I'm a new Autism parent....again

Something I have always been aware of as a parent is that all children are different and comparing them developmentally is a ticket into worry-wart-land....Then Autism knocked on our door and that sentiment became a mantra. An anthem against unnecessary heartache and an exercise in acceptance, practicing the art of celebrating every single tiny step forward. It slows you down and forces you to smell the roses, to appreciate even the briefest of moments of your child's hauntingly beautiful unique eyes meeting yours. Savoring every word, every spark of communication, be that verbal or non-verbal. We're not picky. We're starved for those moments of precious interaction, no mater how fleeting.

So it's also really hard to not developmentally compare Autism to Autism. When you have a six year old Autistic child that has been receiving treatment since he was one, and you look over at his one year old brother and see an echo of the past, comparing turns into a compulsion. I thought I had gotten past the agonizing question marks. I though as a seasoned Autism parent, it would be easier if I had to go down that path again.

A path I was prepared to travel as a condition of having another child.

Well it's not easier.

I doubt myself all the time. Again repeating scenes I've already lived. "Maybe his hearing is impaired..." "Maybe he is just picking up on what his big brother does..." "Maybe I'm so wrapped up in Autism, I'm projecting the things I'm seeing..." "Maybe it's all in my head..."

No. When you see your baby doing things his brother used to do when he was the same age, but no longer does, it stops being a repeat and starts being another journey. Down that foggy uncertain path that you are familiar with but can never truly be adept at walking because its always changing. And the fog is so thick it makes it hard to see more than a step or two ahead of you. No matter how long you walk it, it always feels like you're a little lost.

So with 5 years of Autism parenting under my belt I have to stop, take a breath and realize...I'm a NEW Autism parent...again. I'm going in with skills and experience that will certainly help but that doesn't change the fact that this is Finnigin's journey, not Emerson's. The comparing developmental milestones thing is a habit I have to break and may be harder than anything I've ever tried to give up in my life.

 But fresh eyes is what he needs. The me I was when I was terrified for is brother, was a more diligent Autism mom, than the one I am today. Don't get me wrong I work so hard with Finnigin just as I did with Emerson, and still do, but there was a desperation that first go around, fueled by love but also fear. Is he missing out? Is he getting less of me, like having me as his Autism parent isn't new but a handme down version of what he should get?

....*sigh*

I could let questions like this eat me up for an eternity... Or I can decide to draw a line of distinction between my two sons. They have different strengths and different weaknesses. And my parenting of them will be different, just as it is for their big sister. It already is so different with Finnigin, but I will go ahead and admit to y'all the unexpected benefit of going through this again: Baby Autism really is a joy! I never EVER would have believed I would miss that crazy baby Autism babble. It just makes me remember how joyous it sounds...Or when I find cars lined in a rainbow row...or when I see him study something for ages and finally figure it out...or the unhindered innocence of the non-verbal child.

All of those things are cherished memories. I just had to have them repeated to realize it.

Repetition serves them well. Turns out it's beneficial for me too.

Bowling can be Brutal

I cried the whole way home.

Was there a major meltdown? No.

Did anyone get hurt? No.

Did anyone get lost? No.

Was it a failure? No.

A friend bravely invited us to go bowling with him and his two girls. I knew the kids would have a lot of fun. Emerson had just visited the same bowling alley weeks before on a Special Olympics trip so I knew he would be super excited to go back. Plus I had been well aware for weeks now that we needed to hop out of our safe fish bowl that is our home and get out more.

The last 9 months have been hard. Really hard. Separation, divorce, and the realization that Emerson is not the only child in the family on the spectrum. Finnigin joins him with increasing uncanniness. With him it seemed to be more mild than his big brother but as time passes I keep seeing, it's not so much less severe. It is just a different brand. Different sensory issues. Different struggles, different strengths, but just as much hard work to help him blossom.

We piled in the car and were on our way. As we pulled into the parking lot, Emerson's face lit up with recognition. We went in, selected the correct sized shoes and made our way to lane 3 where our friends were waiting. The lanes with bumpers were full so it would be a lot of gutter balls. I was okay with that. My expectations were low and not at all ambitious. As long as they had a reasonably good time and we gave it a shot, I'd be happy, I told myself.

