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Monday, March 17, 2014
New Home
All of my new posts regarding autism and the adventures of our little family can now be found at The Bangor Daily News. Make sure to follow us there!
Tuesday, February 4, 2014
Paying It Forward
As I was waiting for them to call me to go over all the legalities of the study I began reminiscing...
I remembered filling out all the paperwork for the Bright Eyes grant. Not really ever thinking Brian would be one of the fifty children picked from all over the country.
I remembered sitting on my bed, actually in the midst of going through Brian's paperwork, when I got the call that told me they wanted to award Brian one of the grants. It was one of those pivotal moments in my life that I can recall every little detail to it.
The trips down to Texas are remembered in the same details. I remember every little piece of it- the layovers, the hotel room, the practitioner's faces and voices, what we were wearing, etc.
Funny when most of the time I can't even remember what I did yesterday.
We will forever be honored by that grant. That grant gave us speech, less self-injurious behaviors, more interactions, happier affect overall, increased cognition, and sleep, GLORIOUS sleep. That grant helped bring my boy back to me. Is there still work to be done? There sure is. But I know we wouldn't be where we are today without the Thoughtful House.
I hope whatever little we can do can help another child the way mine was helped.
Thursday, January 23, 2014
Hold My Hand
I, on the other hand, have to get out of the car. Help open the car door and sometimes have to help do the buckle depending on how Brian's fine motor skills are operating that morning. Help him get his backpack on his back, pull him back sharply from trying to run in the parking lot without looking for cars. Then he always looks up at me and independently slips his little hand into mine.
Every morning I smile when I feel that little hand in my hand. It's such a big deal. There was a time that we had to do ABA trials to get him to hold someone's hand. Drive to a parking lot, get out of the car, hold Mom's hand- oh you get a skittle! Yes, I will admit we were a family that used food reinforcers when it came to learning safety rules (and potty training!). Take five steps, still holding Mom's hand? Oh, another skittle! Not holding Mom's hand and have bolted across the parking lot? Back to the car you go to start all over again. Whole afternoons working on this.
I also smile because when his little hand is in mine, he is safe.
I'm not walking my child into the school because I'm an overprotective mom. I have another son, just 18 months older than Brian, that is allowed to walk home from school with his peers. I'm walking my son into school because he can be a wanderer, like so many children on the spectrum.
He's impulsive. He hears that train that runs a block over from his school there is no doubt in my mind he would decide to go check it out. He has no idea of stranger danger. Someone asks him to go with them, he will. He still doesn't realize that moving cars won't always stop and can hurt him. He loves water and just recently was found in open water near a lake when ice fishing with his father. If he was ever to wander off and get lost he might be able to tell someone his first name, but that's it.
Avonte Oquendo disappeared from his school. The place his parents dropped him off every morning, assuming he was safe and taken care of. The place that had an IEP and plans set up for Avonte's eloping behavior. The place that was equipped with cameras and security guards. Avonte's remains were found recently in the water. That was not the ending any of us wanted for his family. I had held on to hope as I'm sure they did, and all the other parents out there following the story. Stories like Avonte's, stories I hear all too frequently, go right to my core. Because I know that could be my boy.
These are facts taken from the National Autism Association and I know I have shared them before, but I'm not sure they can be shared enough.
- Roughly half, or 48%, of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings
- In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement.
- More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number
- Two in three parents of elopers reported their missing children had a “close call” with a traffic injury
- 32% of parents reported a “close call” with a possible drowning
- Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers
If you haven't already please check out NAA's printable toolkit for wandering or order yourself a Big Red Safety Box. You can never be prepared enough!
Sunday, January 12, 2014
Flashback: 2007
The biggest perk of working in a preschool is having the same vacation time as my children. I count down the days until I will have tons of free time to play, explore, and learn with them.
Today is one of those much anticipated days and I can not wait to get back to work.
A dead giveaway that it's been a long day is the aroma of microwave cooking. A tired mom does not usually feel the drive to produce a gourmet meal. In our household microwave meals are rare, only because we have a shortage to choose from- we are living a gluten-free lifestyle like many families that include an autistic individual.
The gluten-free, nitrate-free, flavor-free turkey dogs are boiling on the stove and the gluten-free but pleasantly surprisingly yummy mac n' cheese is being heated by micro waves. They both still have a few minutes to go but my autistic 3 1/2 year old, Brian, has already been at the table for five, which is a lifetime for him, fully equipped with a plastic green fork gripped in his right hand. He doesn't fully understand the process of making a meal, even one by microwave. As far as he is concerned there should be no elapsed time between me washing my hands before starting a meal to when I place it on the table. His anticipation is magnified when he knows we are having turkey dogs, which is one of the 12 foods he'll actually eat.
