Alphabet Soup

Q is for Quirky

2007-03-15T16:40:00.000-07:00

Autism Diva had a post up the other day that struck a cord with me. It was on this abstract that takes a look at the traits and characteristics of parents with children on the autism spectrum. Basically the researcher found that those of us with children on the spectrum have more austistic traits than the control group. So I just made a little mental list of the things I did as a child that a) drove my Mother nuts and b) falls into the types of behavior that is often described when talking about kiddos on the spectrum:

As a child I:
-Was a toe-walker (to the point my Mother took me to the Doctor)
-Couldn't touch newspaper. Could.Not.Touch.It. Made me physically ill.
-Hated lasagna because I couldn't gag the texture of the noodles
-Early talker...lots of words
-Early reader...reading (simple) books cover to cover by 3 1/2
-Was a rocker (from side to side)
-Liked lists and schedules...thrown off by change

As an adult I:
-LOVE lists and schedules...thrown way off by change
-Have sensory issues (don't even come near my belly button...I'll poke your eye out!)
-Must rock back and forth while standing
-Must rub both feet together to fall asleep

Obviously, these are just quirks. But they are quirks I also see in Squish (except for the verbal component...he's not an early talker but kicks ass with his PECS book). I've always thought we're all autistic in some degree. Or that autism is certain traits magnified. Bottom line, we're all quirky.

P is for Party!

2007-02-21T10:06:00.000-08:00

We had a few of Squish's classmates (and their parents and siblings) over for pizza and cake last night to celebrate his fourth birthday. After much discussion, The Hubs and I agreed that while the family party we have for the Squishes every year is fun, this was the year we should invite school friends. But we also knew that having everyone over for one party would be overload for Squish, for his classmates, and for us. So pizza party night was born.

And it was FANTASTIC! The kiddos did great. We bounced on the trampoline, played on the swingset, ate pizza and cake, and then it was over. It was so fun and time just flew by. And honestly, it was the least stressful party we've ever had. Squish was totally at ease with his classmates, and we were at ease as parents knowing that everyone in the room understood us and our unique challenges and opportunities. It was like an instant bond developed.

And when everyone left and tubs were had and pjs put on, Squish looked at me and said, "What happened?" and I said, "We had a party for you, did you have fun?"

"Party" he said with a smile. What a kick-ass way to start his fourth year!

O is for Opportunity

2007-02-20T09:49:00.000-08:00

Today marks Squish's fourth birthday. Last night the whole family was sitting on the couch watching Bob the Builder and snuggling and I was thinking about where I was four years ago. Hugely pregnant, excited, nervous. I didn't have a clue what mothering would be like. I thought I did. I had read books! I had talked to other women! I was ready. Snort.

And then I thought of all that we've been able to experience in the last four years. The highs, the lows, the in-betweens. And the lessons I've learned about myself, about love, about the act of mothering (verb) versus being a mother (noun) and it's been a breathtaking journey. With tears in my eyes, I gave Squish a kiss on his curly little head and said "Thank you." The Hubs looked over at me and said, "What are you thanking him for?"

"The opportunities he's given this family to grow."

Happy Birthday Baby. You are one of a kind and I look forward to all the adventures the next year will bring.

oxox,
Mommy

N is for Nutty

2007-02-02T10:13:00.000-08:00

Um. Is this thing on? So it's been almost a year. Don't really want to backtrack, just want to say that the "regression" that started in May lasted in fits and starts throughout the summer and then ended with the start of the school year. It was a long, long, summer. But Squish rallied, as always, and is now cooking along in his preschool/ABA/Music/OT/Swim lessons and in life. He has started using the PECS system and it's spurred a whole lot of language and comprehension. He's also starting a reading and writing program (at 4!) because he is so visual and has a kick ass memory. And he's turning into a little man. A gorgeous little curly-headed man who is making his way with us right beside him.

I'm going to be updating here more regularly, but it won't always be about Squish and autism. It may be about Squish II (who will be 2 in April!) or me, or the Hubs. That's been a change I've been through in the last several months. Autism has taken a backseat to life. I know it's going to be with us always, but it doesn't get to sit up front!