Okay any Autism parent knows when you go somewhere new or busy,(or pretty much leave the house) you turn your eagle eyes on and watch for the first sign of bolting or general trouble. You perk your ears up to sounds and get more aware of your environment so you can anticipate potential problem stimuli or sticky situations.

You are on high alert.

Scrambling from one kid to the next. "Be careful. Bowling balls are heavy...Don't get your fingers pinched...Finny the ball goes in the lane...Thats for bowling balls not your head... Let me help you... Don't touch the floor it's yucky...I know that ball is pretty but it belongs to someone else... Stay with the group... It's your turn... Where did Emmy go? *Panic* Come back and STAY with the group!"

"Mommy! I got 9 pins!!" Eight year old Meadow shouts.

I feel a wave a guilt that my attention is so spread thin that I don't have much left to give her a fair share. At the same time I feel myself break out in a sweat from the exertion of wrangling two very determined boys.

"WAY TO GO MEADOW!!" I shout as I throw 30lb Finnigin over my shoulder so he can't run away again.

I know that she is having a blast helping the younger girls and her brothers but I still wish it was easier on her I think for a second, until my attention is pulled straight back to the boys.

Sometimes life reminds us that we aren't as good as we think we are.

Emerson was diagnosed right after he turned 2 years old, almost 5 years ago. I've learned a lot in those five years. His brother Finnigin is just about the same age as Emmy was and we have known for a year that a diagnosis for him as well is coming. He is already up to 3 separate therapies a week.

It wasn't until bowling that it hit me, like a ton of bricks. 

I have to start over.

And not just start over, but start again. And it's still a question mark. For both of them.

In my face that I have Emerson who is doing so good but really is still very hands on, and Finnigin who is his own little enigma that needs my full attention to figure out. The walk down memory lane with one while trying to help the other stay on track. Its all about staying on track, keeping them contained, not falling behind, taking the road less traveled by most parents and trying to not stumble as we aim for a similar destination that we may never reach. Celebrating every step forward.

Realizing I'm doing it solo from now on.

So I cried.

And that's okay.

Picking up the pieces

 

Okay when you live with Autism, you rapidly accept that life for you and your family will always look different than Joe Schmos down the street. So when dealing with divorce why does everyone seem shocked that that rule still applies? At least for us, Autism makes divorce look a little different.

We started dating in 1998 and married in 2003. Child one was born in 2005, child two in 2007 and child three in 2011. Autism for us became its own planet in 2009. ....To be 100% honest, Autism in NO way contributed to our relationship failure (human failings did). If anything Autism is the only thread that still binds us. If it wasn't for that I would seriously be hard pressed not to just tell him to fuck off, but parenting Autism changes that. 

I think Autism gets blamed WAY to much. Lets be honest and not use any excuses as scapegoats. Autism might put pressure on a couples communication skills or appreciation dynamics, but it's not the cause of the weaknesses. The relationship is. Personal dynamics are. Don't blame Autism. 

Is it fair to expect 2 Autistic boys to shuffle from house to house, week after week just because we can't keep it together? ...no that sounds incredibly selfish (thankfully its something we are miraculously united on) Instead, just like every other obstacle put in our kids path, we have taken what hits we can so they don't have to. 

For example still going places together like school or an outing because THEY need both our support. Or taking turns being with them IN THEIR HOUSE, rather then making them move around.

Contemplating having two houses on the same property or him buying a house down the street so the kids get the most of both their parents as they can.

Would it be better for me if he wasn't around? Emotionally, YES! Every other way? No. Parenting Autism is hard and now it's parenting Autism x 2. No one understands that like him. He's an expert on them and so am I.