Between Brian's animalistic yells, which are becoming louder and closer together, I call his quirky five year old brother to come set the table- a chore I have just recently regulated to him. Of course I have to call him a few times because he is fully immersed in his new handheld video game.
The incessant noises coming from the game, the hum of the microwave, and Brian's frequent yells are really doing a number inside my head. I've learned a lot about sensory issues with my kids- enough to know that I have some of my own! Then on top of it all I hear a "beep beep beep"- Brian's potty timer.
"Brian you need to use the potty," Corbin chirps without looking up from his game. Okay, he heard that? But didn't hear me calling his name?
Brian lets out a loud scream, jumps from his seat, and storms up the stairs to the bathroom. We are in the midst of an intensive potty training schedule, which Brian has a love/hate relationship with. He hates the transitioning part but loves the reward, a Skittle. I follow him up the stairs, catching myself grinding my teeth- my newest bad habit that I tend to do when I'm feeling stressed or overwhelmed.
Almost to the top of the stairs when our neighbors decide it's the perfect time to burn their dinner. We live in an apartment complex and one of the many perks is if one smoke detector goes off- everyone's follows suit. It doesn't bother Brian. Not much auditory does, except for the blender, parades, and occasionally the vacuum. But I know it's going to be another story for Corbin.
I hear the crash of his game from his fingers to the floor causing me to grimace with worry of how much it will cost to replace the gift from his Dad. Immediately following the crash comes a panic-stricken, scared scream. A scream that Jamie Lee Curtis would be envious of, accompanied with the pounding of little feet running up the stairs. By the time he reaches me the smoke alarms have stopped as abruptly as they started. I hug Corbin, explain the noise to him, and turn just in time to remove the green fork from Brian's hand before he is fully situated on the toilet. Brian pees, smiles, and points to the Skittles bag.
"Great job Brian," says his big brother.
Then the three of us walk downstairs. Brian first, holding his green fork, and Corbin and I, hand-in-hand following. The house is quiet. For now.
Friday, January 3, 2014
Still Writing.
I do still love to write and if someone gives me an idea or something rubs me the wrong way, you know I'm going right to Microsoft Word to write something for it's cathartic, therapeutic properties.
I have a couple pieces floating out there in the internet world.
First was a piece I wrote for Tania over at My Adventures in Mommyland. She is doing a series on single parents finding love and I wrote the first one for her. It's meant to inspire and I think anyone in the dating world could probably relate!
The other was a piece that was just released this morning for a local paper, The Bangor Daily News. There has been a lot of upheaval and dissatisfaction within my school district this year (what's new?). It's also been the first year that I 100% stand behind the autism program they have developed. It started to come to my attention that no one really knows what goes into those programs unless you work directly with it or are a parent. I have a feeling that the majority of parents of typical children in my son's school don't even know there is an autism program. I wanted to write this piece to give a voice and make people realize how important it is to correctly fund these programs. Honestly, I'm a tad anxious with the budget concerns that my son's program will be on the chopping block as it has been in the past.
So, even though I'm not writing here as much, I'm hoping you'll continue to read my new pieces and support them as you always have!
Thursday, December 26, 2013
Growth & Hope
But in general this whole autism thing is going good. We've got it down these days and this boy always amazes me.
Christmas isn't always the happiest of days for families on the spectrum. Routine is thrown off. Senses are overloaded with smells, noises, and lights. Lots of people are around wanting to talk to you and hug you.
We've definitely had holidays in the past that were less than happy. Full of tears and confusion. But those are like distant memories now.
It's been a couple of years since Brian has had a really hard time with Christmas and each one always tops the previous one.
We only had tears one time yesterday and it was when we didn't let him immediately set up the new electric train track he got. He was upset but he just whimpered lightly and soon came out of it while he opened the rest of his presents.
I saw a post yesterday from one of my new friends, the mom was exasperated by how off and upset her young boy with autism was from the day's festivities. And it really made me reflect on Brian's growth but also made me feel like I could offer her hope, which is the best gift I could give anyone on Christmas.
Saturday, September 28, 2013
These Moments.
