Saturday, May 29, 2010

Oh, and I almost forgot...

We have officially been accepted into the Autism Clinic I mentioned in a previous post. They have reviewed the paperwork that I filled out, as well as the paperwork from Andy's pediatrician, and they believe Andy does warrant a full evaluation for Asperger's Syndrome.

We are now officially on the waiting list for an eval. It will be up to 6 months before we actually get screened, but I'm so excited and hopeful.

Thank you everyone for you kind words and support over the last few months.

This is great news and I wanted to share!

It's been another rough week...

This week was Andy's last week as a first grader. We got home from vacation on Sunday, and he had missed a full week of school. Because of that, Monday he was nervous and excited to go back.

When I picked him up after school on Monday, I could tell he had been crying. He said that a half hour before the end of the day he got upset that school was ending and started to cry. His teacher asked him what was wrong so he wrote her a note saying he was sad that school was ending.

That evening, he cried on and off throughout the evening about it. He would be fine, then the tears would start again.

I don't think it's about school so much, as it is the change. He's never done well with changes to schedule or his routine. I think the end of a school year is pretty anxiety inducing for him. I mean, he will go to summer school, but it will be a new teacher, different kids, everything about it will be different.

The rest of the week was the same...he would get emotional at different times about the end of the year. It was frustrating and saddening at the same time. I felt so bad for him, but when we were at the grocery store and he all of a sudden started crying about it again, I wanted to say, "Seriously? Give it up already!"

I would never do that, of course, but sometimes this is just exhausting. It's hard to always appear sympathetic when he cries for a week. It's hard to give so much to another human being. It's emotionally draining.

But, it's what we do because we are mothers, fathers, or siblings of someone with special needs. We do it because we love them.

Here's hoping that the transition to summer school is less painful...

Tuesday, May 25, 2010

Sleeping while away...

I was nervous about taking Andy on vacation. I was nervous about the normal things...the lines we would wait in and the inevitable crowds.

But most of all, I was nervous about the 4 of us sleeping in a hotel room together. Andy has always slept in his own room. He's never been one to come into our room, or sleep in our bed. I had no idea how he would do sleeping with all of us in the same room, much less sleeping in bed with his brother.

Maybe it was because we were so exhausted each day, but he slept well. So well, in fact, that he took a nap for the first time in years! It was magical!

Monday, May 24, 2010

We just returned from the most Magical place on Earth...

We spent 7 days in Walt Disney World, and it certainly was magical.

I was worried about how Andy would do...crowds, lots of waiting in lines, overstimulation, the heat.

However, he did wonderfully. Instead of acting out when he was overwhelmed, he became very quiet and retreated into himself. He would zone out and tune everything out.

He was very loving during the trip, very complimentary, and seemed to really, truly, enjoy himself.

It really was a magical trip. I'll update in a few more days once I've caught up with life.

Sunday, May 16, 2010

Ready, and Waiting...

I've filled out the paperwork. I've talked to the doctor at the clinic.

The papers were given to the pediatrician for her portion to be completed.

Now we wait.

We will be getting called with our appointment information soon. It will be a few months before we actually get in, but I am excited and hopeful.

The clinic sounds amazing. I spoke to one of the doctors at the clinic, and the evaluation process sounds thorough. It sounds much better than the neurologist who, after only 20 minutes, insisted my son does not have Asperger's.

I will keep you posted. Once we have an appointment, I will yell it from the mountain tops. I'm so excited to have the chance for Andy to be evaluated by this great clinic.

But most of all, I'm ready to finally have a definitive answer one way or the other.

In the meantime, we wait.

Andy's school finally made a decision about summer school. With the recent budget issues, they thought they weren't going to be able to offer it. But, at the last minute, they came through. It will be only 3 weeks, and half days, but I'm grateful. Andy going a whole summer without school would equal a nightmare in the fall.

They've selected his teacher for next year, and I hear she's phenomenal. She's been teaching for years, and seems to be warm and fuzzy, which he needs. She's won teaching awards, and I've heard a lot of wonderful things about her.

Hopefully our evaluation will be completed before the start of the next school year so we can get an IEP in place before the first day.

That's it for us. We are excited and, ready and waiting!

Sunday, May 9, 2010

Today I am Thankful...

I know I've had a lot of poor me moments in the last few months. I have had a lot of bad days, a lot of stressful appointments and meetings...

But, today I am thankful. Thankful that I brought Andy to life 7 years ago.

Thankful that I have experienced the sleepless nights, the illnesses, the meltdowns, the appointments, and the 504 meetings...

Lots of people are never blessed with children. Lots of people yearn to be parents but never get to be.

So, I will endure the stress, and the tears, and the pain, and I will be thankful.

Thank you, Tom, for loving me and helping me become a Mom. Thank you for being a terrific Dad and playing board games for hours with the boys.

