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A New Experiment

As I’ve noted before, I often feel like I’m conducting experiments in  how I raise my child.  Connor is not typical, nor is there any clear way to treat autism.  Thus much of how I parent is based on trial and error, collecting data, and performing experiments.

The new experiment for this summer is trying out a typical preschool.

Observation: Connor has entered a stage in his development in which he is mimicking classmates and other children he comes into contact with.

Problem: Given that Connor spends the majority of his time with other special needs children, he has begun to mimic symptoms and problematic behaviors of these other children.  His language also stopped developing, keeping it on par with classmates.  Connor has displayed frustration and displeasure in attending his regular special day class.

Hypothesis: Being around neurotypical children will encourage Connor to use more language and develop typical social skills, while reducing problematic behaviors.

Proposed Method of Research: Connor will attend a typical preschool, with a developmental program, two days per week.  Connor will also engage in extra curricular activities with typical peers, such as swimming lessons, play dates, and unstructured social environments (ie playing with unknown children at parks, beaches, etc.).  Connor will continue to attend special day class two days per week, as well as participate in a reduced ABA schedule, regular speech therapy, therapeutic horseback riding, and physical therapy/gymnastics.

Findings: TBA

Obviously when I was mulling over the problems and possible solutions in my head, my reasoning was not so clear and scientific.  In fact, I distinctly remember telling Connor’s psychologist that a large part of why I wanted to conduct this experiment during the summer was that I had “a gut feeling” that this was the right thing to do for him.  I’m hoping the science will back me up!

For the most part, at least in the most current research, the benefits of inclusion seem to outweigh the possible problems, but there are still causes for concern, still reasons to worry.  The recent research encourages me that this is right move for Connor, who is on the high functioning end of the spectrum.  And so far, Connor seems to be loving his new school! In class he isn’t speaking to much, and he has had a few frustrations, but at home I can already see some positive effects.  Just in the week since he’s started, Connor is using full sentences and spontaneous language more often than before.

Now maybe this is just a conincidence, and maybe it’s not.  Only time will tell.

Here are some articles on the benefits of inclusion:

Why Inclusion Benefits all Kids:

http://www.parents.com/blogs/to-the-max/2012/11/06/uncategorized/why-inclusion-in-classrooms-benefits-all-kids/

Benefits of Inclusion:

http://www.ehow.com/info_8656410_benefits-inclusion-preschool-children.html

Maryland Department of Education list of Inclusion Benefits:

http://olms.cte.jhu.edu/olms2/3841

 

Solidarity Sister!

This will be my last post for the week, despite the fact that it is only Tuesday.  Tomorrow is the 4th of July and that means my little monster will be home for several days, school free.  This roughly translates into mommy being “leisure free.”

Speaking of my little monster, I “talked” to a friend of mine via text message last night (Connor was up waaaaaay too late so there would be no actual conversation with adults).  She is struggling with her own special needs child.  And some of the statements she was making reminded me so much of….well, me.

Raising a special needs child is a daunting task.  It is exhausting, challenging, and humbling.  It’s a reminder of how little control we have over our lives, when all we want as humans and adults is to exert a little control over our corner of the universe.  Raising a special needs child is an exercise in patience.  It is a test of your faith, your confidence, your own love for your child.  You feel like a failure.  You feel like you are failing your child, failing yourself, failing your friends and family.

But that’s what I want to stop.  It was a hard lesson for me to learn, but I finally did.  I cannot worry about the opinions of my family and friends.  I cannot worry about what others might think of me or my child.  I cannot worry about what anyone else thinks except for people who are invested in doing what is best for Connor.  And anyone who judges him or me is not focused on what is best.

People who look at a special needs child and hold them to the same standard they would an average child just don’t understand.  If they’re important to you, you can take them time to try to educate them.  But it’s important to remember that no one is going to ever completely get it until they’ve walked a mile (or a week) in your shoes.