We were standing at the bathroom sinks brushing our teeth when Brian started stomping his feet in a rhythmic manner.
I watched him and when he stopped he smiled at me. It was a smile of invitation to play.
So I stomped my feet back in the same pattern.
The reciprocal stomping went on for several more rounds when he decided to add in a spin.
I continued to repeat after him, both of us grinning from ear to ear.
The next spin was accompanied by him speaking the words, "Turn Around".
It's moments like these, that sneak into the mundane routine of the day, that you miss if you're not living in the moment.
It's moments like these that will keep me smiling for at least a week. The memory of this moment will push me through the tantrums, the SIBs, the cleaning of the bathroom. ..
These are the moments I live for.
Saturday, September 14, 2013
The Elephant Series
Monday, September 9, 2013
My Mom Got Married.
Tuesday, August 20, 2013
I Got Your Back, Max.
To Max's family,
I can't imagine what it felt like to hold that letter in your hands and read those words about your child. My heart broke for you and I cried tears for you. I cried tears for my son. I cried tears for humanity.
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| Please share this image created by the National Autism Association |
I have never met Max but I can tell you that he is a beautiful boy. He has a kind soul that has probably never known hate for a single person. He finds joy in the simplest of things and really appreciates those things and people that he loves. I watched him giving high fives to the members of your community and his happiness exuded so much that I laughed on the other side of this screen. My boy does the same exact jump and flap when he's excited. Max's worth shouldn't be questioned ever. His ability to love and accept and not hate makes his place in this world so much more important than the perpetrator of this hate crime (because that's what this is).
You are doing an amazing job as a family, it is clear in the joy that Max was radiating. Stay strong and remember that you have an entire amazing supportive autism community that has your back.
Love,
Heather, fellow autism mother
Sunday, August 18, 2013
Back To School Prep
Every year we plan visits prior to school starting for Brian to see his new classroom, meet his new teacher, and peruse the halls without any other children there.
I meet privately with the new special ed teacher (yes, new, as the role seems to be as cursed as the Professor of Defense Against the Dark Arts in the Harry Potter books) and explain all the Ins and Outs of Brian.
And every August I update the document I made years ago, "Unlocking the Puzzle of Brian".
I have a number of personal "friends" going into Kindergarten this year with the autism diagnosis and a lot of questions from their parents about what they need to do. Some would say my document is a bit lengthy or a bit bossy....however, over the years I have learned that I can't merely trust that the professionals in my child's life will understand the intricacies of autism. I need to put it all out there, no matter how obvious I think it may be.
So far I haven't seemed to get any attitude about it (unless it's behind my back) and I've had outside evaluators comment in their evaluations that they had an excellent, thorough document given to them (mine). I copy this every year and give it to EVERYONE on Brian's team- another thing I've learned through the years- you can't trust that they will all share information with each other. So one goes to the ed tech, the special ed teacher, the regular ed teacher, the OT, the speech therapist, etc.
I'm including the link today for the document I made last year. It's not updated for this school year yet as I'm a procrastinator and will probably be working on it the night before the first day of school. As I'm reading it I'm happily realizing he has made a lot of progress this past year, another bonus of having a yearly document.
https://docs.google.com/file/d/0B-io0njsv9jJZFhTb09nVVp6ZU0/edit?usp=sharing
I'm hoping this link will help some of those just starting this journey of autism and public education. If you've already been there and done that, what works for you and your family?
Tuesday, August 13, 2013
A Mother's Intuition
Or the tale of a Mom whose child just screamed for days after a vaccination and she called the clinic asking what was wrong to be told that it was just a normal reaction. Then for her child to regress. That's also my tale.
Where did this train of though come from? With kids on the spectrum, no matter how long we've been in this game, no matter how far our kids come, we still come to crossroads where we have to choose our gut over what professionals say.Sometimes we start to feel a bit lost, still in that effin' mindset that they are doctors or teachers or what-have-you, and we must listen to them because they had more formal education in this particular area. I call bullshit. No one knows their children like mothers do. And when our kids are nonverbal we have to listen to their behaviors, to their nonverbal communication, and to our guts.
I was stuck for a little bit this summer on how to move forward. Then I stopped listening to everyone and started listening to my son again and I knew what to do. And he's happy and thriving and reading and talking and laughing. And that's what matters.
Monday, August 5, 2013
It Embarrasses Me.
Brian was flapping and laughing as he usually does in the checkout lane, when Corbin hissed to him, "Stop doing that, Brian".