Thank you, Andy, for being my first born...for teaching me what true love really is. Thank you for making me realize how much I can possibly love another human being through the good and the bad. Thanks for rubbing my back when you stand next to me. Thank you for your brilliant mind and for keeping me on my toes. Always.

Thank you, Nate, for being my second born. Thank you for teaching me that I can love another child just as much as the first. Thank you for your sweet face, and your stubborn personality. Thank you for your "lovins" that you give me whenever I ask. And thanks for making me laugh. Every single day.

I have a lot to be thankful for, and even more so on this day. I'm so grateful to be a Mom, especially to such wonderful, loving little boys.

Now go and tell all of the important women in your life how much you love them.

Friday, May 7, 2010

A Guest Post from Hartley Steiner

I want to welcome Hartley Steiner to my blog today. I've been following Hartley's blog for some time, and I am sure you will enjoy her guest post today. It's a subtle reminder about why we, as special needs parents, must remember to take time for ourselves. Enjoy, and Happy Mother's Day to all!

“Do you want to go to Australia with me?” My husband asked casually while I stood at the stove cooking the taco meat for dinner the other night. Such a ridiculous question didn’t warrant an actual verbal response, so I just looked at him out of the corner of my eye and gave a sarcastic smirk. He smiled, and said, “I am being serious. If you and I both start working on it now, we could find someone to take care of the kids for a few days and you could come with me to Australia in June.” He really was serious. And you know what, I wanted to go.

It isn’t going to surprise anyone to find out that spending a week away from our kids is something that we have NEVER done – heck we haven’t even made it 48 hours away from our kids in the last seven years. SEVEN YEARS.

Normally when I get asked by friends or relatives about traveling for an extended period of time, I always say my dream is to ‘be away from my kids long enough to miss them.” And it is true. The kind of stress I am under every single day as a special needs parent is not the kind that dissolves with a 20 minute shower. Not even close. And I spent years using that excuse to justify not spending any time taking care of myself.

But that changed about a year ago.

The light bulb went on when I stepped on the scale last spring – and well – let’s just say that instead of displaying a number, it actually said, “One at a time, please.” That was the first sign that I had stopped making time for myself.

The other signs were equally as disturbing; I was eating horribly (what my kids left behind, or fast food drive thru), wasn’t getting any exercise (chasing Matt should make me thin, but no such luck), hadn’t been to the doctor in years, never mind the dentist, and was down to having my hair cut 2 times a year at best, no matter how awful it looked. I would NEVER accept those things for my kids, so why was it OK for me?

I realized then that respite time had more to do with how I was treating myself – that taking the 20 minute shower was symbolic of self value and, more importantly, a stepping stone on the way to Australia. (OK, so I didn’t actually know the whole Australia thing then, but I knew it was a stepping stone towards something.)

I made a commitment to treat myself better. To treat myself, my health, my body, my mind, all of my needs, as if they were as important as my son’s needs.

The irony is that because we have special kids, we somehow have convinced ourselves that taking care of our own personal needs is a luxury. It’s not a luxury. A Mercedes Benz is a luxury. A Rolex is a luxury. 1000 thread count sheets is a luxury. Taking a shower, spending time with our spouse, or even going out with our friends is not my definition of a ‘luxury’.

The well kept secret here is that we can choose to take care of ourselves AND our kids.

I started my new self-care campaign by committing to getting myself a shower, if not every day, hopefully every other day. Do you think that was easy? NOT EVEN CLOSE.

My choices were to either, a) awake before my kids like my husband does by getting up and into the shower before 6am or b) find a way to distract my youngest son Matthew while the older boys were at school, and jump in then.

Now, I am not a morning person and I don’t drink coffee because I can’t stand hot beverages, so that ruled out option ‘a’ pretty quickly (I may just be the only SAHM on the planet that doesn’t sip a latte every morning, but thus far, Starbucks hasn’t seen a dime of my money).

This left me choosing option ‘b’, which requires a great deal more creativity and even a tinge of daring on my part. Matthew, as much as I love that small child, is a mess waiting to happen. Which means, no matter how well laid my plans are, no matter what awesome ‘new’ show I have recorded, no matter how many bribes he has in front of him, he will be NO WHERE near the spot I left him when I get done with my shower.

But, I am willing to take that risk.

And when I get out of the shower, wrap a towel around my head, and run through the house in my underwear surveying the damage he did in mere minutes, I remind myself that it was worth it. Because I am worth it.

But showering was only part of the plan.

After I had showering under my belt, I began to feel better about myself – dare I say even less stressed, and that feeling was addictive.

Soon I turned my new self-care addiction into going out for dinner with my girlfriends, attending more support group meetings, the occasional trip to the gym, going to the doctor, getting my hair cut, replacing 10-year old clothes with new ones, and going on dates with my husband. I even painted my own nails at night when the boys were asleep.

