss birthday parties because we have Boo-centered appointments.

So thank you, my sweet Abigail. For being you. For giving me an extra hour of dozing. For giving me peace. For sharing your dreams. For giving Boo your unquestioning love. For just being your awesome self.

Keep living the dream, my Abby. When you obtain world domination this world will be a better place. I simply cannot wait to see the woman you will become.

Love,
Mom

PS you are still not getting a pony

It’s okay she is turning colors…

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Add another diagnosis to Boo’s repertoire. Okay, not another one but “color changes” has officially been updated to Raynaud’s Disease. With this polar vortex happening, her color changes have become more pronounced and she is for the first time telling me, “hands hurt”.

Which is good.

Because, first, she is aware of the pain. Second, she is telling us and third…okay no third upside. Before seeing the doctor we asked Boo’s teachers and therapists to have her skip recess. I know that seems unfair, because the girl likes her slide. However being the mean mom that I am I thought frostbite trumps love of slides.

We finally got an appointment to see her rheumatologist this week. We left at 6:30 in the morning for a 9:30 appointment and made it on time (yeah me!). This is typical for an early morning appointment. There have been days when we are an hour early and others when, well…when you wait three months for an appointment you better be an early bird and not the late worm.

Into the appointment walks Boo’s previous rheumatologist, the one that left us for Singapore was back. I did a happy dance. Seriously a happy dance. She told us that Boo Reynaurd’s. She further explained that typically they don’t diagnose it this young but obviously she has had it since birth. I honestly breathed a sigh of relief, we were not imagining it. Then the other shoe drops as she told me: However, due to her very low blood pressure we cannot treat her as we typically would medicate. The risk of bottoming out her pressure is not acceptable to the benefit of providing her relief.

Um, low blood pressure? We were just seen by cardiology. Remember, we don’t have to go back for five years! They never mentioned anything about a blood pressure issue. We immediately place a call into cardiology and in typical fashion hear back two days later.

It seems Boo has always had significantly low blood pressure. We were not told as it does not seem to impact her. Because she isn’t complaining that she is dizzy (would she know how to?) or passing out (obvious clue thank goodness) there is no reason at this time to worry about it.

But if she passes out be sure to call them ASAP. Dude, I’m not calling you I’m calling 911 if that starts to happen. Of course we are not going to medicate the Raynaurd’s if giving her medication will potentially bottom out her blood pressure and kill her. We will keep her warm and try to limit her exposure to the polar vortex.

I am struggling with the faith that some day, some freaking day, instead of being told: well, it isn’t normal but it doesn’t seem to bother her (or my new favorite: just keep doing what you are doing because it is working) a physician is going to say to me:

This is what Boo has and this is how we are going to treat it.

I’m old

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A warning to anyone under 30-ish and/or childless, this post probably isn’t for you. It contains a lot of truth but will probably make you either jealous or want to punch me in the throat for crushing your dreams. But here are some truisms that you just don’t get until you are on the dark side of 30 with children. Or (insert gasp) older with children.

1. Staying up past 10pm is an accomplishment not a right.
2. When your child comes home and tells you some one was mean to them you remember when you were not so nice and wish you could do a Back to the Future and kick your own ass. See, if you are 30-ish you have no idea what that means.
3. You will give the last Oreo to your child, but not your spouse.
4. At some point you will stop thinking you can lose those last five pounds and instead look at that C-section scar as a badge of courage.
5. Although you want to smack the childless co-worker who says she is “so tired” and “didn’t sleep” all night you won’t. But only because you are too tired to lift your arms.
6. Sometimes you wish life was a Jimmy Buffett song and could just change your Latitude.
7. While you will always love your children you do not always like them.
8. You don’t care if you just insulted childless couples by saying you sometimes don’t really like your children.
9. Although you love your parents, you will wish they remembered what it was like to have children NOT grandchildren when they go shopping.
10. You wouldn’t change one minute, one moment of heartache, one tear in exchange for the hug that just won’t stop. Even when your child is on the dark side of 30.