 I've come to the conclusion that compartmentalizing will have to be a big part of my life because I will still have to deal with this person who broke my heart for pretty much ever, because I'll never find someone MORE dedicated to the kids or supporting of their Autism. And the logical part of my brain sees that because of Autism and the kind of parents we are, we can't do this divorce thing the way everyone else does. We still have to be a team. We have to work harder than ever to keep our personal issues out of our co-parenting issues because the kids deserve our best. They didn't create our issues. They shouldn't have to suffer because of them.

No, I don't claim to have it all together... Far from it actually. And I know that there will be so many more issues that will pop up for us because we are having to do this so slowly. Like a delicate surgery, cutting our lives apart without cutting into our babies or leaving them with tatered bits of ourselves, because they deserve so much more than absent, broken parents.

If anything Autism will keep some part of us together. Almost like the comradery veterans share, even if they have nothing else AT ALL in common. They both understand the sacrifices and dedication that duty calls them to, and are forever linked because of it. They've been in those trenches together, cut off from the world, worried about what would get thrown at them next. 

So maybe love IS a battle field, and Autism is what we fight for.

Kent, not cured

Said in the voice of Jack Black:

"They went blind from overexposure to pure awesomeness! 

-------------My eyes!!

------He's too awesome!!!!"

~Kung Fu Panda

Research after research has shed light on the fact that the Autistic brain is different, but in so many cases it is far superior. Sometimes so superior that it makes it hard to function. They have figured out that Autistics process motion so much faster than the rest of us. Children with Autism see simple movement twice as quickly as other children.(Science Daily) We've all heard the term Autistic Savant for a reason. The Autistic brain has astonished us over and over again.

Oftentimes though, these super abilities become debilitating. Many Autistics who successfully function in society,  have had a combination of learning how to manage their over-abilities, and having the resources and support around them to figure it out. For others it's just not possible. I feel like the difference between low functioning and high function autism is this very thing. If you are SO incredibly sensitive to every touch, smell, or sound, that it is all you can do to just process being in a quiet room, your brain will never be unoccupied enough to learn new things. I dislike the notion that low functioning Autism means low intelligence. This has been proven over and over again to not be true.

Autism is like a power. Whether you think its good or bad, it is definitely powerful. It is the strength of that power that dictates the severity of said Autism. Imagine Superman. If you turned up his super hearing, and you turned up his super vision and you turned up his feeling, he too would be in a corner rocking, but the more you turn them down, the more he could process, function....even if it was more than he was built to handle. Now if you tried to take his powers away, would he be superman anymore? No,you say! He would be Clark Kent!

I say no. 

He would not. 

Clark Kent was just superman in disguise. He still had his powers, he had just figured out how to "pass" as one of us. Take those powers away and he would not be the same being he was. Our kids are superheroes. I think we need to be content to help them learn how to be as functional as Clark Kent, but still remember that they are forever Supermen, just some with their senses and powers ON more than others.

http://www.sciencedaily.com/releases/2013/05/130508131829.htm

Guest post: The Worst Five Minutes of my Life

My beautiful friend Tracy(and yes my name is Tracy too so we started out on a good note!) wrote this post for me. Her words make me feel like there is real hope for an Autism enlighten world. This all happened about a week and a half ago, right after we saw too many Autistic children in the news for elopement and drowning.

OK, so they weren’t actually the worst five minutes of my life, but that’s just luck.

Something has come to my attention, and I can no longer stay silent. First of all, I am a parent of two wonderful girls, and no, neither of them is autistic. I do not live in the world that most followers of this blog live. I follow Mommy Buddy, because she is my friend, because I adore all of her children. I love to engage Emerson and see how he interacts with the world. I laughed out loud when I found him dancing in my shower, well, after I got the razor out of his hands. And that is the thing about autism that I am learning with Emerson. Where they go can, and will simultaneously make you smile, change your thinking, and terrify you.

After months of my promises to help, Tracy relented and joined us at a pool party. Our older girls were celebrating a classmate’s birthday and we all had a great time, end of story, boring guest post.

Except the happy ending was pure luck. Towards the end, after we moved from the pool to the clubhouse (with a locked gate between us and the pool), Tracy needed to change a diaper, Emerson was happily eating pizza. She asked me to watch him.

