Monthly Archives: September 2014

My Challenge: Mardra


I would like to introduce you to Madrathe mother of a wonderful man who has Down Syndrome. I believe every parent of a child with special needs has the same challenge. 


My Challenge: I am afraid of monsters.

As long as I can remember, I have known that a monster is not the lifelike replication of a furry puppet. I’ve also never really been afraid of Frankenstein or Dracula style monsters, fantasies that were created to emulate the human condition, but in and of themselves began as a figment of a writer’s imagination. 

No, as a young girl and still today my fear of monsters is much more palpable, cynical and real.The opportunity to see and read stories of the monsters that walk among us are everywhere and every day. 

The news is filled with them.  One example that recently crushed me involved high school boys acting monstrously towards two of their innocent and more vulnerable peers. My stomach turns now and hollows; my heart pains as it beats living with the long minutes of rape, exploitation, jeering and confusion. I type through the tears for the parents of the victims, the anger they must feel, the shame, the fear…

I scold myself. I shouldn’t have read the article. The headline told me all I didn’t want to hear or believe. 

What am I supposed to do with these images, at once swimming among and drowning my own thoughts? This being one of the many examples of monsters that look like normal human beings, living among us. And they are everywhere. Both in power and searching for power. On the streets and online. In my imagination and in real life. They have always been and always will be.

For the first 21 years of my son’s life, we lived in our own shell. I went to work and home and kept a close circle of friends. Marcus went to a private school where I felt he was most safe while learning and growing. From the first days of his life I feared that his facial features would make him easily preyed upon; I felt compelled to focus on preventing the possibility of any ill-intentioned creatures causing him harm.

The word overprotective has been lobbed in my direction and that too carries its own weight of parental guilt and consequences.

Less than two years ago I decided to put in a window to our closed off life. I finally embraced the 21st century and Marcus and I claimed our own little corner of the World Wide Web. We launched Grown Ups and Downs, with much thought, trepidation, and coffee.

So far, we are a very small clan and don’t attract much attention from monsters. But I know they are there. And, that is part of why we are there, too.  A song I often refer to for courage is “Hands” by Jewel: For light does the darkness most fear.



I don’t have a great arsenal of defenses against potential monsters. I don’t have a superhero shield or a sword of steel. All I have are two things: language and love. Marcus inspires me every day by sharing his stories and his humor. He gives me his love unconditionally and he accepts me when I am curled up and hiding under the blankets. He reminds me when I rant that, “No one is perfect, Mom.”

Monsters feed themselves lies and vomit it upon others. Monsters are even afraid of other monsters, which is why they huddle in packs, and commonly use whatever means available to dull their human senses.

The days when fear pulls on my shirttail and coaxes me to hide, Marcus shows me how his light can shine and warm others who may also be afraid. He tells me dreams the monsters could not believe, and we climb towards those dreams.

I know the monsters’ presence will grow with us and there are days they strike. There will continue to be days the when monsters touch both those I do and do not know and leave me bruised and shaken in their wake as well.

I do not foresee a day when I won’t be afraid of monsters. And monsters, true monsters, will not be changed.

But others, those who are looking for kindness, reasons for optimism and good news. Those who are looking to learn and have opened their minds to a spectrum of human possibility, it is for them that Marcus’ light shines the truths of love and life’s potential. His enthusiasm and ambitions take a little bit of power and energy from the darkness monsters feed upon: ignorance, fear, and misunderstanding. It is with Marcus by my side that we aim to show from our little corner of the world a life of innocence, of ambitions, of love, and try to shine brighter yet these things into the world. These are the only weapons we have and we wield them with hope.
In the end, only kindness matters…
 
Marcus and his mom Mardra

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When Mardra sent me her Challenge I immediately thought of Robert Sayler. Then the horrific parody of the ALS Challenge was done to a young autistic man. Yes, cruelty happens, but when your child is unable to communicate, when their very being is something that can be preyed upon you live with another fear. I send Abby to school every day knowing she could be bullied, targeted and hurt. Yet I know I have provided the tools she needs to alert myself, her father or a trusted adult to keep her as safe as possible. David teachers her self-defense and drills into her the need to be aware of her surroundings. Yet, I know with all the tools we give her a Sandy Hook, a 9/11 or a Boston Marathon could happen. Or worse.