;) md

M is for Mystery

2006-05-29T21:05:00.000-07:00

So, for the last week Squish has had a "regression" in terms of behavior and in terms of attending to the task at hand. I'm not even sure regression is the right word. In my mind, these periods are like being at the beach during high tide. When the waves come in further, recede, and then come further still. So Squish is receeding before an advance (we hope). Usually there is a leap after this kind of lapse. But it still makes me sick inside with worry that the ABA will just stop working or that he'll retreat from us emotionally.

I know this lapse probably means he is stressed out or burned out and I totally understand that. I'm always amazed at how hard he works and how he does so with a smile on his face. But because he usually is so happy and so easy going when he has an increase in tantrums and stimming and can't seem to focus or answer a question he's "mastered" it really, really freaks me out. It's like night and day and I can't stop thinking about it.

Ok, so I don't know where I'm going with this except to say that just when I feel like our family has got this "living with Autism" thing nailed, another mystery pops up. It's CSI: Autism and we are back on the case to help find ways to make Squish happier, healthier, and more communicative.

L is for Love

2006-05-02T13:47:00.000-07:00

So it's been about a month since I updated last. Sigh. Things get so busy around here and the blog is probably last on my (long) list.

So, we are currently in a space I call "cruising" -- where Squish's therapy is set, we have a schedule in place, and he is making progress. These are times of relative calm and peace. However, we are fast approaching the end of the school year which means another change in schedule, another meeting with the school, another set of decisions...all the stuff I don't like about having a child with special needs. The business end of it, if you will. Squish transitions beautifully, and we are thankful for that. It's one of his biggest strengths, actually. Sometimes I'm the one who has a hard time with transitions!

The biggest change in Squish over the last month is the amount of affection he is showing Squish II. He is hugging and kissing his brother, sharing toys (always with the vocalization "SHARE!" as if to warn Squish II that sharing is temporary), and just being more aware of him in general. Squish II is eating it up with a spoon. He is, and has always been, so in love with his big brother.

So, so lovely to see.

J is for Joy

2006-03-28T09:20:00.000-08:00

We took a trip this weekend that wasn't the most fun or the most relaxing for any of us. I won't go into the details, but we saw an increase in behaviors from Squish and I don't blame him. I had an increase in behaviors too...mostly sighing and grumping about how this trip was kinda a pain in the tushy.

Anyway, let's get to the joy part. During the trip I had this, my first, conversation with Squish:

Squish: Mama?
Me: Yes baby?
Squish (with eye contact and a smile): HI!
Me (swooping up the Squish for lots of hugs and kisses): Hi baby! Hi baby!

Happy, happy, joy, joy!!!

I is for Inspired

2006-03-22T09:15:00.000-08:00

Hooray! It's sunny AGAIN here in Northern California. I can't tell you the good impact it is having on my mindset. Thanks to those of you who commented on the last entry. It makes me feel a little better to know that we are more or less in the same boat (we all have guilt...just placed differently).

So I is for Inspired. I'm inspired by the great weather, I'm inspired by the prospect of spring flowers and being outside and barbeques. I'm also inspired by Squish and his recent and amazing leaps. He is talking so much more...and a lot of it is commenting (Yummy! Hooray! I sad!) -- sure, some of it comes from repeating what he has heard on his Bob the Builder tapes, but it is always in the right context, so I'm 'counting' it as meaningful communication.

He also LOVES preschool. Last night, we went for a walk through the neighborhood and passed the school. I asked Squish if he wanted to show Grandma his classroom (my Mom comes once a week now to visit...I'm telling you, things are looking up!) and he ran to her, grabbed her hand, and starting pulling her towards his room. When we got there he grabbed the locked door handle, looked and me and Grandma and said "Bye-bye." So yeah, I think he likes his class just a little bit! ;)

Squish, after some "regression" has started "percolating" again...lots of neat stuff starting to bubble up. Spring has sprung!