I gave Corbin a look and told him that Brian wasn't doing anything wrong.
Corbin hung his head, looking ashamed, but whispering under his breath, "It embarrasses me when people look at him and think he's a weirdo."
Corbin is an amazing big brother, we all know that. He has stepped up to the plate many times over the years. He has educated his peers, he has stood up for his brother, he has bent to his will many times over.But he's a child. A child going into middle school. A child who is suddenly becoming aware of societal norms and wanting to "fit in". A child who already has his own social anxieties and difficulties.
I didn't educate him in the moment but we talked later at home. He went on and told me that he really wants friends in middle school and he is worried that in middle school kids are meaner and won't like him if he has a brother who is "weird" in their eyes. I asked him where he got such notions and he replied, "I watch TV, Mom and middle school kids are bullies" (thanks TV!).
We talked about not wanting friends who would be mean to other kids who are different. We talked about the fact that most of the kids in middle school are the same ones he has grown up with and they already know and love Brian and are already his friends. We talked about how Brian can't help his stimming and he's doing his best to fit in as well and he needs our support and love.
That moment of him being embarrassed of his brother hurt my heart a little. However, I know this stage Corbin is entering is a hard one and we need to support him as well. I try to remember myself at that age. I remember how desperately I wanted to fit in and for the most part I assume I was fairly typical. Corbin already has many social and communication deficits that meet an Aspergers diagnosis as well as having a brother who is very different from his peers. It has to be hard for a ten-year-old to take in.
I want Corbin to grow up to be a person who is compassionate, empathetic, and secure enough in his own skin to realize he doesn't need or want other people's judgments. I want Corbin to grow up knowing that his needs are just as important as his brother's. I want him to be heard. I want him to get through this upcoming tween and teen stage with as little hurt as possible and come out of it with a strong voice and sense of self.
Tricky waters ahead.
Wednesday, July 24, 2013
Summer School
The first week when I reminded Brian he was going to be starting summer school he smiled and laughed. He got ready to go INDEPENDENTLY and stood in front of the door BEFORE I was even ready to go. Usage of capital letters in that last sentence are needed. This child hates transitioning with a passion.
I drove him to school and he skipped and giggled all the way in. The remainder of the three-day week continued on like that.
The following week we got a note that Brian had swore when he was frustrated. I have to admit, at first I laughed. It was kind of funny that my child who uses so little language had decided to use a swear in a meaningful context. I let it slide.
The next day I got a note that he swore, bit his wrists, and cried a lot.
Every day since the notes have been the same.
He doesn't want to go to school anymore. Last Thursday when I told him it was time to go to school he started running around the house, throwing himself into the walls and the floors while screaming.
At first I blamed the school. What are they doing to make him so upset?
Then after witnessing a huge meltdown on a Friday, a day of no school, I began to wonder what is making him not feel well?
Then I came full circle when I watched his Saturday, Sunday, and Monday be incredibly good. Watched him go to gigs, appointments, have a house full of people, sit with me and work on academic skills without a single meltdown. And then watched him go back to school on Tuesday to get a note that says, "Swore a lot. Pounding his fists on the floor. Seemed very sad, cried a lot."
I don't ever want to be that parent that blames everyone but my own child for behaviors. However, it is so odd that he is swearing (and by the way, it's the "F" word) every day at school but no one else in his life has ever heard him say it (besides last fall when he was singing "fu-kay, fu-kay, fu-kay"). It is so odd that I can make him sit and work on sight words over and over again without more than whining.
It's hard when your child can't tell you for sure what is going on. What could make it easier.
Summer school seems sort of like a joke at this point. I'm sending him and he is obviously going into his fight or flight response every day so what real learning can be done? What real learning can be done when it's a new teacher that just met him and probably won't really start to understand how he works until the six weeks are over anyways, no matter how wonderful and true her intentions are? What real learning can happen when he's not getting 1:1 attention that is written in his IEP or his mandatory sensory breaks?
We're finishing up the week and then reassessing...
Monday, July 22, 2013
Moments of Normalcy
"Hey, what you doing?"
"I'm eating some chips."
"Oh, okay."
"Do you want some?"
"Yes!"
I live for these little moments.
Tuesday, June 25, 2013
Functional Langauge
We still get a whole lot of "yes"s for things we know he doesn't really want to answer in the affirmative. For example, "Do you want brussel sprouts for dinner?".
However, he has hundreds and hundreds of words up there.
