A different road

Lex and I started down a different road from Nate roughly a week ago. Nate and I separated and he moved down to his mom's house a few hours south. We have started the paperwork to get a divorce. Now while some divorces are all about blaming each other ours won't be. I can't blame him for all the problems in our marriage, I'm just as much at fault. We've been trying to work on these things since March and no matter how much we improve we always fall back into the bad habits. In the end we are doing what's best for us and Lex.

Lex is living with me most of the time and will be staying with Nate part time so that he always knows his dad loves him. I do have to say that even just being separated a week has proved most beneficial for Lex. I know I'm not as frustrated as I was and that trickles down to Lex, I'm not as quick to be annoyed when he's refusing to communicate and instead just wants to scream. He's getting more one on one interaction because of all the time it's just me and him.

I love being a single mom so far. We've had a few rougher spots (changes in his routine/schedule, cutting his nails and hair) but I would say overall it's been a good week. Lex makes me laugh when I feel down and I make him dinner lol. I think I'm just eating up that he has so much affection to give and since Nate's not here I'm getting it all. We've also developed new games in everything we do and discipline isn't a problem since I'm not trying to battle differing views. I just hope that Lex realizes that we both love him very much I just happen to be a bit better at handling my difficult child when he wants to be difficult.

To the north or the south?

I've come to a fork in the road and I have to decide which direction to go. Neither is the "right" way they are just both very different. They are both going to have winds and bumps but of differing varieties. If I was just making this decision for me it would be easy but I'm not. I just know I can't keep going straight because that leads to nowhere and more frustration.

Happy Birthday Lex!

It's hard to believe my little boy is 3. It seems like we just celebrated his first birthday. I love having this little kid in my life. As tough as things may get his smile can always make me smile, his laugh makes me laugh and he's just a rough and tumble little guy. Autism may be his "label" but he is always just my Lex.

Yay for change!

Lex had his first day of special education pre-k on the first and he LOVED it. I had a hard time with the idea of getting him on the bus and him going to school and then back to daycare but Lex took it in stride. He had no problem getting on the bus in the morning (I was the only one to shed tears), his teacher sent a note home letting us know how the day went and that he will be a great new friend for the other kids and he made it back to daycare with only minimal tears. He went again yesterday and was incredibly excited when he saw the bus pull up in the morning. Today was rough for him, there was no school. When we were leaving for daycare a bus drove by and he ran down the block after it because he must have thought it forgot to stop for him. When we got to daycare he wanted to sit in the spot we normally wait for the bus at but since I had to get to work I insisted he come into the daycare with me which of course set him off (he thrives on routine and this was throwing a wrench in that routine). He was not happy to be at daycare and I can't say I blame him. We will be switching his daycare in just over a week to a home based center where he can have more one on one time with someone that has more special education/autism experience than his current teachers do.

At the end of next week we'll be losing our services with Birth to 3 since he is aging out of the system. I'm really sad that we won't have David and Paula coming into our home weekly. They have been wonderful in the last year and I know Lex loves them. I think for our "wrap up meeting" on Monday we are going to make thank you cards. It's been a gift having them to help us with the tough times and celebrate the good times it's like having a family member leave. After all, Lex isn't the same kid he was when they started with him.

Lex has started babbling and talking a ton more in the last couple of weeks. He is regularly using his signs and he's attempting many more words. Each new attempt makes me excited for the future. I dread the idea that he's growing up and won't be my baby forever but I love seeing him grow, he's an amazing little kid. Each new skill, each new word and each new moment (tantrum, happy or somewhere in the middle) makes me glad to have him in my life.

End of one road, start of another

Tomorrow is going to suck. Tomorrow I'll be putting my almost 3 year old on a school bus to take him to his first day of special ed pre-k.
I'm sure he'll do great, maybe have a rough start of it but in the end Lex will thrive. He is so adaptive when it comes to play environments and his teacher said that's first and foremost what her classroom is that learning happens naturally when the kids are playing and interacting. I'm excited to see how he handles the transition to "big kid" status. He'll ride the bus to and from school 4 days a week and 3 of those days he'll go right into daycare.
I on the other hand will not do well with this transition. My feelings are so mixed, pride and worry and sadness have become my 3 shadows these days. I'm so proud that Lex will be doing this, that he will take most of this in stride and be a better person for it. Proud to simply be the mom of this amazing little person. I worry that he'll have a rough go of things just like the transition to the 2 year old room at daycare. That he may not work to his potential because he could be stressed out. Lex isn't a big fan of change and this is a pretty big change. I'm really sad to see the end of the baby days nearing. Since he'll be my only child (barring some miracle) it's hard for me to let go of the sweet baby. He hasn't been a baby in almost 2 years, he's been this rough and tumble, mess and monsters kind of boy but I really just want to hold onto him where he is. Every day is a new adventure, he's talking more, dancing, jumping, and being infinitely more affectionate than he ever has been.
I attribute a lot of the new found skills to all the hard work he does, Nate and I working with him and then his wonderful therapists David and Paula being there and being amazing resources. It's hard to imagine we'll be navigating the world of autism and sensory integration dysfunction without them in 2 weeks since they have been our guides but it'll have to be something we do. We know the skills it's just time to apply them.
I'm not ready to start down this new road but I think Lex will grab my hand and pull me along no matter what.