Because of this, parenting a special needs child can be incredibly lonely.  It is a truly isolating experience.  Only you know what is best for your child, what might set him off or might light him up.  You have the knowledge that he is unlike other children, even though he may outwardly look average.  Your parenting experience is tremendously different from most other people you’re going to know.  There are support groups, chat rooms, organizations meant to support you but even then you miss the company of your friends who are parents because you expected to share this experience together.  You had hopes and dreams of joining the same tee-ball teams, the same PTA meetings, and bbqs on the weekends.  But your child needs different things, different help and instruction, different types of social interaction.  And you have to let go of all those expectations.  You have to say goodbye to your dreams and make new ones.

For a long time I didn’t want to take Connor to public places for fear he would have a meltdown.  I was nervous about the stares and comments I would get from strangers as Connor hit me or screamed or lay on the pavement in the middle of Disneyland (he’s done all of these things).  I was initially embarrassed that Connor would behave like this in public!  My child was acting like a maniac!!  I wanted to pin a sign to him that said “He’s autistic!”, as if that would make everything ok.  I wanted the people staring at me to know I was doing the best I could!

And then I stopped.  I looked around.  Other children are having meltdowns in public places all the time!  It’s part of childhood.  They get over-tired, over-excited, over-stimulated just like my little autistic boy.  Average kids might have a longer fuse, but they’ll still explode!

With that knowledge and a lot of self-acceptance, I stopped caring.  Connor’s behavior is what it is.  It doesn’t matter to me anymore what strangers think.  In all likelihood I’ll never see them again!  Why should I care if they think I’m a bad parent or my son is an out of control menace?!? And if my friends or family dared to say something like that to me, things would not go well for them.  And they would most likely lose the pleasure of our company.

At the end of the day these are the only thing that matter:

I know I’m not a bad parent.

I know Connor is not a bad child.

I know some people are never going to accept either of us for who we are and there’s nothing I can do about it.

I know there are millions of parents out there facing the same struggles, or worse, that I do every day.

I know that millions of special needs children grow and thrive and love all over the world.

I know Connor is happy, and really, that’s all that matters to me.

 

An Abbreviated Break

Or perhaps the title should be “Connor gets jipped.”

Connor’s school schedule has been a little off since the beginning.  As a special education candidate he started preschool just after he turned three, when the school district is legally required to assume responsibility for his education and the majority of his therapy.  One of the greatest blessings in our life has been the early intervention programs Connor has been a part of, first through the Regional Center of Orange County and now through Ocean View School District.  We were lucky enough to live in an area where government programs for the disabled were still nearly fully funded while the rest of the state (and the country, for that matter) struggles to find funds for special education programs, such as early intervention.  But because budgets are such a delicate balancing act, each program is eager to hand over participants to the next program.  Thus Connor started preschool in April, instead of following the traditional school year and entering in the fall.

We had about two and a half months of school, during which Connor was sick probably half a dozen times and missed close to ten days in that time (this is the reality of entering school—your immune systems get tested more than your student!).  By the end of that two and half month period Connor was adjusting to going to class everyday.  He wasn’t even crying most day when I dropped him off.  He’d managed to steel himself for the prospect of separation every day.  In short, Connor had nearly adjusted to preschool.

And then school ended.

The school year officially ended last Wednesday, not to pick back up until September….

Thank God for summer school!

Poor Connor.  If he only knew that he was being forced to attend school while the rest of the county’s students enjoy three blissful months of no class, no work, no teachers.  He would be extremely upset if he knew.  Connor loves all those days of no demands or responsibility!

Thankfully he is not yet cognizant of how the world works!

Because change is such a struggle for Connor, his special education plan ensures that he attends school throughout the summer.  It is also imperative to the early intervention model that Connor receive continuous services until he reaches his communicative and behavioral goals.  What that means is Connor will receive almost constant schooling and therapy until he reaches the level of average kids his age.  Poor Connor gets no summer break.

To make up for the fact that Connor is being deprived of an entire of summer of doing nothing, I wanted to make his five-day summer break great.

So we went to the aquarium, we saw half of a movie in a theater (which I guess is good enough for Connor, because who needs to see the end of a movie really?  It’s all about the set-up!), we went to the park, we swam, we rode bikes, we got a cold.

Ok, so that last one wasn’t on the to-do list.  But we did get a bad cold/flu.  Connor rebounded pretty fast, but I was bed-ridden for 2 of the 5 days.  Not how I wanted to spend “summer break” but hey I don’t have to go back to school today (he he).

