Thursday, December 26, 2013
But in general this whole autism thing is going good. We've got it down these days and this boy always amazes me.
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
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
Monday, September 9, 2013
Tuesday, August 20, 2013
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.
|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.
Heather, fellow autism mother
Sunday, August 18, 2013
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.
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
My oldest son was born with heart defects. We didn't know about it during the pregnancy so you can imagine the shock when during delivery his heart rate dropped and the happy hospital room suddenly became an emergency nightmare.
He had to be forcibly removed from the birth canal. The nurses strategically blocked me from seeing my son who was quickly whisked from my room . I remember not hearing him cry. The worry in my mother's eyes gave it all away. She later told me he was blue and lifeless. I later learned he was given an Apgar score of a one, his barely there heartbeat got him that one measly point.
Five days later we were released with a quiet, sleepy, but content little boy. We were told he had heart defects but they weren't pressing in the world of heart defects. He would thrive, we were to check in in two weeks, he may need surgery but in all likeliness the hole would heal on it's own.
Four days later I knew something was wrong. He couldn't get through a feeding without passing out in exhaustion. When he was awake he was cranky and inconsolable. I googled signs of heart distress because the doctor was so sure in Corbin's good prognosis he hadn't given me signs to watch for. I was 20 years old. I argued with myself. I told myself that babies were meant to be cranky at times and I had just been lucky up to this day that he was so easy to care for. I called our family doctor and the nurse laughed politely as she gently welcomed me to motherhood.
An hour after calling I looked at him sleeping and knew his breathing was off. I put him in his car seat and sped to the medical center. I stormed in, demanding them to see my son. An eye roll and 15 minutes later and he was on the table.
The doctor who had known me since I was 10 smiled and laughed as he undressed my son, placating me with a quick evaluation. His demeanor quickly changed when literally two minutes later my son turned blue.
At nine days old my son was in congestive heart failure.
I still shudder to this day when I think what would have happened if I hadn't listened to my gut. If I had still been sitting at home letting him sleep the day away when he turned blue.
You hear a lot about mother's intuition if you spend any time with moms of children on the spectrum. I don't know how many times I've heard the tale of a mother telling the pediatrician that something was wrong. And the pediatrician looking back at them and telling them that all children develop differently and to stop worrying. That's also my tale.
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
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
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
Tuesday, June 25, 2013
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
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
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
"I hope you weren't a fan of your orange nail polish."
Tuesday, May 28, 2013
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.
Monday, May 20, 2013
"Who would take their eyes off of their child if their child had autism?"
"Where was the mother when this happened?"
Last week the world lost a beautiful soul, Mikaela Lynch. A nine-year-old who left her yard to go find some water.
Yesterday we lost an 8 year-old nonverbal child with autism in Florida.
And following each of these reports is the finger-pointing.
Just what parents need with tragedy like this.
I consider myself a good Mom. I actually think I'm pretty great at what I do. I know my son is a wanderer and has no concept of danger. I've had window guards installed in windows at my home, I've put stop signs at the doors, I have bought temporary tattoos that have my contact info on them to put on him when we go to busy events. I have worked relentlessly to teach him to swim since like many others on the spectrum he is a magnet to water. I have drilled hours and hours of road safety- looking both ways, holding hands, not going past specific points in yards, etc., etc.
But my child has escaped.
A couple times.
Once at a campground I lost him. Thank god, I found him. He had decided to go to the bathroom and because he doesn't always have the necessary tools to communicate that to me he just left when my back was turned.
Once in a parking lot near a beach he took off to run to the water. He was actually hit by a car backing out. It was just a tap, not even enough to knock him over. Thank the universe! But it was enough to make me keep a death grip on him for the rest of the day. My heart was beating through my shirt for the next 24 hours.
Every once in a while, while we are all running around trying to get ready for school and work I'll notice that the front door is open. And there is Brian standing in the middle of the road flapping his hands staring up at the airplanes in the sky.
I know how lucky I am that my child has been safe and sound each time.
Life with a child on the spectrum is 24/7. It doesn't stop. We can do ABA over and over and over again to teach them safety but it doesn't guarantee anything. Life is still going on around us all the time. We can't be every where at once. We have other children, other requirements expected of us. Brian is my priority by all means, but I'm not Wonder Woman.
So when a tragedy hits a family like Owen or Mikaela we need to send out love and support. Enough with the judgment and finger-pointing. Glass houses people. Glass houses.
For more information on the dangers of wandering and autism visit: http://nationalautismassociation.org/resources/autism-safety-facts/
To get yourself a FREE safety kit for your child on the spectrum (pay it forward if you can) visit: http://nationalautismassociation.org/big-red-safety-box/
And lastly contact your local police department and see if they have a program in place for identifying children on the spectrum. Some will keep reports with pictures on our children with where they may go if they wandered, what their behaviors are, etc.