This was the “hand off.” If you don’t know what I mean, you probably aren’t a parent, and definitely not the parent of an autistic child. http://www.heartofsailing.org/Docs/Autism%20Safety%20Toolkit.pdf describes this as the moment that responsible adults change who is monitoring the autistic child. This is not someone asking society to take responsibility for her child, this is one parent to another, or in our case, one parent to a trusted friend who has offered to help “in any way.”

And now I am going to interrupt myself. According to http://nationalautismassociation.org/resources/autism-safety-facts/, In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger after wandering/elopement. I knew this when I took responsibility for Emerson (Tracy told me before she gave responsibility for him to me, so that I would understand my responsibility better). And while I knew wandering/elopement was a potential issue for Emi, I later learned that 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 (taken from the same web site).

And back to my story. I started strong. I was in it to win it, this was my chance, I was gonna prove that I am helpful and trustworthy. I stared at him. He didn’t seem to be aware of it. I stared at him some more. I knew he could slip away at any moment and I was ready. Then his sister got up to get a piece of pizza, and I helped her out. He was still there. I resumed staring. Then the woman next to me asked me a question and I answered her. When I looked up later one minute, two minutes, three?, Emi was walking into the building with his mother.

 It isn’t so much that he got away from me but that I didn’t even KNOW he got away from me till he was back.

Have I mentioned there was a pool on property? Have I mentioned that 91% of U.S. deaths reported in children with ASD 14 and under were due to accidental drowning?

His mother found him standing at the gate to get into the pool area. And I can guarantee one of my nice neighbors would have let him in. He was dressed for a swim and there was obviously a kids party, which would have made strangers comfortable letting a child into the pool area.

I inherently understand that to call that the worst five minutes of my life is melodramatic, but my brain can create so many other scenarios where the cards did not line up right for us. The “what ifs” that play through my head are dark, and scary, and leave me unable to look a friend in the eye because I have let her down in a way that NO parent should EVER let another parent down.

And yet, she is still speaking to me.

Because he has gotten away from her too. Because she knows how hard it is to keep track of an autistic child.

And anyone who thinks you can monitor the safety of another human being 24/7, regardless of effort, is fooling his or herself. Or just plain mean (I have not ruled out crazy), and completely ignorant. All any parent can do is her best. And with Autism there is a steep learning curve. And we give thanks when we get to call it a learning experience and move on to another day.

I know my friend has been under attack for her views on this matter, and I could not stay silent. I have five minutes of experience in being the sole protector of an autistic child, her autistic child, and I just thank God he survived me.

And our hearts are filled with compassion for those who are not so lucky.

For additional support/resources. Try http://awaare.org/ for help in creating a wandering emergency plan, brochures to share with neighbors, and preview questions that could help first responders in the event of an emergency. And remember: “Search Water First!”

Now, if someone could help me down from my soapbox, it is pretty high up here . . . 

Why I do what I do

I remember back a million years ago, to the end of 2008 or so. My son was about 16 months and it was becoming obvious...he was different. He was so laid back and not at all demanding so it was easy to brush off my fears and say "He's fine. Boys are just less clingy right?"
Wrong.
These were the early days. My mother was pushing me to find out what was up with him. He wouldn't really respond to his name and wasn't talking at all among other weird things. His babble was this crazy alien babble and bar codes were like the coolest thing on the planet. Something was going on, but what?

"I just need something I can google!!"
My mother would chime over and over again.
Finally she usurped my authority and emailed Easter Seals. I'd like to say I was a graceful, proactive mom who called ECI myself about my 18 month old and my concerns, but no. My Mama did. He started services immediately, January of 2009 at 19 months for speech delays. He soon qualified for occupational therapy and the A word started floating around. Again it was my mom who kept going back to it, while I tried to ignore it, like a buzzing gnat. I have to say my mom kept me sane in those days. I started getting google happy myself. It seemed like the only outlet to the HEAVY question mark that floated around my sweet baby boy's head. What was going on with him??