Wishing you all spring sunshine and flowers!
:)md

H is for Healing

2006-03-18T19:52:00.000-08:00

So we are enjoying a somewhat mild weekend here in Northern California. Was about 65 degrees and sunny today. Squish went to a birthday party with the Hubs and Squish #2 went to a birthday party with me. Such is the life with two little ones! We all ended up having a great time, albeit at different parties. :)

This coming week we'll meet with Squish's new immunologist. We are going to discuss changing and enhancing his supplement schedules. And while Squish has never previously tested positive for any food allergies or sensitivities, we are still actively working on a rotation diet and monitoring his yeast levels. It's all about healing his little insides so that he can focus on kicking butt in ABA and preschool. :)

Speaking of healing, I've been doing some too. My heart is healing. I finally realized that this week when I was playing with the boys and I felt light and hopeful and happy. I'm not saying that I haven't felt those things over the past year, because I have. But it was the combination and the intensity that made it different. I've been carrying around a deep, deep guilt that nobody in my real life, not even the Hubs, understands. It's a mostly irrational guilt that somewhere, somehow, Squish's autism is my fault. Either because of my genetics, or my amalgam fillings, or when I tripped and fell when I was 8 months pregnant, or because he got vaccinated...the list goes on and on. And it's a heavy, heavy burden.

But the burden is lifting and I'm not sure why. I've been in therapy, I've been on medication, I've been talking about it, I've been to support groups, and while they were all great and they absolutely help, they didn't do much to touch the guilt. But somehow, it's lifting. And I'm thankful. Very, very thankful.

G is for Great

2006-03-06T13:11:00.000-08:00

Squish started preschool today. Do I even need to say that I cried when we dropped him off? I think it was the quick "Bye" from Squish as he ran to the toy area that did me in. :)

We just went to pick him up and his teacher said, "Squish did great! Great with transitions, great with the sensory activities, great with clean-up!" She said there were a lot of happy surprises about Squish's behavior and performance on his first day. And do I even need to say that I almost died from the cuteness that is Squish in his raincoat with his backpack on, smile on his face, waiting with his teacher at the pick-up area for Mommy? Yeah, almost died.

So instead of the original post I wrote about guilt, I'm posting this one. 'Cause it's been a great day. :)

md

F is for Friendship and Fun

2006-02-28T19:07:00.000-08:00

We've had an amazing couple of weeks since I last posted. We sailed through the IEP process and came out on the other side with everything we wanted! And we also came out exhausted! :) My husband always says this journey is a marathon not a sprint, and I think I've been sprinting towards the IEP since the diagnosis and now I need to set the proper "marathon" pace.

Squish celebrated his third birthday with close friends and family. He did a great job staying around the group, sitting to eat his chicken hot dog and blowing out his birthday candles (although he declined the cake with a "NO" and opted instead for vanilla ice cream). He even opened two presents which shocked me since he had no interest in them at Christmas. Best of all, he laughed a lot and smiled a lot, and looked like a very, very happy little boy.

He's also found his silly side. Lots of giggles and lots of belly laughs. These are things I've missed over the past year. I don't know where they went (they were there when he was a baby) but I'm glad they are back. I cherish those belly laughs.

So here's the part of the post where I ask for advice from you wise mommys (if you are even checking up on this blog as I post so infrequently...argh...working on that)...how do you handle dropping "the big A bomb" as my husband calls it on friends? Not close friends, mind you, but the friends you see a couple of times a year? We ran into a couple we hadn't seen in over a year this weekend at a mutual friend's birthday party and had a wonderful chat about their new baby. They were asking us a lot of questions as they are first-time parents and they had mentioned how they were so tired of people questioning when their daughter was going to crawl (she is eight months old). They said they had thrown away the "what to expect" book and were playing it by ear. I empathized with the often well-meaning but totally annoying "milestone" questions hucked at you by family, friends, strangers. I told them that I, too, threw away the book and haven't looked back. That I trust my mommy gut (or as a friend calls it "Jungle Mama") and work from there. I then mentioned that Squish was diagnosed with Autism and that we get a lot, and I mean A LOT of intrusive questions from strangers and the like about when he'll "talk more" etc. Their faces both kind of went blank and one of them stammered out "well, that (autism) can mean a lot of things" and her partner just kind of looked on the verge of tears. I quickly said "he's doing great. He's in all kinds of wonderful therapy and he's making great leaps. He's awesome." And then we just kind of stood there awkwardly. And then the Hubs and I moved on to another couple.