We did get to spend one awesome afternoon at the aquarium.  The Long Beach Aquarium, The Aquarium of the Pacific,  might be Connor’s most favorite place in the whole world (outside of my arms of course).  The Aquarium has it’s own icon for Connor’s calendar, so he regularly goes to the calendar, grabs the card, and asks to see “fishies? fishies?”.  So even though we only had a five-day summer break, we had one perfect afternoon.

Connor is fascinated by fish.

As usual, Connor is surrounded by women…and oblivious to them.

“CHEESE!”

Perfect

Care Packages

If raising a child with autism is a war, then all the support I received from friends and family yesterday felt like letters from home.  Though they can never completely remove me from the situation, they can lessen the stress with every kind word.

A couple of comments and texts I received yesterday got me wondering about other parents of autistic children and their struggles.  According to the brief research I did, we are a subject group of considerable interest to researchers.  I came across several scholarly articles discussing the stress levels among parents of autistic children as being significantly higher than those of parents of “average” children. Many of these articles offer an analysis and advice of family, therapeutic and parent intervention.

There are also several support groups online and nonprofit groups that deal with the parents of autistic children specifically, offering them advice on how to cope with the stress and better ways of communicating with their children.

Perhaps I’m alone in this but when I read these support groups websites and all these articles, it just makes me feel worse.  I am giving all I can give on a regular basis.  Many of these sites offer advice on how to do things “better” which means I’m doing something incorrectly, which then spins me into a guilt tornado.  Ugh.  No thanks.

I prefer the care packages I receive from friends and loved ones.  I prefer the simple words of kindness and encouragement.  It’s nice to hear from other parents dealing with similar issues, or have dealt with similar issues, or parents of normally developed children whose kids do something infuriating!

If you’re unsure how to support me (or any parent of an autistic child) here is a nice article I found that offers a thoughtful discussion of what to say, how to say, and what questions to ask.  I know many of us, myself included, often worry about saying the wrong thing.  When you’re talking about someone’s kid, that worry can build to the point that you don’t want to say anything.

What to Say to Parents of Children with Autism by Jean Winegardner at the Washington Times.

Parenting a child with autism can be incredibly isolating for many reasons.

It’s difficult to take Connor out to public places for fear of how he’ll behave.  He may tantrum, shove other children, run away from me, monopolize toys/books/games, etc.  Or he might simply scream the whole time.  We were at Disneyland just a couple of weeks ago and while he had fun for the first hour, he slowly lost the ability to control his emotions and began to tantrum at the drop of a hat.  Every rule we’d worked on, every communication we’d developed, every peer interaction we’d practiced, went right out the window.  He hit me, pushed two unknown children, ran into an employee only area, tantrumed the entire time we were on the train.  Good times. But there are other times we’ve been there when he didn’t cry at all, interacted appropriately, waited his turn, etc.  It’s a very dangerous guessing game to play as to which behavior you’re going to get.  And as the parent you need to be prepared for the worst.  And you need to be prepared to leave any place, at any time, without any notice.

Sometimes that’s just all too much.  Sometimes I prefer to take him to a park that I know will be empty.  Or we’ll go for a walk on the vast wetlands with no one else around.  And sometimes even that is too much, and we’ll just stay home. When we have days like the past few days, I feel like a prisoner (or maybe the warden) in my own home.  This is Connor’s comfort zone.  Honestly, this is my comfort zone as well.  There is nothing that can happen at home that I am not prepared for.  We can be in the same room, interacting, or we can not.  Either way is fine.

So when I get your text, your email, your comment, it’s like a lifeline to the outside world that I’m not quite so alone as I feel sometimes.  Thank you for reminding me that I have friends, family, kind strangers, who care enough to share a moment of life.  Thank you for keeping me company if only for a minute.  Thank you.

And because I’m a woman who likes nice things, when I got an email from Coach yesterday offering me 25% off my purchase, I knew it was a sign from God that he wanted me to have something nice.  So thank you Lord.  I can’t wait for my care package from Coach!

If I’m going to have a child that drives me crazy, I’m at least going to look good on my road to insanity.