Category Archives: autism

Autism cannot be cured

I believe in autism. I believe that so many families battle autism like warriors. I believe autism can be masked and I believe that autism can be hidden.

I do not think autism can be cured and question that it should be. Continue reading

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

TBT–CARE

Throw-back Thursday, today to not quite end Down Syndrome Awareness Month I am reposting a blog from October 31, 2013. It is beyond important to raise awareness for what Down Syndrome is and what it is not. This post explains why it is so important to any parent whose child has a special need.

Continue reading

I’m thankful for the GAP

Words I never thought I would utter. But truly, I am thankful for the GAP. Ellen at Love that Max  posted a picture on Facebook of the latest GAP add. Giving them a shout out for including a girl with cerebral palsy.

I had to blow up the add to the full-view to find her.

Continue reading

31 for 21

I have been blogging for about four years now. In my first year my friend Michelle at Big Blueberry Eyes began hosting the 31 for 21 challenge. Although Boo doesn’t have Down Syndrome she has a lot of friends that do.  I have participated for the past three years and will do so again this year. 

And this year I am starting on time, so bonus points!

October is Down Syndrome Awareness Month. Boo’s favorite friend at school, Jillian, has Down Syndrome. Just like Boo, Jillian learned sign-language first. Did you know that most therapies used in treatment for a person with autism or developmental delay were first created to be used for children with Down Syndrome?

Sadly more fiction is out there about Down Syndrome than facts. Last summer a man (for lack of a better word) told a woman that it is immoral to have a child with Down Syndrome. He is wrong, so wrong. I am not promoting pro-life or pro-choice, it is your decision. However I urge, no beg you that if you are pregnant and told your baby might have Down Syndrome to find out the facts, find the support and find information before making a choice you cannot take back.

Here is what Down Syndrome is not:

  • Down Syndrome is not contagious
  • Although all children with Down Syndrome experience some cognitive delay, having Down Syndrome does not mean the child cannot learn 
  • Down Syndrome is not a rare disorder. In fact 1 in about every 700 children are born with Down Syndrome 
  • People with Down Syndrome are not always happy. Just like all children they have their moments
Here is what Down Syndrome is:
  • People with Down Syndrome have jobs and participate in the Community
  • People with Down Syndrome have the capacity to love, to learn and to affect change
  • People with Down Syndrome life expectancy has grown to be that of most peers.
  • People with Down Syndrome have friends, know love and just like their peers have tempers
  • According to NDSS, there are more than 400,000 persons with Down Syndrome living in the US. Chances are if you do not know someone today you will tomorrow.
  • Down Syndrome does not discriminate on race, age or income level
Having Down Syndrome is a life sentence, but it can be a beautiful life. 

The purpose of the 31 for 21 challenge is to post every day in October. Each post does not have to be Down Syndrome related. I did focus on that today to kick off the month. Please visit Michelle’s post to learn more about participating.

I hope my fellow bloggers join Michelle’s Challenge. Because awareness promotes acceptance.


Just what we all want for our children. To be seen just like everyone else.



 
To learn more about Down Syndrome, please visit the National Down Syndrome Society.

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

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

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? 

It’s the end of summer

At the end of each summer, I always feel YES! THEY ARE GOING BACK TO SCHOOL! There is usually a happy dance that quickly follows. Sometimes there is singing. This summer for some very weird reason is different. 

This summer was freaking fantastic. 


Sure there were some hiccups.There was the scare that Boo would have to have a second spinal surgery. There were meltdowns when she was on break from her program. This year there were more joys.

We had company just about every weekend. Seriously the sheets in my guest bedroom have never been washed so often.

When we were not company we were in Vermont. Twice. Once for a family reunion and once for the best ever family vacation where we were a normal family for a brief time.


I had a visit from my best friends from Junior High School and from High School. They got to meet. It was epic. As in spending the night until 2am drinking wine and connecting. And forgetting we are all over 40 and had to get up with our children in the morning. Early the next morning. I knew they would get along. I do not know how I go so long in between visits from both of them. We all agreed we have to be better about reaching out to one another. That although we know we are there for one another, we have to remember to reach out and be needed. 


I did not embarrass myself in any of the obstacle races I ran. Although I did end up in the ER for stitches after a dish-washing mishap. 

Boo rocked her MRI. She rocked it so well that we learned her spinal cord is perfect and she will not need to have a repeat surgery.

I did the ALS Challenge my way, explaining why I felt it was so important that the Challenge be more than just dumping ice on your head. My friend explained to me that it was supposed to be both: donate AND dump. When we looked back over our friends “challenges” though we realized how often the AND was left out. So I stand by my Challenge. Donate and dump ice. Please. Now. 

Abby had not one but three sleep overs. We all survived. My trick? Only one child can come over. That has been vetted with play dates to make sure they are not monsters that will destroy my house.

Boo’s summer program was the entire month of July and some of August. A blessing for all of us. I am deeply grateful for the teachers and specialists who gave up their summers so my girl will continue to thrive.

As I look over this summer I believe it is the first summer since I became a mom that I was present. That I didn’t use work to escape but to pay the bills. I was in the moment. Whether working with Boo to understand she could not have one more muffin or discussing if we would get a bunny. In a moment of weakness (or motherhood bliss) I said maybe. But it’s better than saying maybe you can get a pony.  


At the end of each summer I usually rejoice.

This year I mourn the end of summer. I want to be back there, in Vermont with my family. I want to be back there around the fire pit with friends. I want to be there on the beach watching Boo dance. I want that moment that she was whole. I want to wake up with no agenda other than to bask in the sun.


At the end of each summer I always feel exhausted. This summer I feel fulfilled. It’s a good feeling and one I will remember to recapture.


Finish the Sentence Friday

How would you finish the sentence: At the end of each summer I always feel….

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