On the way home, the Hubs and I talked about dropping the "A bomb" and how far we've come in understanding Squish's condition and how hopeful we are for his progress and his future happiness as a beautiful, smart, eccentric part of society. Then we talked about the fact that to someone who isn't as knowledgeable, Autism sounds off all kinds of bells and whistles and images that are probably pretty scary to new parents who are concerned about their child's development.

And then I felt like crap. I wasn't comparing their child to Squish. I wasn't even saying she was delayed. I was just empathizing. I feel like just as I'm getting comfortable with saying "Squish has Autism" I'm realizing that nobody is really that comfortable with hearing it.

Would love the wise-mama thoughts. :)

md

E is for Everything

2006-02-04T17:33:00.000-08:00

A few weeks ago at Church our Pastor gave a sermon on Rejoicing. And challenged us to rejoice in everything. EVERYTHING. Seemed simple enough. Even with our challenges we are grateful and feel truly blessed. This past week though...well, let's just say rejoicing wasn't the first action that came to mind.

This past week our entire home was struck down by the flu. By Tuesday AM we had been to the doctor, we were humidifying fools, we were taking multiple baths to get fevers down, we were throwing up food. And by we I mean EVERYONE IN THE HOUSEHOLD. Tuesday morning also included a somewhat tense meeting with our ABA provider at which they put the full court press on me to keep Squish out of preschool. The really amazing ABA-based, specially for kids on the spectrum, REALLY HARD TO GET INTO preschool. 'Cause, "All the RESEARCH says 40 hours of ABA is what is most effective." Except, I don't think Squish is going to thrive at 40 hours (A WORK WEEK for a 3 year old?!?!?!) *and* I KNOW he needs more social interaction with peers. Something no amount of canned, 1:1 "peer dates" w/ABA tutors is going to really, consistently provide.

By Tuesday afternoon I had gotten a call that my Mom (the same one who is struggling with mental illness and substance abuse) had suffered a stroke.

By Tuesday night I had been convinced not to go to see my Mom (guess the Doctor frowned on her flu-ridden daughter visiting), had rescheduled Squish's IEP for next week, had thrown up a few more times, and had cried like, oh, I don't know, BUCKETS of tears.

Flash-forward to today and we are all doing better. I was able to see my Mom yesterday and it looks like she will make a full recovery. We're all healthier here (not perfectly healthy but close enough) and most of today was spent out back on the kid's swingset in the sunshine.

The Hubs and I are still grappling with the decision we made in regards to Squish. I do believe that a combo of preschool and ABA is what he needs, even though the research supports a 40 hour ABA week. Which is weird for me because I'm usually ALL about the research. But I do think you can come to a point in your journey where your own research (which for us includes observing Squish with peers, talking with numerous parents who are futher down the path than us, and consulting with other therapists) trumps that done by folks in a clinic who don't even know Squish.

So back to rejoicing. I finally sat down and willed myself to rejoice in all that has happened this week. True, our Pastor challenged us to rejoice in the moment, but sometimes I come late to the party. :)

I consciously rejoice in the fact that my Mother is going to recover AND in the fact that she had a stroke. Why? Because we are praying that it is the rock-bottom she needed to hit to realize her mortality and to take better care of herself.

I rejoice in the flu! Why? Because although we were sick, vomiting, feverish fools, all four of us were together with nowhere to go, nothing to do, and nothing expected of us. We piled into the big bed and drank tea and juice and water and ate whatever we could keep down and watched a lot of movies. And napped. And read books.