With Boo the fears are different. Boo cannot tell me what happened. For example last week she fell and scuffed her knee. She told me her therapist at school “pushed slide”. I knew that probably didn’t happen. When I asked her therapist the next morning, I said Boo said you pushed her off the slide. David was there and said no, I was walking her to the car and she tripped! We all had a chuckle over it. Boo bruises easily, she is always getting a bump or scratch. Recently she had one on her back. It turns out Abby dropped her. No biggie, but reading Mardra’s challenge reminds me that some day it might be. That Boo needs the language because one day it could be her that some high school bully pranks with a bucket of feces. Or worse. If you have time, check out Mardra’s article on the Huffington Post. It’s not just the monsters out there, it’s the people who say our children need to be hidden. 

You can find Mardra and Marcus on the Grown Ups and Downs Blog, Facebook & Twitter.

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

TBT-where would I live?

Today’s Throw-back Thursday post is actually a post from a Finish that Sentence Friday Prompt I answered on April 11, 2013. The prompt was: If I could live anywhere I would live…”

Here:


Time for Finish that Sentence Friday. And today’s snippet is….

“If I could live anywhere I’d live…”

Now I know you are expecting me to say a tropical island with a nice cabana boy who brings me wine at regular intervals…and yes that would be super cool (or warm, I guess). But if I could live anywhere?

I would live in Abby’s brain. Ew, gross you might be thinking? Really who would want to live in squishy brain matter….But I think it would be super cool.

I would be able to talk to fairies, sprites and nymphs (and I would also be able to figure out why they are different). I could look outside and see the fairy houses that were created overnight rather than looking at the leaves that have overtaken my flowerbeds. Instead of seeing a messy bedroom I would see a horse farm in one corner, a Barbie paradise in another and the oh so important stuffed animal corral on the top bunk. The only part of Abby world that Boo cannot be destructo baby in.

Then there is  the man cave that Abby has taken over. The playhouse that is where the American Girl Dolls live and have high adventures. Under the pool table? That’s not a pool table MOM (exaggerated sigh) that is where Tinkerbell hid the leprechaun so we can get his gold (thank you Auntie Krafty K for that trap by the way). Oh and that dollhouse? That is where Periwinkle lives in the winter. She travels (who knew) between Allie’s room and the man cave dependent on the season.

I don’t have a summer home, let alone a winter home. Yet Abby’s fairies have vacation homes, condos and leprechauns who give them gold. Maybe I can start charging them rent!

Yes, it would be awesome, wicked awesome, to live in Abby’s brain. If just for a day.

Most importantly, my mind would not be concerned with magnets, every day math or math facts! 

Time Traveling

If I could go back in time…I wouldn’t. I just wouldn’t. First of all you could not pay me enough to relive my youth. Or my high school years. In fact I think my mom would pay YOU not to make her relive my high school years.
I would be afraid to go back in time. Life is confusing enough. I am by no means where I thought I would be on this day in September. Yet I am so happy to be here. Sure life, well, sometimes sucks. Sometimes I wish my life was easier. With a chauffeur, maid and private island.

But if I could go back to one moment in time, not to live my life over but to improve the lives of moms today then I would want to go back to that moment when some well-meaning person messed up life for the rest of us. For example:


When some idiot mom invented the Elf on the Shelf and then decided to tell other moms. I would a moment to explain to her exactly what torture she would be inflicting on the rest of us. 

I would also find the same fool that decided to make St. Paddy’s day not about the Irish drinking holiday but about building a freaking trap for a leprechaun. I would remind them that this is an adult holiday. The children get Halloween, Christmas, Valentines Day and Easter. Leave one for us. We deserve it.

I would go back and find the person who thought it was a good idea to buy Abby a Snoopy Christmas piano that David now plays every freaking time my mom calls. 



I would figure out who invented Play-dough, Goop and Silly Putty. I would explain to them in the future my kid is going to smash it into my brand new wood floors. I would encourage them to think of something else to do with their time.

I want to know who thought sparkles were a good thing to put on a little girl’s outfit. Did they not realize in the wash the rest of the clothes would become covered?