Busy and frustrating

It's been a busy couple of weeks here. We completed Lex's evaluations for entrance into the school district and they were pretty right on in relation to where he is developmentally and socially. He'll start his first day of school on October 1st but his last meeting with his current therapists will be the week of his birthday so we'll be doubled up for 2 weeks.

Last weekend we did the Northland Autism Walk. Our team met our goal of $450 and passed it. We had a lot of friends and family come out and walk with us, all of them rocking the tie dye shirts I made. Team Lex was amazing.

This week Lex was moved over to the 2 year old room at daycare. While I wasn't happy about this idea I know they have to do it, one because of his age/size and two because of the numbers of kids they have to maintain in each classroom. The first day resulted in Lex clinging to his old teacher, but I had no information about the day because she didn't know. Second day was more of the same but I sent a communication notebook so we could try to relay information back and forth. After that day I was not happy with the classroom teachers. They made it seem like they weren't going to make an attempt to keep Lex interacting in anything. Nate and I had a meeting with the center director and the teachers yesterday to discuss their concerns and see what can be done to make this easier on everyone. I felt very attacked at this meeting like I was asking them to do something that's not in their job descriptions and that they just don't have time for a kid like Lex. They seem unwilling to do his brushing protocol or even give him a couple of minutes to unwind away from the other kids before bringing him back to projects and circle time. I understand that they have 14 other kids to think about but they need to think about Lex too. I got the feeling during the meeting they really want to have us leave the daycare so that's my intention. I don't want to but I want to do what's best for Lex.

Best part of my day.

Since I know sometimes I can have a hard time seeing the good things in my life I wanted to share the best part of my day.

It wasn't the fact that the doctor I work for wasn't on call. It wasn't that instead of the 19 patients a day we've been seeing we saw 10 out of the 11 scheduled. It wasn't knowing that my brother was picking up his puppy and that meant no more puddles on my floors. It wasn't even the peanut butter bar the doctor I work with bought me.

It was the 10 or so minutes I spent on the floor just cuddling, playing and laughing. I didn't focus on the fact he was doing so well at holding his attention. I didn't focus on the dozen or so finger prints followed by occasional drops of spit on my glasses. Instead I focused on his laugh, so contagious it makes me smile just to think about it. I focused on the kisses that turned into playful bites on my cheeks and shoulders. I focused on what an amazing child he is, how lucky I am to have him and how excited I am to be home with him all day tomorrow, even if I won't feel that way after a full day of trying to keep him and our dog out of trouble. Tonight for that short while it was just about a boy and his mom and their shared joy, laying on the floor, making noises and memories.

Frustrated

Lately I feel like I've been stuck between a rock and a hard place.

Lex has been a bit more difficult than normal because I haven't been getting my mid-day break since he has started the process of quitting his afternoon nap, which makes him crabby by 5pm. He has also figured out that he is big enough to climb out of the tub during bath time. The first couple of times he climbed out of the tub I thought it was very cute but now I'm not terribly fond of the drenched floor and 2 year old streaking through the apartment. I am proud of the fact he's making strides developmentally even if it's not through speech. He has also started using the sign for cup (well his approximation for it) and he's very proud of himself when he signs to me and I jump up to either get him a new cup or refill the one he hands me. Even with the increase of communication he is still throwing tantrums regularly. I know a big part of that is the inability to fully communicate what he wants or needs to us and that's he's 2.

Some days I just want to join him in the tantrum. I've been feeling stressed between the amount of housework, taking care of Lex and going to work that I have to do everyday. I know that I'm not the only one here that can pick up the daily messes, wash dishes and take care of Lex but I am feeling like it's all my responsibility. I go on strike when it comes to housework but I tend to be the first one to give in. I can't handle the clutter and mess, I can't fall asleep with a very messy house.

Another part of my stress is our total state of being broke. No matter what I do we still have several bills that are late, items that we need that we can't afford and having to hope that we don't have a major emergency or that the car won't break down leaving us stranded.

I just don't know what to do anymore. I know that we'll get through this all somehow but right now things are pretty dim.

On a good note both my brothers are currently home. Matt is just visiting and he brought his girlfriend home to meet us all. Karl now lives a block from me and stops in frequently. He also brings his puppy, Chloe, by for us to puppy sit when he goes to hang out with his friends. It's just nice to have him nearby and Lex is eating up his time with Uncle Karl because they can rough house, watch cartoons or both wear hats and sunglasses and look like studs. They are too funny.

Weekend work

I can handle doing this type of work on the weekend. :)

Our trip

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

I've been reading this poem a lot lately. It's in more than one of the books I bought on ASD and in a few I've borrowed from the library. I kind of feel these days that it is really accurate for us. I freely admit that I never expected to have a child that would be attending speech and occupational services so often let alone a child with Autism. But I really wouldn't change anything about him. He may have major meltdowns (what 2 year old doesn't?), he may kick, bite, hit and pinch me regularly but he's still my Lex. He sings "rolly poly" and "icky sticky" with me all the time (not the actual words but he shows me the hand movements he learned at daycare), he loves to snuggle with me and we run around like a couple of crazy people in the evenings to help wear him out. I'm sure if you ask me in a few years I will have very few recollections about the tantrums (with the exceptions of the scars he has left me with) and many memories of all the sweet, fun things we do.

I'm rather enjoying our trip to Holland. Italy has nothing on this.