Saturday, May 11, 2013
|Covering his ears for the birthday song back on his 8th birthday.|
|Sleeping and holding hands with his brother. This is a very common occurrence.|
|Lounging around with Colin.|
|Absolutely no fear at Grammie's pool. This is the year he really learned how to swim.|
|We moved int our new home and many laughs have occurred in the big tub.|
|Looking like he wants to soar away at Acadia National Park.|
|Quite possibly my all-time favorite pic of Brian.|
|Who could forget this first day of school picture. Brian is leaning in to give his big brother a kiss.|
|Brian overcame his fear of feeding the animals at York Zoo.|
|Making a scarecrow with Corbin.|
|Brian really got into the whole Santa thing this year.|
|Brian survived the biggest blizzard from his lifetime- Nemo!|
|Not feeling too sad about all the snow.|
|He really got into Spirit Week this year. Whatever Corbin did, he had to do too!|
|Brian spent as much time as he could loving on his youngest cousin, Lindelle. He just loves babies!|
|Brian participated in his seventh local Walk for Autism event!|
|A picture from his NINTH birthday with his Mama.|
Wednesday, May 8, 2013
It wasn't a bad one, especially compared to the drama we have been through the past few years. We have a really good IEP in place now, so as long as they keep sticking to it I feel secure in Brian's placement.
So why did I break out in tears when the interim special education director asked me the question, "What are your hopes and dreams for Brian next year?"
I'm not sure I've ever cried in an IEP meeting. Even when I sat there for three hours with a lawyer arguing with their lawyer. Even when a speech therapist tried to blame my son's summer regression on me. Even when I was told my son was borderline MR. I didn't cry at those meetings. I bawled my eyes out after in private.
Today he asked me that question and I tried to form an answer. A lump formed in my throat. My eyes watered up. I couldn't get the words out. I apologized for crying.
It's because the 7:30 AM IEP meeting followed our birthday breakfast for my little boy. He turned nine today.
It was such a sweet little birthday celebration. Bacon, eggs, orange juice, strawberries, GFCFSF banana-nut-chocolate muffins- all of his favorite foods. He tried to sneak a peek into his birthday present just like a typical child. We sang "Happy Birthday" to him and he just sat in my lap and smiled. He didn't cover his ears when we sang to him! He blew out his candles and opened up the one gift, as is tradition in our family. He looked around for more and I reassured there would be a ton more at his birthday party. He sat at the table and ate breakfast with us. He repeated, "Birthday!". He can answer how old he is when I show him nine fingers. He knows we're going to have a jungle-themed party on Saturday and can't stop saying, "The animals are in trouble!". Diego beat out Thomas this year, can you believe it?
Birthdays are bittersweet for me. They are a day of celebration because I am so lucky to have this ray of light in my life. I love that little boy with every ounce of my being. A smile from him just makes everything okay. There is nothing better than having him lie in my arms and smile at me and tap my cheeks and say "Mom". He is the best cuddler in the world. I just can't put into words what that little boy means to me.
But his birthday also reminds me of how far behind his peers he is. It reminds me that there are nine more years until he is a legal adult and I'll most likely be going through the process to became his guardian for the rest of his life.
When someone asks me on his birthday what my hopes and dreams are for his future I think back to his initial diagnosis and just KNOWING that I would get him talking. I would make it so he could answer questions and tell me what he needs. I would make him feel better in his body so he wouldn't want to hurt himself anymore. I would make it so his life wouldn't be so difficult for him. I would make it so he wouldn't need to tap people to feel safe or have all the doors closed before he can breathe. And that just hasn't happened. He's made progress for sure, but he is not where I hoped he would be.
People say that autism is a blessing. My child wouldn't have chosen autism for himself if he had had the choice. Brian is a blessing. He is the most incredible blessing I could have ever hoped for. Autism is not.
So my final answer to the question after choking down the lump in my throat? "I want him to continue to progress, I don't want you guys to give up on him. I know there is so much potential in there and I need to know his team sees that too."
It's the same answer I had almost seven years ago after that first evaluation.
Moral of the story, never schedule an IEP on my children's birthdays again.
Sunday, May 5, 2013
I hope I don't paint it like that's how it always is. Life with autism is hard, no doubt.
But we're happy. We have a roof over our heads, we have our basic needs met, we have laughter, we have love, we have each other. Our days are filled with a crazy amount of cuddling, giggling, running around the house like crazy people. I like to think that we may be one of the happiest, silliest families you ever meet.
Nothing paints how happy my family is then these pictures from the Special Olympics track meet this past Friday. There is nothing like a day with no judgments, acceptance of all, and compassion like no other to make us all feel at peace. To make us all feel like we can kick off our shoes and just breathe.
The Special Olympics athlete oath is "Let me win, but if I cannot win, let me be brave in the attempt". I love it. Not only does it sum up the event, but it sums up our jouney with autism as well.
Try not to smile along with my little man...
|Brian is the only athlete from his school, so his brother volunteered to help with the banner for the parade.|
|Brian really really loves Special Olympics day!|
|Brian's biggest fan|
|Getting his second place ribbon for the 100M dash!|
|I am a very proud Mama!|
|Ending the 50M with a smile, despite taking a fall at the beginning of the race.|
|Ready for his 4th place ribbon for the 50M dash.|