I would go to Walt Disney and thank him for this moment:



When I saw joy and interest and a little overcome fear in Boo’s expression as she watched Frozen on Ice. When I saw her sit through the entire show, gasping and cheering and enjoying. When I saw other little girls dancing, singing and showing their joy and it didn’t hurt.

I would go back in time and thank the people who made this day possible: the doctors, the therapists, the family and the friends. 

Just don’t ever give the child Play-dough.












Sleep?

Last night when I was up with Bridget, I thought to myself…I love this. I absolutely love just holding her and laying on the couch until she calms down and falls back asleep. I love that she can sense when I lay her back into her bed. I love that she is so small and petite (okay short) that carrying her isn’t a problem.


I know I should not enable her. I know I should just let her cry it out. And most times I do. But last night I just didn’t want to. And of course I feel some guilt. I hate when Abby wakes up in the middle of the night and wants to sleep in our bed. It’s not that I dislike Abby, but the fact that sleeping with Abby is like sleeping with a boxer. She is all knees and elbows.

Bridget though, Bridget hugs you with her entire body. She wants to nestle her head right under your neck. She knows the difference between my standing with her and sitting. Without a word she knows how to tell me what she needs to be comforted. 

For almost the first 2 years of Bridget’s life I would put her to bed and she would fall asleep. Then anytime between midnight and 4 am, when I was in the deepest sleep possible, she would awaken. Screaming. All I could do to comfort her was to lay on the couch in a way to make sure she was safe and we would doze. It got to be that I just left the pillows and comforters behind the couch so they would be in easy reach in the morning.

Then shortly after she turned 2 and a half, one night I got tough. She was going to comfort herself back to sleep. It was a month of torture.  The “experts” totally lie when they say a child will cry themselves to sleep after 10 minutes. But the month was worth it. Gradually Breidget began to sleep through the night, most of the time. And now when she wakes up she will coo herself (and sometimes cry) back to sleep. I have learned her signals. If she fusses for more than 5 minutes there is no way she is falling back to sleep. She will stress herself so that her reflux acts up. Then she is in pain, something I will not withhold comfort from.

But those nights are becoming fewer and fewer. Thank goodness, Boo is sleeping better. Although I still wake up in the night sure that I have heard something. And on the nights now when I know she cannot comfort herself, I rush into the room and will forgo any thoughts of sleep.

I may never know why Boo wakes up screaming in the night. Sure I can guess. It might be bowel issues, she might be in pain, she might be scared. But sometimes, like last night, I think she just needs her mom’s arms around her.

And I am more than okay with that.

My Challenge: Allie


I “met” Allie through the world of the Blog. I am not quite sure how we stumbled on one another but she continues to crack me up with the escapades of her four children, husband and life in general. On top of it all, Allie is an autism activist, an author and a woman with a sense of humor similar to my own.

Her challenge: Organization.

When Allie first sent it to me she wasn’t sure if it was the type of post I had in mind for the Challenge series. After reading her words I was nodding my head and I think you will too.
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My Challenge: Organization



I have four children, with four different personalities. They attend three different schools and each has a different extracurricular activity schedule. I have a husband and a home to take care of. I have freelance writing commitments and a blog. I like to exercise and spend time with my friends. However, there are only twenty-four hours in the day.
An essential requirement of “doing it all” is being organized. Yes, being organized is a must-have quality in people who have much to and many places to be. At one time, I was organized. I really was, although few people in my life today actually believe it. When I was in my early twenties, I attended college full-time, earned good grades, worked full-time, exercised religiously, was responsible for my own personal maintenance and managed a very active social life. I slept little and rarely suffered for it. I was excellent at juggling and few things slipped through the proverbial cracks.
A few decades later, I’m a hot mess – getting by on a wing and a prayer. I’m constantly losing my keys and/or phone. I can’t find my glasses when I need them. I go to the grocery store with the intention of buying everything I need for dinner, leave my shopping list at home and then upon my return, realize that I failed to buy the main course. I routinely forget appointments or fail to be somewhere on time, and show up at events without the required tickets (more than once).
I married someone who’s the opposite of me. He’s a man with a plan who believes that everything has a place and he knows where that is at all times. He has an organized and accurate calendar that dictates his schedule to the hour and three ring binders for the projects he’s completed. He rarely leaves his office at the end of the day without emptying his inbox.
Here is a picture of my office.

