Thursday, April 28, 2011

Hope Never Fails (or listens)

About a month ago, I attended a meeting between parents of children on the spectrum and our local school district. It was hosted by a parent-run independent organization whose mission is "To promote, support, and advocate for the education of diploma-bound students on the autism spectrum in grades K–12."(1). Having 2 very intelligent children on the spectrum, I thought it would be a good organization to look into. It would allow me to anticipate potential issues and start learning how to address potential pitfalls. Sounds good, right?

I served as "note-taker" for the preschool forum. It was an opportunity for me to listen in to learn how these children are transitioned from the various preschool programs into kindergarten. The representatives from the school system talked primarily about the preschool programs that have been designated as "PEP", which (from what I understand) is where the majority of students on the spectrum who would be considered "diploma bound" begin their school career. Neither Rachel nor Simon are in "PEP". So, after the session was over, I had a brief conversation to address the potential transition for my kids. This conversation did not happen between me and one of the representatives from the school system, but with the "moderator" of this breakout session, who happened to be an officer with this organization. In addition to being a part of this advocacy group, she is also a social worker for our school's Early Intervention Services group (but a different office than we had worked with) and has a daughter on the spectrum who is diploma bound.

Given this information, I was looking forward to the advice she would have for me. I told her that I have a daughter in the CAPP Program (Collaborative Autism Preschool Program) and, starting during her last IEP meeting in October, have had conversations with her teacher and the representative to the Autism Office about the possibility of her entering a mainstream kindergarten classroom when she is ready for kindergarten in the 2012-2013 school year. CAPP is the most intensive program offered by our local schools. It's a highly-intensive 1-on-1 ABA-based learning system. Many who enter the program are non-verbal. They all have significant issues regarding language, behavior, and impulse-control, as well as many other areas. Rachel has THRIVED in this environment. We had learned while we were still working with Early Intervention Services (Infants and Toddlers) that she responds to the learning system, ABA. I don't think this individual heard anything I said after mentioning Rachel was in CAPP. Or, if she did, she chose not to listen.

She basically told me that my daughter would not be able to function in a mainstream kindergarten classroom. She went as far as to say that she will likely NOT be diploma bound. A child requiring that level of intensity of services at the preschool level will not be able to function in a classroom setting.


This is someone who advises other families coping with autism and other developmental disabilities. Part of her job is to provide encouragement to the families she serves. NOT to shoot down their dreams for their children. She has never met Rachel. She doesn't know how far Rachel has come. She doesn't know how smart my daughter is. She doesn't have any means of knowing anything about her or her situation. She doesn't know that we actually had a discussion to determine if her placement should be changed to put her in a less intensive environment. She doesn't know that Rachel spends part of every day in a typical pre-K classroom to learn how to interact with her neurotypical peers. All she knows is that Rachel is in the CAPP program.

I don't know if Rachel will receive her high school diploma and go on to college. I don't know if Simon will do the same. But I do know that I will not limit her based on her diagnosis. Other children with autism function in classroom settings and continue on to receive higher education beyond high school. And as a social worker working with this population as well as a mother to a child on the spectrum, she of all people should know this. I will not allow this (in my not-so-objective opinion) unqualified and prejudiced uninformed individual to limit my children's potential.

(1) This mission statement is literally copied/pasted from the website of this organization. Because of nature of this post, I have chosen to not provide the specific website detailing the name of the organization. However, these words are not my work and should be credited to this parenting group.

Tuesday, April 26, 2011

When "Routine" Goes Away

It's amazing how quickly even an "Autism Mom" gets sucked into routine. I've mentioned in other posts, both here and in my "guest blogger" spots how we "live by the routine". From April 18 until this morning, our routine has been "on hold" for Spring Break.

We are so used to waking up at the same time Monday-Friday. We are used to getting dressed, having breakfast and getting ready for the school bus. But, during spring break, things are different. We have still been waking up at the same time, but there are no buses. So there's no rush in dressing or getting out the door. After breakfast, we're going downstairs to play, or running an errand or two. We're fighting over the computer whenever we're home. We're watching movies. We're having "Pajama Days". Even our diet is different since Passover began on Monday night (well, it's different for ME -- the kids are such picky eaters that we didn't enforce the Passover rules for them).

We've seen in the past that routine defines us. And not just a little bit, but a LOT. When we do one thing, it's always predictably followed by something else. It's how we get through our days. But, during "spring break", our routines are ALSO on holiday. So, what happens next?

We passed the time. We made trips to the grocery store. We went to a playground. We had a couple of playdates. We actually scheduled a playdate (specifically) for Simon. That one was interesting. We went to a new playground (for us at least). We arrived a little early and the kids were having fun playing on the slides and in the mulch. Daniel found/made some friends to play with and he was set. Rachel and Simon just did their own thing.

