I came to motherhood with a load of emotional and mental baggage.  When I was 18 I was diagnosed with severe chronic depression.  That meant that I was having more than one depressive episode within a four month time lasting more than one week.  It was determined that my depression started to manifest itself when I was in 5^th grade.  I want you to stop and think about that for a moment.  From 5^th to 12^th grade I was experiencing hell on a frequent basis and no one knew what was going on.  I was self-destructive, I was irrationally emotional, I lashed out, I would go from being happy and content one minute to crashing and crying my eyes out the next.  People around me attributed it all to hormones.  It was later determined, after my first week’s stay in a hospital, that I also had Bi-polar type 2 and Post Traumatic Stress Disorder (PTSD).  The Bi-Polar type 2 meant that I got all the lows but none of the highs.  The PTSD wasn’t from just one instance but years worth of events surrounding my mother’s alcoholism and the abandonment I felt.  I also suffered some other events that I do not want to go into at this time, but needless to say- they left many scars that I am still healing from.  After my mother’s sudden and needless to say traumatic death I also developed Anxiety Disorder.  Again, stop for a moment.  At that point I was 21 years into my life and have already been diagnosed with FOUR emotional disorders.  I was on 13 pills for four medications a DAY.  Just to be able to function.

Let’s fast forward.  I have now gotten off my medications thanks to the amazing support of my husband, family and friends.  I have learned a world of coping mechanisms to help me through rough patches.  That’s not to say I didn’t still have episodes or times where I felt the world was about to crash down on me.  But I had learned how to get through them a bit better.  Now- add a baby.  Did you just cringe?  Are you worried about how that affected my emotional stability?  Good- you should.  Because, as you can guess, shortly after my first child was born I was diagnosed, on top of my other issues, with Post Partum Depression (PPD).  Keeping score?  We’re now up to five diagnoses. Oh, and a new baby.  And no real support network. And a husband who was finishing his PhD and looking for jobs in areas we had no connections in.  And all those coping skills I had learned?  It’s hard to do needlepoint when you’re taking care of a newborn.  Or to go for a bike ride, or work on a play with a local community theater, or spend a few hours uninterrupted working on puzzles or writing.  So if all that was going on how did I manage?  Partly by remembering one thing- I did not want my daughter to grow up with a broken mother the way I did.  I SWORE my children would not have to worry about if they did or said the wrong thing would it set off mom.  Not that I’m saying I thought my mom’s issues were my fault-but I learned to tip-toe around her to avoid setting her off.  So with a strong determination, a great husband, and a good therapist I worked through my emotions, my fears.  I found a group of moms with kids a similar age as mine and we got together once a week.  I found time and ways to hand my daughter to someone for an hour or two.  I learned new coping skills.

Now that first child is 3 ½ years old and I have a second daughter now 10 months old.  I went through the same issues again, my PPD came back and it raised the cadre of issues from my past to the forefront again.  The new coping skills I had learned again were ineffective when tending to two children.  This time though it was easier to manage.  I had found a larger network and support of friends.  I knew what to expect from my own emotions.  Without the support and help of the many moms I knew I would probably shown my eldest what I feared the most, that mommy is broken.  I still have my bad days, I still go through times where I fear my own mind.  But I know I have people to turn to.  And I KNOW I can get through this, because I have before.  And that’s what matters most.

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?"
"Yes!"
"Do you want to play with Daniel?"
"Yes!"
"Do you want to play with (insert child's name)?"
"NO!"

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.

 

{originally posted on My Family's Experience With Autism on 4/26/11}

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.

-Ilene (DRS_Are_Best)

Children with Special Needs Moderator

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