How did this happen to me? I no longer work full time, or attend school. You’d think I’d be able to get my act together. Nope. So that leaves me with little alternative other than to blame my children. It’s all their fault. In addition to maintaining my own active to-do and want-to-do lists, I now have to manage the lists of four other people, and deal with all the associated paperwork and transportation.
The first step to solving a problem is admitting that you have one. Dear world, I have a problem.
Yes, I am aware of my weakness and over the years have made various attempts at improvement. I’m on a never-ending quest to “get organized.” I didn’t realize how never-ending it was until a friend pointed it out to me when she needed something that was in my office. The door was closed and before I opened it, I made my disclaimer that I was in the process of organizing. She laughed at me and commented that I’m always in that state. Yeah, I was a bit embarrassed.
It doesn’t help my situation that my office is the family dumping ground. All the school agendas and forms get placed on my desk. Need something to be returned to the store? Put it in my office. Shipping presents out of town? Oh, just pile them in my office. Working on a school project that requires lots of paper and glue? We don’t want that cluttering up the dining room, do it in my office. Items that take up residence in my office have a good chance of disappearing. Currently, the list of items missing-in action includes a baby shower card with a gift certificate inside. If I’m being honest, I should confess that the card is also a few months late. The baby has already been born!
I bet you didn’t know this, but there’s a bounty of organizational resources available to us on the internet. In the last year, my get-my-act-together focus has been in the blogoshere. These sites are so pretty and helpful. Many of them offer free “printables” that will help you get organized with lists, calendars and do-it-yourself (DIY) projects. Side bar: not to go off on a tangent, but those of us who are disorganized, typically are hopeless at DIY! In the frenzy of my getting organized excitement (and panic) last year, I dutifully printed off everything I could find. I went so far as to actually file the documents away in three ring binders, where they still reside today (mostly unread). At the time, I actually envisioned a future where I’d kicked my bad habits and boasted about the newly organized Allie in a blog post, with stunning before and after pictures.

The blog never materialized. Sometimes I think I need to take it a step further and actually hire a professional organizer – or a life coach. But that route can be costly. Still, there’s something to be said for accountability. I did rope my husband into a DIY project last year for an organizational mudroom wall and it looks great. The project turned out to be a lot of work for him, so my guilt has motivated me. Any changes I’ve made over the years have been helpful, but short-lived. I do have a new filing system I’m quite proud of, courtesy of a blog, but it is the exception to the rule. I don’t know if it’s boredom, ADD or the chaos of life, but I always, eventually, seem to go back to my scattered ways. Why is this?

It makes my life so much harder. I also feel remorse about the harried example I’m setting for my children. Does anyone have any suggestions? I’m open and ready to listen, it’s just the execution phase that may trip me up.

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As I said I was nodding my head at everything Allie shared. Last weekend I managed to schedule a camping trip in one state, a performance of Frozen on Ice in another state and we managed barely to do all of it. I have also shown up at birthday parties a week early or late and been known to send a thank you card a year too late (to my mother’s dismay).

Thank you, Allie for sharing. I encourage everyone to follow her of at Latch Key Mom. Her posts are always uplifting and I believe most of you will read and say Hey this could be me!

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

This week

Today I am very thankful. So thankful I am participating in the Ten Things of Thankful hosted by Lizzi

1. I am thankful for the friends who got what I was trying to say when I spewed venom earlier this week. That I would not trade Boo for the world but once in a while life becomes too much.

2. For Walt Disney & Company, I understand not one more parent wants to hear Let it Go but to see Boo’s face as she watched the Ice Show? Magic. Pure Magic.



3. For sisterly love.


4. That more people got the humor of Helicopter parent than were offended. Come on people lighten up, life is too short!

5. The I Run 4 group for their dedication and willingness to provide emotional support for families.

6. For M&M’s. Lame, maybe. But they are important to my state of mind. The fact that I can just eat three and provide amusement to others is an added bonus.

7. For older sisters willingly giving up their toys to their younger siblings.

8. For the friend that took Abby for a weekend of one-on-one attention. 

9. For this video right here that shows Abby is not the only sibling who loves unconditionally. 



10. And lastly, for this moment. This moment right here when Boo was a just a little girl in love with princesses and castles. 