When Simon's friend from school arrived, his friend tried to play with him. But Simon wasn't interested. He kept running off. When I asked him if he wanted to play with (insert child's name), he said, "No". I wasn't sure if this was really an accurate answer, so I asked him some other questions.

"Do you want to play with Rachel?"
"Do you want to play with Daniel?"
"Do you want to play with (insert child's name)?"

Ugh -- that's not the result I was hoping for, but it was clearly what HE meant. He ended up spending the remainder of the playdate still playing, but avoiding his friend and classmate. I really hope that his mother wasn't taking it personally. And I hope it was an isolated incident. I really do think that we need to repeat this experience, but am concerned that if Simon really doesn't want to play with this child, it will be a bad experience.

Perhaps it was because he hadn't seen this boy for over a week. Or perhaps he just wanted to spend the time playing with his brother and sister, something he'd been doing for that full week. Or perhaps, he just wanted to do an activity that this other boy wasn't interested in. Or, even possibly Simon was just tired (he nearly fell asleep on the drive home and would have fallen asleep if it took us just a couple more minutes to complete the drive). Who knows.

It's interesting in a strange way, watching how Simon interacts with the world around him, especially when I watch him next to his big brother. Daniel sought out other children on the playground to play with. It didn't matter what they were playing, as long as they would allow him to participate. Simon, however, wanted nothing to do with anyone (except Rachel). This is autism. But I have to wonder how much of his isolationism is truly autism and how much is a personal preference of who he likes and dislikes.

This is one of those moments where it would be nice to have that little window into his head to have that peek inside.

Monday, April 18, 2011

They are still children

And they are still twins. As we were reading bedtime stories tonight, we saw the proof that they learn from each other. Yes, Rachel and Simon may be oblivious to the people in the world around them (at times). But they are also perceptive. And they, as we already knew, are very smart.

Tonight, one of the books I chose (and Kevin was reading) was "Brown Bear, Brown Bear, What Do You See". It's a definite favorite. All 3 kids love this book, Rachel and Simon in particular can't get enough of it. Both programs have used this book on multiple occasions to work on colors and animals, animal sounds -- it's a great book for learning.

Simon's sense of humor has him regularly say something that he knows is incorrect. He will insist on it and then, when he perceives you are going to give in, he announces "Silly Simon!". One such thing is during this book. Instead of a "Teacher", Simon has been saying "Monitor" (we don't know why -- at first we could have SWORN he was saying "Mother", but he has proven to us that he means "Monitor"). Tonight, Simon was willing to accept "Teacher". So, Rachel picked up the slack. From her mouth, she shouted "Monitor!"

We love seeing these moments. In addition to them showing their personalities, it reminds us that they are twins. That they learn from each other. That they rely on each other. And that's something that they will have forever. They know each other in ways that others can't even begin to imagine (unless they themselves are a multiple). Their relationship defies description. And we are privileged to see this nearly every day.


Friday, April 15, 2011

I think I've grown....

For some reason, today I've been rethinking what I've gone through over the last 2 years. From the moment that the developmental pediatrician told us that both Rachel and Simon were on the spectrum to me pushing for the votes for this blog to be recognized, what have I learned about myself? I was thinking about how much everything has both changed, and stayed the same. But I also started thinking about my own journey towards acceptance of my children's diagnosis. And realizing how much further I still have to go.

I found myself thinking of a conversation I had a year and a half ago with someone from Infants and Toddlers (Early Intervention). I remember calling her needing to talk (not sure about what anymore). We tried to coordinate a time, but that proved difficult not because of our schedules per se, but because of me and my family (H1N1 hit this house pretty hard, including Daniel developing a mild pneumonia). But we eventually did get together to talk. Again, I don't remember the original topic of the conversation, but I do remember moments. I remember after talking for a while, she asked me if I blamed myself for what happened to my children. I remember telling her "No, I know that I didn't do anything to cause them to be autistic." And I did know that. But I also remember thinking how could it NOT be my fault. I have 3 children, 2 of whom have autism. I love them (and always have) as much as their older brother. But did I ignore their needs in favor of their brother or my own exhaustion? What choices had I made that could have led to this outcome?

The other thing I remember from this conversation was something that I was immediately ashamed of, and still am embarrassed to admit it. Anyone who is faced with a situation that they are unhappy about seems to have this comment running through their head, but most of us are smart enough to not say it. I can't say that. I said it. I still can't believe it. "I didn't ask for this!". Whoever would ASK to have a child with a disability that could prevent them from living an independent life? Who would ASK for a parenting career full of additional worries about their children? Who would ASK for the challenge of raising one or more children on the spectrum? None of us ask for this. But we have it. It has happened. And the best we can do is live with it. I don't remember what she said when those horrible words left my mouth. I was either too mortified (with myself) to listen to the answer or have just blocked it out, again due to the fact that I was so mortified to have asked the question in the first place.