In those early days I tried so hard to find people going through the same thing. Having the same fears. I know lables Get a bad rap but It's almost like a kind of purgatory not having one. Not knowing why your baby isn't like all the others. Feeling that crushing question mark permeating every aspect of your family's future, because let's face it, your mind will go to the worst possible place when given free reign.

I would write here and there when I found that the pressure was going to make me burst or pop some other much needed valve. We ended up lucky and only had about a 6-8 month wait to get in to see the developmental pediatrician. My sweet 27 month old BABY was given an official diagnosis of High Functioning Autism and Sensory Processing Disorder. I can remember after they told me, looking at me I guess waiting for me to break down. All I could feel was this inappropriate laughter bubbling out. That question mark was gone!! Albeit replaced by a puzzle piece but that at least meant a direction to move in, a group of people to seek out... Something to freakin GOOGLE!

After that, over the years I kept thinking about that awful time, before the diagnosis. That was the loneliest, most frightening time of my life. After that I would randomly meet a new parent, see the effects of the heavy question marks that had so recently been all over my face and end up pouring my heart out to them, knowing exactly where they were and just how hard not knowing was. I would describe our experiences and see how just hearing that truly helped. It made me want to help more.

It wasn't until 2011 that Mommy Buddy from the planet Autism was born. I would call Emerson buddy so much that one day he looked at me and said "Mama... Buddy?" He always seemed like an alien being, to be figured out, but bound to me, like I was supposed to be his liaison to the world and help him understand it. And vise versa.

So I finally had a place to compile all of my word doodles and observations in one spot, rather than lose sheets of paper that ended up as the back of scribble MASTERPIECES.

Over the last year and a half I have connected more than I ever thought possible. I had no idea Mommy Buddy would become my life line. I have met SO many wonderful people and formed REAL bonds. Whenever I see a brand new page start I feel overwhelmingly motivated to help them. Give them the opportunity others gave me, because I can see that they too are addicted to that feeling of need. NEED to help the parents still in that purgatory, still living shrouded in the worst fears for their child. And the ultimate feeling of community and FAMILY that comes from being a member of the "I love an Autist" club. Like any family we have our issues, we fight over things we all feel passionate about, but we support each other like nothing else. I'd say that is the very most unsung benefit after diagnosis. Our community makes me feel like I have an army behind me where ever I go and together we can truly change the world for the better.

A teacher tells her side...

(Received by me March 13th)


March 1, 2013
Reported by Mrs. G

"I arrived in the classroom around 9:35 AM. Another instructional assistant took Emerson to Specials because I was working with another student that was having a melt-down and needed my attention. When I arrived, the IA told me that Emerson had a wonderful computer class and that she would bring me his point folder in a little bit because she forgot it.

I had another student with me in the classroom that was calming down, so I distracted him by allowing him to participate in the lesson that I was presenting to Emerson. The goal right now for Emerson is to work on comprehension of reading and to do this, retelling stories is a good way to practice. The Kindergarten students were reading a Dr. Seuss story as per there lesson plans for ELA, so we did so as well.

I turned on the computer to show it via YouTube, but had complications with the technology. I thought I had it fixed several times, but called both students back and forth from the kidney table and my desk because I thought they were going to have to watch it from my laptop. Emerson was doing very well. He was listening to what I asked him to do, and was patiently waiting at the kidney table for my instructions.

I was finally able to fix the technology problem and both students watched the read-aloud of Dr. Seuss’ Horton Hears a Who. After watching the story once, I asked comprehension questions to both students. I realized that Emerson was only able to tell me parts of the story, so I decided to let him listen to it again. At this point, I was still trying to maintain my other student, so I brought the bean bag over for him to sit on and watch the story again.

When I sat on the floor beside both students, I got a phone call from Mr. S telling me that Mrs. Quigley was sitting outside my classroom door on the floor. He said that she had her ear on the door and was on the phone. He was worried about the way she was acting and if anyone knew about it, so he told me he was going to tell Mr. H. I asked him if he could stop by the classroom before he went downstairs so that she would stand up and possibly come inside to observe instead. He agreed and quickly came down the hallway.