It was a change of attitude really: A change of perception about me, and about my life. It wasn’t (and isn’t) about just being away from my children, or doing frivolous things, but rather about allowing myself to see me as more than just a SAHM or a Special Needs Parent. Those are only part of who I am.

Taking time to out to take care of my needs allowed me to remember that I am a whole person, not just one label or another.

I spend a great deal of time talking about my family on my blog and in my real life, because I love them and they are truly the focus of my life every day.

But they aren’t the sum of who I am. I am much more. I love to laugh, can bake amazing desserts (cheesecake and lemon pound cake are my favorites), still listen to rap music, enjoy photography and have been infatuated with the ocean since I was 9 years old and decided to become a Marine Biologist, despite getting decompression sickness while SCUBA diving and going through hyperbaric treatment in Hawaii when I was 14. I bet you didn’t know those things about me, right? Truthfully, I’d begun to forget about them myself.

The bottom line here is this: It is OK that I want to go to Australia.

Two years ago, there is no way I would’ve been able to admit that and honor that I needed time for myself and that it would be OK to leave the kids for a week (Although I have yet to master the logistics involved in leaving them for an extended period of time). I know now, that taking time for myself and for my marriage will make me a better person, wife and mother.

And I have proof of it in my daily life – in the way I am able to be with my kids, and honor their challenges. In the way I am able to see my husband and support his dreams. And in the 20lbs I’ve lost without so much as being on a ‘diet’ this last year. Turns out taking care of your own needs is a good idea – and it is never too late to start.

Now, I know all of you are not going to read this and run off to Australia – but my hope is that you do run off to the shower, because as you now know, all showers lead to Australia.

-- Hartley Steiner, Australia bound mom, special needs advocate, blogger at and author of This is Gabriel Making Sense of School.

Tuesday, May 4, 2010

The Good and the Bad...

So....the new place I've been referred to is a Developmental Center at a local leading Children's Hospital that specialies in diagnosing Autism and Asperger's Syndrome. That's good.

However, their waiting list is 6+ months long. That's not so good.


So, that didn't go well...

We had our visit with the neurologist yesterday, and to say it didn't go well is an understatement.

I was hesitant to go back to the guy, because when we saw him 2 years ago he didn't seem to listen, and was quite frankly a bit of a jerk. However, my pediatrician really wanted me to go back to see him again because she thought he would be able to see Andy today vs. 2 years ago. She really thought he would get an Asperger's diagnosis.

My first clue that it wasn't going to go well should have been when the doctor got his reflex hammer out, and without warning my SPD kiddo, whacked him on the leg with it. Andy immediately said, "OWWWWW!!!!! What are you doing? That hurts!!!!!" The doctor continued to check his reflexes without explaining himself, and then rolled his eyes at me really dramatically while Andy complained about it hurting.

After 5 minutes, the neuro said it wasn't Asperger's. He said it was ADHD (again). I had letters from Andy's teachers saying they didn't see any ADHD, I had filled out an ADHD questionaire, but he ignored those. He said it's definitely ADHD and he wanted to immediately start Andy on Strattera.

I said no way, absolutely not. I told him I don't see it. He said, "You see it. You just pretend not to."

Seriously? Where are the cameras? Am I being Punked? Am I on Candid Camera?

Then he said again that SPD isn't "real".

I immediately said, "Woah, wait a minute. Just because it isn't in the DSM doesn't mean it isn't real. It's a finalist to make it in the next edition."

He said, "Well, that's debatable. We'll see."

OMG. Is this guy serious?

I said, "There was a time when Autism wasn't in the DSM, does that mean IT wasn't real?"

To which he said, "You know what they are taking out of the DSM? That's right...Asperger's."

So I came back with, "Um, it isn't getting taken's getting moved under the umbrella of autism."

What a jerk! He obviously has never had anyone question him before, much less someone who knows what she's talking about. He got really defensive, really quickly.

It went downhill from there.

I asked him, if it isn't Asperger's, how does he explain the lack of eye contact. He said that Andy is just self absorbed. I asked why Andy replies off topic in conversation, and he said it's because he has ADHD and isn't paying attention to the conversation.

I asked him why Andy has such severe sensory issues, and he said that there's no such thing. It's just anxiety.

He said the meltdowns are because Andy has an inflated sense of selfworth and wants everything to revolve around him, and when it doesn't, he has a fit.

Wow. Seriously? So, let me get this straight...

According to this doctor, my son is a spoiled, self absorbed, manipulative brat? Does that sum it up nicely?

Needless to say, I thanked the doctor for his time, told him I would not be coming back to see him, and left.

I immediately called my pediatrician and talked to her for a long time on the phone. She was really discouraged because, like me, she thinks Andy warrants an Asperger's Diagnosis. She recommended a second opinion.

Now we are waiting to get an appointment with another neurologist here in our area who specializes in Autism and Autism Spectrum disorders. I'll keep you posted.