Got humor?

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How to survive life as a parent with special needs. Okay that is a lofty goal! It is hard enough navigating parenting with a child who is typical. Add in a few diagnoses and life can get overwhelming. But here is my go-to list for surviving the life I never expected.

1. Keep your sense of humor. If you have lost your sense of humor because it was drowned by vomit, poop, tantrums or tears Google comedian Steven Wright. How can you not chuckle at thinking: “Is it weird in here or is it just me?” (Steven Wright)

2. Make a daily goal. For me it used to be brushing my teeth at least once a day. Now it is making sure I get to work without evidence of Boo’s breakfast on my shoulder.

3. If you feel all alone in this life as a parent with special needs, you probably are. But it is your job to find support. To scream at the top of your lungs I NEED HELP. If no one hears you, let me know and I will add my voice to yours.

4. Make your child’s teacher/therapist/doctor your friend. Find out about their lives. Interact with those who your child spends most of their time. It will enrich your life in ways you cannot imagine and make issue #3 far less likely to happen.

5. Have a glass of wine. Not the bottle a glass.

6. Allow yourself to cry, laugh, grieve and rejoice all in the same minute. It doesn’t mean you’ve lost your mind but that you may have found it.

7. Find “ME” time. I know, I hardly ever do. But when I can run for just 30 minutes I come back a much nicer wife, mother and person. It doesn’t have to be every day (oh how I wish I could find me time every day) but make time for you.

8. You hopefully have a partner. The child’s mother or father. Guess what, they are your partner in this and they too are parents with special needs. So lean on them. Consult them. Do not do this all on your own and remember that partner is there. Make them take your child to therapy, a doctor’s appointment or do drop-off at school. For too long of a time I tried to be super mom, handling everything for Boo. Once I let David in our lives were much easier. If you don’t have a partner look at rule #3.

9. It’s okay to wear your sweat pants with a hole in the crotch for a few days in a row. Just try to remember to wear underwear so you are not arrested for pulling a Miley Cyrus at school drop-off.

10. Mix-up your friends. Try to anyway. Keep a healthy mix of parents with special needs and those with that normal kid who just talked back to them. It will make you appreciate your own little wonder. It will also help to make sure you feel alone.

11. It’s okay to get pissed off. Seriously pissy at this life you didn’t expect or prepare. And once you think you’ve got it handled someone will take the rug out from under you. Consider yourself warned. It is okay to question yourself, your God and your child’s doctor. It is not okay for any freaking one to tell you that you are not allowed to feel anger, grief or whatever emotion you may be going through.

12. Your house doesn’t have to be Martha Stewart Spotless. I will say the state of our life is directly reflected in the ~~mess~~ state of the kitchen. But I have stopped saying to people, sorry for the mess. Instead I say, This is how it always looks and today is actually better.

13. Remember you are more than a parent. You are more than a parent of a child with special needs. You are you and may I say you are doing a fine job of navigating this life the best you can.

Lastly, and this is important: Five years into this life as a parent with special needs I will say this is our life. What we make of it. A glass of wine helps. But what really makes me survive?

The friends who have stood by to hold, comfort and more importantly laugh with me. So find some of those and keep them close. They will help you keep your sense of humor and your sense of self.

My best dream ever….

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When I was little I had a very active imagination. My parents would put me to bed and I would spend hours imagining a life other than the one I was currently living. Sometimes I was a princess, sometimes I was a warrior and sometimes I was just a girl living a different life.

Each night it was the same. I would wait until Mom put out the light and close the door and I would line up my stuffed animals all around me. I would begin to imagine this fabulous life where everyone was equal and no one was sad.

As a child I did not know that prejudice existed. That children were born with different needs and talents. That adults would look at a child and judge. The parent and the child would be judged and found lacking. That you would be judged for who you loved, your gender or your skin color.