When he arrived at the classroom, he told me that she didn’t budge and that she was trying to ask him questions that he didn’t feel comfortable answering. I told him that he didn’t have to answer them if that was the case, and e could direct her to either me, Ms. R, or Mr. H. He told me that he was going to get Emerson’s folder from PPCD and to tell Mr. H and that he would be right back. He did this quickly. When he came back, she was still attempting to ask him questions outside the classroom. He brought the point sheet in to me and then left the classroom to go work with another student. Mrs. Quigley remained outside the classroom hiding from view.
I continued on with my lesson. Through-out this whole time, I was using choices to help guide Emerson to re-tell the story and to give me details of what he watched. I would give him two answers, one was right, and one was wrong. He did very well after he watched the story the second time.

After this activity was over, we moved on to working on Lexia. At first, Emerson didn’t want to work on Lexia, he continually said that he wanted to play on cool math. Even though Emerson said no, he eventually complied with my directions and sat at the computer. It took several times for him to keep the Lexia program open, be he finally did and we began working on the next section of the program.

In the middle of the activity, he started to make noises and cover one of his ears. I gave him time to process and I asked him to use his “big boy words” and tell me what was wrong. I gave him choices to pick in order to express his feelings. I asked him if it was loud, if it was too much color, did the noises bother him, did he want to take a break, etc. He continually said no, but complied and opened the program back up. He started making noises again after starting Lexia and I gave him time to process and take a break at the computer for about a minute or so. The entire time, I was sitting about a foot away from him.

He continued to make noises with his hand over his ear. I explained to him that he had done a wonderful job at computer class, at re-telling the story, following directions, and he only had to complete one lesson and he was free to play on cool math before we went down for lunch. He continued to make his noises and say no... at this point I hear Mrs. Quigley behind me and Mr. H came rushing up behind her. She began to yell at me saying that she knows her son and this was a full- out meltdown and that I obviously did not understand what was happening. She picked him up and she put him in her lap after she sat in the other chair at the computer station. I did not feel comfortable. I stood up and told her that he had been telling me that he wanted cool math and he was attempting to escape the given activity. She yelled over me telling me that my statement wasn’t true and that he wasn’t escaping. I looked at Mr. H and backed up telling him that I was extremely uncomfortable. I stood by him at which time he told me that I was okay.

Both Mr. H and I stopped talking and I listened to what she was saying to Emerson. She was asking him if he was okay. He told her that he wanted to go home. She explained to him that he needed to stay at school. She then asked him in specific words if he was trying to escape the task that I had assigned to him. His response to her was, “Yes.” She then explained to him that he needed to listen to everything Ms. G told him and that he needed to follow directions. At this point he was calm and she put him down. She explained to him that she was going to talk to Mr. Halbert out in the hall and that she would see him in a minute.

I continued to work with Emerson for the next 5 or 10 minutes on the activity. I shortened the lesson and allowed him to only complete a part of it. At one point, he asked to take a break on the bean bag. I praised him for using his words, and allowed him to sit on the bean bag for a break. I set the timer for three minutes, and explained to him that after it went off, we would complete the activity. He said no several time, but eventually got up when the timer went off and sat down at the computer again. It took a little while, but when he was done with the activity, I praised him for doing a wonderful job and that I was so proud of him for following through and completing his assignment. I gave Mr. Halbert a thumb up because he was looking through the window on my door.

At this time, I asked Emerson to get his folder so that we could go to lunch. He stood on the blue square and I waited until it was clear to open the door. When we walked out, I praised his choices to his mother and she seemed happy. She explained to him that she was going downstairs to talk with Mr. H some more and that the silver car would be picking him up when school was over. She then corrected her statement saying that she was wrong, and the van would pick him up. She told him to enjoy his lunch and have a good rest of his day. He said he wanted to go with her several times, but after she reassured him, he began to walk with me down the hallway.
We then walked down the hallway to the elevator. I dropped him off at the cafeteria with PPCD and came back to my classroom."