If he's in the right mood he can label everything, EVERYTHING, you ask of him.
He can differentiate a macaw from other birds and a tree frog from all the other varieties.
He can come in after making a mud pit in our driveway, catch a glimpse of his dirty reflection, and exclaim "This is not any good".
Wednesday, June 12, 2013
Just A Taste of Why He's Amazing
In the meantime, he keeps blossoming into this amazing person.
Two nights ago he broke down into tears. Because he couldn't eat the rice on his plate. Yes, he has a harder time at mealtime than his brother. Yet, it wasn't something that needed tears. The tears grow into other emotional problems and then he starts breathing so hard that I'm worried he'll have an anxiety attack.
The problem was that we were having ice cream for dessert. And it's not a rule we budge on. If you don't eat your dinner, you don't get dessert. But we don't have dessert very often so when it's available it's a big deal.
He did end up going to bed with no dessert and we were able to dry up those tears and get some hugs and laughs before bed after an hour or so of the tears.
Last night, Brian was the one struggling with dinner. We had potato salad and he is not a fan. Corbin finished his up in no time. Brian was screaming at me because he knew there was ice cream and he didn't want to eat the potato salad.
Part of me expected Corbin to be a bit smug. Just the night before Brian had had ice cream and he had had none. Quite honestly I thought that may be a typical response.
However, Corbin stopped playing his game and came and sat next to his brother who was still sitting at the table trying to coerce me to give in. Corbin patted his back and started talking to him in a nice slow voice telling him he could do it. He then leaned in and picked up one piece of potato and said, "Here, I'll help you, but that's all I'm eating because I know you can do it".
Brian ended up eating all of his dinner and both boys enjoyed ice cream together.
So yes, we may have learned last week that Corbin has a bit more struggles than I thought. Or maybe it was just it seems more now that it has labels...but regardless, he is an amazing person growing up with all of the attributes I find to be important in people. He is simply wonderful.
Wednesday, June 5, 2013
To Be Anonymous Or Not
Early on I asked myself whether I should blog anonymously or not. At the time I didn't feel like I had anything to hide.
Quite honestly I never thought I'd get to the point where I had to worry about Brian's peers finding my blog and teasing him about it. Yes, there are always going to be those ignorant little brats that will make fun of him for no reason. But as the whole his differences are huge enough that kids are tolerable.
Does that make sense?
In a way I think kids that have just little quirks, that can talk but can't figure out social communication, that can keep up cognitively (maybe even better than typical peers) have it harder as far as bullying situations go.
As Corbin gets older we continue to see his little quirks magnified. At the same time I just keep seeing how much more amazing he is. He keeps getting new diagnoses thrown at us and I want to blog about it so DAMN bad. I want to blog about raising two kids with very different needs in one household. I want to blog about how Corbin breaks the mold. I want to blog about how, that even though they both have these diagnoses, how different I worry about their futures (and how I feel like I can spread some light on this whole Acceptance battle in the ASD world).
But he's one of those kids. One of those kids that may actually read this blog in the future. One of those kids whose peers will read it and not read it to understand but read it to pick on him. And he's one of those kids that will care what his peers think of him, unlike my other son.
And I'm stuck.
Wishing that five years ago I started this anonymously.
Thursday, May 30, 2013
Behind Bathroom Doors
"I hope you weren't a fan of your orange nail polish."
Tuesday, May 28, 2013
Turn Around
I hate to admit this but first I blew it off like it was one of his scripts. He's talking a lot these days! However, it's 90% in scripts, just repeating movie lines over and over and over again. He has a lot of flying scripts from Buzz Lightyear and Fly Me to the Moon.
However, he looked right into my eyes and repeated it.
I asked him if he wanted to fly and he responded, "Yuh!".
I picked him up quickly right over my head and put him back down on the ground.
He looked puzzled and I could tell that wasn't exactly what he wanted.
He looked at me, scrunched up his face as he thought and then said, "Turn Around".
Turn Around?!?!? One, a phrase I've never heard him say. Two, he was able to say it very clearly even around those obstacles of autism and apraxia. Three, he TOLD me what he WANTED. Something novel, something fun that he just thought of, something we haven't practiced for months and months for him to learn.
I could only spin him around a few times before he became too heavy. But he seemed content.
And I was more than content as I walked around with a grin for hours after as I kept replaying those two little words over and over again in my head.



