This conversation happened approximately 7 months after learning that Rachel and Simon were on the spectrum, and about 2 months after learning their official diagnosis. Since then, we've seen progress and regressions (in both of them). We've watched them develop language. We've seen them learn to begin playing with others. We've watched them take on the challenges that are presented to them, and have learned to introduce new ideas and experiences.

And I've embraced the idea of being an"Autism Mom". I'm not fully there. I still fight it. I still strive for them to fit in with their typical peers and force them to have experiences with them. I still want to see them succeed in school and in life without their differences defining them. But when I think of where I was on the day of that conversation and the day I asked that ridiculous question and where I am today, I have to admit, I'm pleased with the progress that I have made.

Wednesday, April 13, 2011

Please Vote for Me!!!!!

All right -- there is something really wrong with me. It's April 13 and this is my 6th post already this month. But there's a couple of good reasons for that. (1) It's "Autism Awareness Month" and this is the time to get the word out as best as possible and (2) I'm being web-published outside of this blog and wanting as many of you to enjoy these other writings (and continue stroking my ever-growing confidence).

Well, thanks to all of you (with a shout-out to one of my specific followers), I've been nominated for an Honorable Mention alongside the Top 25 Autism Blogs per The nomination came approximately 9 hours ago and I'm currently in the lead! This is doing wonders for my ego!!!!! This blog has undergone a couple of transformations since I started it. This brings it back to my original intent of using it to inform and support the growing population of families dealing with a child having an autism diagnosis. When I started it, I had a very difficult time finding writings that weren't of the "Dr. Wakefield is the Autism deity!" or "Vaccines are evil!" variety, both of which rubbed me the wrong way. I was angry, lost, confused, and terrified. I wanted to show a different viewpoint. I didn't know if anyone would ever read it, but I knew I was putting it out there.

Now people are noticing! And all I can say to that is "COOL!!!!!"!

So, now I ask you, please come and vote for my blog. Please click on this link and indicate that you "Like" My Family's Experience With Autism ( I would VERY much appreciate it!!!!

Thanks for your support!

Tuesday, April 12, 2011

Just One

Today, another post I wrote has been "published" on the internet -- this time it was the submission I made to Parent Magazine's GoodyBlog. It is part of the series, "Voices of Autism". I also noticed that it's been "tweeted" and "re-tweeted". I am really just floating on air this week. This is the second web-based publication for me, not including this blog (and since this blog is under MY control, it barely counts on that score) in less than 5 days. I suppose you can say that I'm taking my role seriously when it comes to informing others about autism this month....

At the beginning of the month, I made a challenge to anyone who would listen -- try to get one person to "GET" it. One person to not glare at an autistic individual. One person not to accuse a struggling parent of "spoiling" their child and claiming that their children would never behave in such a fashion. One person to understand that autism is outside of control of those affected and their families. One person to not judge but offer help or even just simply walk away if they're not in a position to help. One person to not ask to change their seat in a restaurant because an autistic child has been seated nearby. One person to see that we are facing an epidemic and a challenge that we cannot be fully prepared for. One person....if we can all convince just one much easier our lives could be.....

Hopefully, these efforts have allowed me to fulfill that challenge.

Saturday, April 9, 2011

2 Quick Things

There are a couple of quick things I want to talk about tonight.

First of all, a bit of self-promotion. I mentioned in my last post that I was going to be a featured "Guest Blogger" on the meta-blog "Multiples.....and More". Well, the link is there for anyone who is interested who hasn't seen it yet. I hope it isn't too heavy handed. But it IS honest.

Second, I wanted to talk about Daniel's birthday party. It was at a facility filled with inflatable toys, called BounceU. Translation, it's LOUD. There are powerful fans that keep everything inflated. And we were concerned that Simon would have trouble dealing with the noise and the insanity of a birthday party for a 6 year old. We were (surprisingly) wrong. He had a BLAST!!!!! One of the "party professionals" really helped him out and pretty much attached himself to Simon (and to a lesser degree, Rachel) to help them deal with potential sensory overloads. And they both had SO MUCH FUN!!!!! And overall, we don't think there was anyone there who didn't have a great time (talk about a successful kid party)!

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So, today was a completely EXHAUSTING day, but it was an amazing one!!!!! Daniel had a wonderful birthday party, and we got to have the fun of watching all 3 of our kids (and approximately 20 others) have a great time playing together.