The fact that she just tells us to OME ERE and look at the castle and not really play with it doesn’t matter. That she just holds the three punsel (Rapunzel) Barbies stolen from her sister, meaningless. What I see here is a little girl who loves Princesses just like her older sister did. That she made Abby bring this up from the basement and place it just so in her room. That Boo WANTED this castle, relayed it to her sister and made it happen. 

Some Milestones are different than others. This one is pretty freaking cool to me. That Abby grabbed my phone to capture it, amazing and so grateful my girl is so wonderful. 

Both of them.





”Ten

Dear Helicopter Parents, Snap out of it

Life is too short for me to be a helicopter parent. I’m involved. I’m on the PTA. I badger Abby over her homework, her flute practice and cleaning her room.  I communicate with Boo’s team (which is another type of parenting, not helicopter).  At a PTA event before school started the new Principal asked me if I was happy with Abby’s placement for the next year. I replied, I have no idea. In all honesty I didn’t even know that Abby would have two teachers this year. 

I do not place my child in the preferred teacher’s classroom. I do not say she has to have XYZ in her class. When Abby is 15 she will not be able to pick her boss. I think learning in primary school that you have to work for whatever teacher you get is a good lesson. Let her learn now at a young age how to debate, negotiate and comply with the person entrusted to educate her. 

Our town is going through an enormous transition in the school system. There have been a lot of changes, from pre-kindergarten to eighth grade. It has in both good ways and bad brought out the helicopter parent in a lot of the community.

In addition to the transition our school system has instituted new security measures and traffic patterns. It’s the traffic management that set my life is too short, snap out of it moment. Here’s the deal:

Previously if you drove your child to school (even though they could walk or take the bus) you would let little Patsy get out of the car and text, email, play words with friends watch her like an Eagle Scout as she walked the 25 feet from your car door to the front door of the school. 

You do this because there is an off-chance little Patsy could be abducted by aliens on her way into school.

The new system (which is working at two other schools in town) is that you now drop your child off and drive to work, the gym, wherever you go when your child is at school. A teacher (or two) directs the children and keeps and makes sure no one dawdles on the way to class. You do not stop and hold up the 25 cars behind you who are trying to get somewhere on time. You can, if you wish, park your car and get out of it and walk your child to the sidewalk where you can watch or walk with them walk into the school.

Of course Facebook lit up brighter than NYC on New Year’s Eve with parent comments. One person wrote that they asked the administration if the school was now taking responsibility for all the kids from the moment they are on school grounds without a parent present, she danced around the question like Sugar Ray Leonard, never actually answering the question”.

Hmm…really? This is a question posed to the school administration? I think they “danced” around the question because they were not allowed to say: Look you fool, we take personal responsibility for every child in our system. It doesn’t matter if they are walking into the school or out of it. It doesn’t matter if they are in gym, the playground, the art room or in the classroom.

Unless you home school (and you are my hero if you do) a parent is not present with their child 24/7.  If you are seriously worried that little Patsy is going to come to harm walking from your car to the door of the school there are bigger issues. Just think what could happen while you are not there:

They could get colored on in art! Or worse eat the art.They could fall from the slide on the playground.They could need a band aid.They might color outside the lines in kindergarten.They might make friends, get dirty, learn to negotiate and be a little independent.


Oh the horror, they might make friendships without you. I think that is a more likely fear than the alien abduction, personally.

If you want to become involved in the traffic policy, the transitioning of the schools, school security I say fantastic! At the first PTA meeting of the year we had 18 attendees out of a school of 500+ children. Of those who attended: 3 from administration, 1 teacher, the E-board of the PTA, the past PTA President and VP and 6 other parents. After Sandy Hook we held a school safety meeting 12 parents attended. It takes more to keep your child safe then watching them walk from your car to the front door. 

I know the excuses: I work, I do this or that I don’t have time let me wave the flag of BS. I work full-time, I blog, I’m active on the PTA, I take care of two active girls, I attend Boo’s doctor and therapy appointments, I take Abby to her Flute and Riding lessons and I remember to be a wife sometimes.  There is time to get involved it just takes creative planning.

My point, to fellow parents, is relax! Life is too short for you to worry so much. If you are a child of the 70’s or 80’s you played outside (alone), you walked to school (alone), your parent did not handpick your teacher (or friends) and you survived. Yes, I understand we live in a different world. A world of 9/11 and Sandy Hook and Columbine. I agree we have to be vigilant, we have to be involved and aware.