As an adult I wore blinders. I saw those who were disabled but did not see past their disability. I saw children who appeared disobedient and thought not like mine. I admit to not seeing a person’s color but not standing up to those who did. I lived my life on my terms, never seeing how we are all intertwined.

Then I had Bridget and my ideals evolved. A person who was a wallflower became an advocate. It took Kristi’s Our Land to put my dreams in perspective. She dreamed of a world of empathy and wonder. One where we looked at others with the imagination of a child. Not with the jaundiced vision of adulthood. A land where it would matter that our children had a disability only to make people stop and see the wonder that is this life we live.

My best dream ever? It is a dream where Abby & Boo’s story show the world what wonder and empathy look like. A dream where we judge others like we did back in the sandbox. Not by color, race, creed or gender. But with the opening line:

Do you want to be my friend?

My best dream ever is the one where our children never lose their empathy. That they continue to look at the rain with wonder. That our children make friends first and judgments last. A world where we shared the joys, the heartache and the triumphs of living a life full of blessings.

The cool thing is? My dream is coming true. I was astounded this week when not once or twice I was stopped on the street and told that this blog affected them. In a positive way. When someone sees Boo and looks with kindness and not judgement. That some parent knows they are not alone. A world when we are allowed to break and heal with someone there to help and not to judge. A life where others view Boo through Abby’s eyes.

My best dream ever is the one that never ends. A life where Boo shows others how to live in a world of empathy and wonder. Thanks for being with me on my journey to make my dream come true.

Oh and if you haven’t checked out Kristi’s Our Land yet I recommend the trip. It’s not about living with a disabled child. It is about living your life to be better. There are posts about body image, friendships and not judging a person (or yourself) before you meet them. Kristi is the blogging equivalent of Oprah’s AHA moment.

Thanks but I’d rather have a glass of wine….

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It was difficult to find the thanks this week. But I’m going to try because Lizzi is ~~hounding~~ encouraging me. But this week was full of floods.

The first flood was quite literal.

1. I am thankful that if a frozen pipe is going to burst in the walk-in closet on the second floor that my husband was there to go all handy and run around the basement for the shut-off valve.

2. I am thankful that the plumber who came over on a Saturday morning did not make us take out a 2nd mortgage to pay his bill.

3. I am thankful that Abby was there to feed Boo breakfast, snack and lunch while her dad and I contended with the flood.

4. I am trying to be thankful that although Abby wouldn’t change Boo into clothes or hey a clean pull-up. I am thankful nothing escaped the close to exploding diaper.

5. I am thankful that although I hadn’t showered before the flood there was still hot water left to take one after it was under control.

The second flood hurt more as this time I had a flood of emotions.

6. I am thankful for restraint when I didn’t smack the psychologist who said that saying Boo was autistic wouldn’t change how I would feel about my child. Although I did scream really loudly in my head NO SHIT HARVARD.

7. I am thankful for Boo’s PT not only babysat Boo & Abby so I could decompress but then stayed up until 1 am with me as we talked about Boo being labeled autistic meant to me, to Boo and more importantly to those responsible for her care.

8. I am thankful for Jenn who always knows what to say and for Tia who thinks she doesn’t always know what to say but is the first one there to lift me up. For Becky taking Abby on the best play date of her life so Boo could attend a birthday party.

9. I am thankful that when Boo attended a birthday party (her FOURTH!!!) and when the party host asked if Boo was “a little autistic” I could reply, yes but that is like saying someone is a little pregnant. And I said it with a smile not with gritted teeth.

10. I am thankful that while I spent another birthday at CHB this time it was with Boo’s cardiologist who told me that while Boo still had a hole in her heart it would not require surgery. Just observation. She doesn’t have to go back to Cardiology for FIVE YEARS. Can I get a WOO HOO and a FREAKING THANK YOU!!!! for the best birthday present ever?