I choose to rejoice about the pressure our ABA folks are putting on us. They forced us to rethink our choices (again) and because of it, we are even MORE certain we are doing the right thing.

Finally, I rejoice in this moment. When my precious babies are asleep, the Hubs is doing the dinner dishes, and I get to read some favorite blogs while sitting on the couch and sipping some red wine.

In EVERYTHING rejoice. Not always easy to do, but always so uplifting when done.

-md

D is for Distracted

2006-01-30T20:25:00.000-08:00

Hi. So no posting since January 9th. Not that impressive. I did mention when I started this blog that it wasn't going to be a serious commitment. That I had enough serious commitments in my life at the moment. And as if to prove my point, the universe sent down a couple crazy-busy weeks for me to deal with.

There's been the fun stuff: birthday parties that the Squish actually seemed to enjoy! Visiting with good friends! Going to Monterey with the boys and seeing the seals. All really good things.

Then there has been work-related things. Namely, more work. More, stressful, unfulfilling work. And a job I wanted given to someone else.

Then there's been the real crappy stuff. Finishing up all the paperwork and evals for Squish's IEP. Defending our decisions to half our family and our ABA provider. Fighting the urge to constantly second-guess ourselves.

And then there's the really crappy crap...the fact that my mother is losing her battle with mental illness and substance abuse.

So, there have been some distractions around here lately and the blog fell off my plate. As did my blog reading. And I missed it and the folks inside the computer who are so welcoming, insightful, and warm.

So the blog is back on my plate. At least for today.
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C is for Community

2006-01-09T13:40:00.000-08:00

Last Thursday night I attended a "Mom's Night Out" dinner organized by a local support organization for the families of children with disabilities. Although I had been to many seminars and classes at the organization's offices, I had never attended one of these moms-only events. Why last Thursday? 'Cause I knew there would be women there who had gone through the IEP process several times and we are gearing up for our first and I had some questions for them. The kinds of questions that just can't be answered by someone who hasn't been through the process. And yes, as I write this I feel pretty sad that my reason for going was so selfish. But that's why I decided to go this time versus all the times I was invited before. Because I needed something.

When I got there seven women were already seated (I was running late). Six of them were "veterans" -- most of their children were in elementary school or being homeschooled and they had been through everything I had plus some. Then there was me. A "newbie." Son diagnosed less than a year ago, gearing up for our first IEP. Then there was "Jane." Jane's son hadn't received a diagosis yet (he was on a waiting list) and she was pregnant with her second. She said she came to dinner because she needed to talk with people who understood why she couldn't get through the day without crying. Why she couldn't get through an hour without crying.

I went to the dinner to get answers and I got 'em (these ladies are AWESOME), but I also gave them. Jane and I were seated together (pure divine intervention) and we chatted most of the night. Her son and my son are the exact same age. I sat and listened. Listened to her fears (he'll get lost in the system), listened to her hopes (that he wouldn't be 'labeled' autistic), listened to her anger (I don't know why this is happening to us). I told her I understood how hard it is to be pregnant and worried about your toddler (as I had been prior to Squish's dx), how the stress and hormones add up to waterworks at the drop of a hat, how you obsess about your unborn baby and the statistics that 4x more boys are diagnosed than girls, that siblings are at a higher risk, etc. etc. etc. And I told her that as hard as it is to believe right now, that things will get better. I also told her that no diagnosis changes who her son is. He's her son. The diagnosis is just the ticket to the help he needs.

I gave Jane my contact info and she followed up last night with an email thanking me for answering her questions and for listening. I sat at my laptop and cried. Cried because this is a milestone for me. I was able to help someone else. I was able to pass on what had been given to me. And it felt good.

B is for Behaviors

2006-01-05T13:38:00.000-08:00

When Squish was first diagnosed, everyone asked about his behaviors: was he self-injurous, did he scream, tantrum, hit, etc. At that time (he had just turned 2) he didn't really have any. Sure, there were a few tantrums but mostly he just kinda went along with everything. Fast-forward to today and he has a whole array of them. He screams, tantrums, and unfortunately hits (as a last resort when the screaming and tantruming don't get him what he wants). The weird part? I'm kind of celebrating these behaviors. 'Cause they tell me that he has opinions, ideas, desires, and he ain't gonna roll over just because you ask him to.