You also have to know when to let your child fly. 


And if your child is abducted by aliens walking from your car to the front of the school while a teacher watches, I will be the first one to sign up for helicopter lessons.

This was how I answered the prompt Life is too short for….





Finish the Sentence Friday

Sometimes

**Warning Rant Ahead**


Some times….I hate this life. I hate that as much as I love Abby I fear those teenage years. I hate that one day she will go through a period of her life where we will not understand one another.

But I accept that. 

I will not effing accept is that I HATE in capital and bold letters that doctors will never show concern for Bridget. That she has to have some mysterious swelling that one doctor tells me to call another doctor about who tells me to call yet another specialist about. That when I finally get her into the vascular clinic she is seen by one doctor and fourteen medical students/fellows and I am told that her vasomotor instability is not that big of a deal. “A LOT” of kids have something “like” this phenomenon and not to worry. When asked if I should be worried that it could be happening while she sleeps and is it fatal, I was told no. I told them they would be the first person I called should they be wrong.

No parent (and I am not looking for a poor Kerri thing here) should be told that. That without any testing, with a brief exam that their child is fine. Parents should not be made to feel like we are bothering doctors. 

We are the reason they can afford their student loans, vacation homes and alimony bills. 


Bridget has SIXTEEN different specialists. Why the freaking hell do I have to call them? They are all at the same flipping hospital. Can they not call one another and chat, is that too much to ask?

And why, dear God why, do they refer to one another and then disagree? Why must I always be the advocate, the voice of reason and the fingers of Google. Why do I have to always be vigilant? The one who e-mails and calls cardiology, genetics, rhuematology, neurology, GI, neuro-urology (yes, there is such a thing), pulmonology? Why do they think that because it is NOT life threatening it doesn’t impact her life?

Not that she “suffers”. There are children with disease, cancer and deformities that have a life so much more difficult. I completely get how lucky we are and how selfish I am for getting pissy that she has to endure things that really are not that bad in the scheme of things.  Recently she got another quirk, not an ailment or symptom really. But just one more thing to add to her Booness. I said she already had 15 why add one more. 

This was not the life I expected.

To constantly be second-guessing myself. And the Harvard Graduates.

To wonder if I push too hard or not enough.

To cry because children are supposed to be beings of joy before they are teenagers.

To be at my wits end because although I love Bridget for who she is I hate the fact that I don’t know why she is the way she is. That we need to know the why so we can give her the best life she deserves to live. Just like her sister.

To have to physically hold my child down for two hours while she screams during a test of her bladder function. 

Because as much as I love my child sometimes I resent that she isn’t perfect.  That she isn’t easy. That she, with all her advances, cannot keep up with where life has placed us.

Because I am not capable of being the perfect mom that can handle everything.

Because sometimes I cannot even handle my beautiful, awesome, perfect daughter.


And I am sorry. Because sometimes I effing resent it. I fucking hate that this is our life. A life where we know our beautiful daughter will always struggle. That our lives are scheduled around school, therapies, doctors appointments and not play dates, gymnastics and ballet. 

We will struggle with Boo. For freaking ever. This will not end. That although our children are always our children Bridget will forever be our child and not the mother of our grandchildren.

That I look into Boo’s eyes and see how beautiful she is yet think if only….


***End Rant***


Knowledge is just as important as inclusion

Boo is in an integrated preschool. A school where for every child that has a disability there is one typical child. The disabilities range from autism to ADHD to Down Syndrome to Cerebral Palsy to Boo. At a quick glance at the class you might not be able to tell which child is typical and which child is brilliant.

Which is the whole point of the program.

Okay maybe it isn’t the whole point. However the point could be made that by exposing our children to typical will allow them to grow social skills that come naturally to their peers. The peers learn empathy, patience and that not everyone is the same.

All good, right?

Except the other day when it wasn’t. 

My friend was walking into school with her child. Behind her another mother was walking in with their own. She heard from behind her, “who’s that”? 

The child replied, That is X. He doesn’t talk.

Instead of letting it go or saying something….ANYTHING positive the mother was heard shushing her and saying “that’s not nice”.