Friday, April 8, 2011

Tooting my own horn

I am still on a bit of an emotional high. As many of you may be aware, the April edition of Parents magazine did not contain any publicity about Autism and Autism Awareness Month. Many individuals in the autism community were outraged and began to bombard the magazine with letters and emails. They heard us. They are dedicating a portion of their "GoodyBlog" in a section called "Voices of Autism" to families stories about autism every day in April. I wish it was more, but at least there is now SOMETHING.

They asked families to provide the magazine with specific information. I saw this, thanks to another blog that I follow, and submitted my family's story. And, on Wednesday, I received an email from the magazine. They have decided to include my story. It will be "published" on Tuesday, April 12. From what I understand, they are still requesting stories from families. If you see this, please go to Parents Magazine's GoodyBlog and the specific information they request is listed and feel free to submit your story.

Also, last night, I received an email from the administrator of another blog I follow (Multiples and More). I wrote a guest post for them last year during Autism Awareness Month and I asked if they would be interested in me doing the same thing again this year. She thought that would be a good idea and I wrote a post. That is going to be published tomorrow (Saturday).

Can you see I'm excited? And can you blame me? This is how I spread the word. This is how I honor Autism Awareness Month. This is my contribution.

Tuesday, April 5, 2011

Daily Challenges

Simon needed a haircut. Daniel's birthday is next week and his party is on Saturday. Simon's haircut was overdue. Because Simon has an early dismissal on Mondays and people don't seem to get haircuts on that day, Mondays are the best day to do it. So, we went.

It was a beautiful day. The sun was shining and it was the perfect day to go outside and play. But we had a job to do. We had to get a haircut. So, when Simon got home, we got into the car. We did our normal car seat dance. And we drove to the hair dresser that specialize in children's haircuts. And he was promised a trip to the playground when the haircut was over. I didn't hide what we were doing. He was OK with it. At that moment.


We walked into the store. He recognized it. He covered his ears, but didn't scream. He didn't even cry. He just walked over to the spot where they keep the books. He asked for Thomas. He found the book "Where The Wild Things Are" and looked at the pictures. All was well. We sat there and he "read" the book to me (each page, "Monsters"). I showed him a Thomas DVD and he smiled. I gave it to the woman who would be cutting his hair. She started it but Simon wasn't ready. We waited a little longer, then I started pushing the issue. I brought him over to the chair. I spun it around. That's when the screaming started.

He sat on the floor. I sat behind him. I put him in a hold. He had his hands over his ears, but allowed me to hold his arms near his side and keep his legs still. The haircut had begun. She worked with us sitting on the floor. Simon screamed. But he didn't try to kick. Then the screaming quickly dropped to a cry. Then, suddenly it stopped. His hands stayed over his ears, but he was all right. And, 5 minutes later, the haircut was all done.


After paying, I kept my promise and we went to a playground nearby and played for about 40 minutes before we had to leave and prepare to pick Daniel up from school. He had a BLAST! And he proved that he has become a Climbing Master!

So, this is twice where getting a haircut wasn't a total catastrophe. Does that mean that we're passed this? Who knows. But I'm finding great relief in just the thought....

Saturday, April 2, 2011

My take on Autism Awareness

Well, it's April 2, World Autism Awareness Day, and consequently all the autism websites and bloggers I know are doing their best to promote awareness of all Autism Spectrum Disorders. But personal bloggers have an advantage. We don't just report the numbers and the statistics. We report personal stories. We report real-life situations. We report what we personally live through every day.

Just over 2 years ago, this family was thrown into "The Autism World", as our family's pediatrician phrased it. And at the time, I thought that was an amusing way to refer to it. But she was absolutely right. From that time on, in many ways I've felt removed from the rest of the world and found myself an unwilling member of an ever-growing group of families, faced with raising children with autism. These children don't see the world the same way as their neurotypical peers. They don't interact with the world as their neurotypical peers would. And because of these diverging views of the world, I've been privileged to restructure my own world. And I've found my own new obsession.

Since March 12, 2009, Autism has changed me and my life. Autism is everywhere. And it's part of everything that I do. I consider how Rachel and Simon will react to any new activity before deciding if it's worth trying. With Daniel, I used to say, "Well, let's give it a try and we'll just make it happen." Now I have to prepare the family for any new experience. Social stories has become a standard, even if it's not done in that form. Using YouTube to demonstrate similar experiences is another thing that I've learned to incorporate into introducing new things. I tend to ask for advice from teachers when planning a major event (like the Laurie Berkner Band concert last month). Again, with Daniel, we would just simply GO. But Autism has taught us the need to plan and consider every detail so that we can respond quickly if things don't go the way we envision.

We depend on routine. We depend on predictability. We depend on consistency.

And we have come to depend on Autism.