That said, I want him to learn that there are better ways to express himself. He has some expressive language now and he needs to use it. He needs to understand that there are general social rules that he needs to follow. But he's not even 3 yet...there's time.

Maybe it's because I feel this way that I almost blew up at one of the therapists at Squish's OT clinic this morning. He was doing a great job stringing beads, drawing circles, trying to cut "pway-dow" with scissors, etc. while waiting for his turn on the swing. Squish loves the swing. He loves it so much that when I mention his OT's name "April" he says "swing." And we aren't talking about just any swing. We're talking about a giant swing that hangs from the ceiling and has all these different seats (tubes, hammocks, bolsters, etc.). So waiting his turn on the swing is extremely hard for him, but he did it.

After his turn, during which he said "mow wingk" (more swing) everytime the swing as much as started to slow down, he had a pretty good tantrum. He wanted "mow wingk" and April wanted him to work on his balance by holding one foot up and then the other. He ended up on the floor screaming while April calmly told him to stand up when he was done. This I agree with. This is what we do at home too. Make sure he isn't hurt or hurting anyone else and then ride it out and try to redirect him.

What I don't agree with is the other OT "Mary" taking it upon herself to tell the Squish to use his "indoor voice" and asking him if he had an "indoor voice" and if that was his "indoor voice" she'd hate to hear his "outdoor voice." Our OT just kept focussed on Squish. Telling him that when he was done he could stand up. I, on the other hand, was reeling.

Not more than 5 minutes later the session was over and we were out the door. We got in the truck to drive home and Squish fell asleep. I stewed for about 5 more minutes and then called up the clinic. I spoke with April and told her that I didn't appreciate Mary's comments and that if Squish's behavior was an issue, they needed to take it up with me, not with my somewhat non-verbal 2 1/2 year old. April apoligized and said she'd speak to Mary.

It's getting late and this post is turning into a bit of a ramble, but the bottom line is this: sometimes I feel like Squish's behaviors are easier to understand and tolerate than the behaviors of some of the "typical" folks we encounter.

A is for Attitude

2006-01-03T15:08:00.000-08:00

So, I was talking to my friend on the phone today about blogging, and her blog, and how much I've learned from other people's blogs and I thought, I really need to get serious about writing a blog. Except not. Serious, that is. 'Cause with raising an almost-3 year old son on the autism spectrum and his nine month old brother while being a wife and a work-from-home employee, I really don't need any more "serious" commitments in my life.

But I do need an outlet. And I do need a community. And although I have a bit of both in real life, I know that the internet universe can be so, so incredibly helpful. It's helped me thus far.

So now, what to say? I can say we are in our ninth month of recovering the Squish (my oldest) from his ASD. We are in ABA, music, speech, and OT therapies. We are working the diet/supplement angle (but not in the traditional GF/CF form) -- we are working with an allergist and immunologist. We are gearing up for his IEP. Most of all, we are a family doing what families do: loving and supporting each other. Sometimes that gets lost in all the appointments/meetings/schedules/supplement charts/dietary changes/etc. But we work hard to make sure it is so...whether it's movie night in Mommy and Daddy's big bed (with popcorn!) or a romp around the backyard (even in the rain!) -- we make sure we are always growing as a family.

As I look forward, I see that my attitude and the attitude of those around my family may have the biggest impact on Squish and his progress. We need our family to continue to learn about Squish's condition and how to help him as he progresses. We need his teachers and therapists to have as high of expectations of him as we do and the compassion and the expertise to help him reach those goals. And I need to be knowledgable about his condition and our rights, clear about our expectations, sincere in my desire to work as a unified team with the school district, absolute in my resolve to get him what he needs -- team or not -- and willing to go to the ends of the earth. I need to be the Mommy.