Here is the thing. What the girl said wasn’t wrong. It wasn’t mean. It wasn’t “not nice”. It was true. Kind of. X can talk. But he has autism so you have to be looking at him and engage him for him to talk back to you.

X’s mom left feeling like her son was weird. Like he is misunderstood. This one place in the universe (outside his home) was supposed to be the safe place for us. A place where our child is accepted for who they are.


I adore Boo’s program. I love each and every one of her teachers and therapists. But I worry they might be missing an important component. I understand privacy laws and all that crap. However the typical children should be made aware (in words they understand) why X doesn’t talk to them. Why Boo doesn’t play appropriately with them. Why oh why in words a young child understand all children are not the same.

That all children, typical and brilliant are all special in their own way.

I am sure they do teach it. But the other day the lesson was lost and a mom went home feeling her son was weird. I think there needs to be more done. More parent teaching. Yes, I know we cannot get parents to come to a PTA meeting who can we get them to an inclusion training? 

There is an answer somewhere. It starts with the letting the children teach the parents. It doesn’t stop at an integrated preschool but an integrated school environment. One where every day there is a brief moment of education of those with challenges.  Awareness helps but until you ask you do not know, so you guess. It’s perfectly normal. Being aware is knowing autism exists. Being knowledgeable is knowing what autism is. We need to let inclusion bring more than awareness but knowledge.

If we can not let a 5 year-old ask the question, how can the 18 year-old know? 

My Challenge: Stacey

You know when you graduate high school you know, just know, that you will never forget those who shared those torturous four years with? Then you grow up and move on. One of the wonders of Facebook is reconnecting with friends long forgotten. Lucky for me an old friend, Stacey and I found one another recently.   

I am so thankful she is willing to share her challenge today.

MY CHALLENGE: Choosing to truly love all that isn’t perfect

Remembering back to where it all started, trying to have the perfect life. I was on the fast track. Improving my career, I had just accepted another promotion. Things were going as PLANNED. I became pregnant and life was awesome. Then IT happened. I started having horrible pain and realized I had miscarried. Well that was just the beginning…the truth is I ruptured an organ and had 4 cups of blood in my abdomen. I had gone into shock and was practically dead. I picked myself up after hitting my head on the toilet and my husband called 911.
The purpose of this story will become apparent soon and it’s connection to autism.
On the road to recovery I decided nothing would stop me from having that perfect life. Despite the fact numerous doctors said I wasn’t able to have kids I tried again several times. And I failed several times. But WAIT a minute. I wasn’t failing at all. I never gave up HOPE. If it wasn’t for hope I wouldn’t have three amazingly complicated mischievous beings.
I got pregnant with my first child and it was rough. The doctor said try again soon if you two. Not 15 months went by and Matthew was born. I was so excited but during my pregnancy everyone asked if things were okay. I only gained 15lbs and didn’t enjoy food. Being my stubborn self I only paid attention to what I thought was important.
When Matthew was four months old I got my first sign something wasn’t perfect. My son’s left arm wasn’t functioning correctly. To my dismay, he needed physical therapy. Then he was diagnosed with autism. So we worked more and more to pay for therapy he really needed. I think we spent over $20k of our own money. But, I smiled through the exhaustion. I read books, studied online, pulled up maps of the brain (that’s the Psychology major in me).  I talked to my customers who were doctors, teachers, mothers, therapists, anyone who could offer advice. My HOPE was reaching new levels.
I refused to believe the prognosis that Matthew will never speak more than 20 years. I am not going to accept that and neither will God. For He made me super determined. I began researching vitamins, clay baths, speech therapy and anything that might help my son. We went gluten free, dairy free and I found solace with my spiritual life coach, Sister Ita.
To this day I say whatever your challenge, find your inner peace! Find your strength and pray. Find your child and don’t let them go. Don’t ever forget the journey, but focus on the end result, the future. Your child is so much more than our hearts can imagine. Hang in there through the hard times. Reach for the sky and don’t give up your hope.
Love,
Stacey

Mom of Matthew

Thank you, Stacey for sharing. I think all of us struggle loving what isn’t perfect in our lives. But a mother’s love always trumps all. In addition to being a warrior mom, Stacey is the owner of Vivian’s Day Spa in Florida. A place to rejuvenate and find an hour of peace.

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