The end of what once was and a new beginning...

Six years later and I can honestly say that autism has changed nearly ever aspect of my life.  I feel our path was similar to many, you get the diagnosis, you fight autism with all your might, you lose some family and friends, you settle in to acceptance and realize that if he doesn't change at all, well that's just fine cause he's awesome....and then you realize just how much it all took it's toll, on everything.

I can say for certain that our family hit rock bottom last Christmas. When most families should be so happy and enjoying time together, mine was falling apart.  When considering the divorce rates for families that deal with autism is a staggering 90%, its not surprising that we've had our moments.  Autism took most everything from us, the careers we wanted, our savings, our dog, our house, relationships we cherished, but mostly...the life we thought we'd have, the one we worked to build together, our dream, which had no room for autism.

When pregnant, most moms have visions of rocking their babies, feeding them, watching them grow up, graduate, get married, having grand babies to snuggle....those are the dreams I had and then autism.  My dreams changed from what will he be when he grows up, to will he ever talk or will he ever be able to have a job.  That's a hard reality to accept when the dream seemed so obtainable.  I think I moved into that full acceptance last year and realized the rest of our life was in turmoil. I hated my job, our financial situation was a joke, and Steve and I had grown so far apart.  Nothing was going right.

Then the new year, yeah 2012, an opportunity for a fresh start and hopefully some good news. And I received news that a position I had worked so hard for and was initially offered, was put on hold. It was another dream, one that was going to help solve our financial situation and help me get my career back on track, shattered.  I was devastated, but I didn't give up. I kept looking. Then all in the same week, we found out the autism insurance legislation passed and Tyler said MAMA!  Yes, he said Mama!  It was an unbelievably emotional week.  They say you are given what you can handle but never more.  I feel like someone heard my prayers. I couldn't take anymore.  I felt unappreciated in every aspect of my life all of my efforts to make improvements were not working.  I was running out of energy and hope.   Then "MAMA"...... yeah Ty!  I followed Tyler around with a video camera for days trying to get him to say Mama.  After that moment, the words kept coming, and they still do!  We are so proud of him and what this could mean for his future. 

Fast forward a few months where we make a decision to move as our rent was going to increase and we were trying to find ways to get back on our feet financially. I always say Ty is my diamonds, as he's been quite an investment (albeit worthwhile for sure).  I also applied for a job at the University of Michigan Health System in the development office.  Something just seemed right about it, great people, great teamwork, great energy, and an AMAZING cause...Plus our new digs were literally 1/2 mile away.  Well they must have thought something seemed right about me too because I was offered the job, yea!

Some may think that a new job alone is exciting enough but the opportunities and the change that this would have on our entire family was significant. Most of which.... Tyler will be eligible under the new autism insurance legislation beginning January 1!   Five years of battles, calling, writing letters, going to the capital, robbing Peter to pay Paul, taking out loans, borrowing from family, finally he will be covered for speech, OT and ABA therapy.  There are so many other positives about the job that I just know it's the right place for me and am so excited about my future.

Now on to Ben, we had his parent teacher conference last night and based up the news last year, and knowing how much he has been struggling at home with reading and not feeling he could do it, we were worried.  We found out that he's doing just great, right on track. He does have some self esteem/anxiety issues that we need to work on but by now, we are pros from working with Ty all these years.  SO PROUD OF BEN!  We are hoping to get him into a non-competitive group like Cub Scouts or something to help build his self esteem and a support group of peers and families. We are also hoping within the next year to get him into some sib-shops (support groups for siblings of children with autism), so he can bond with some other children and know that he is not alone.

As for Steve and I, we stay committed to staying committed. We knew as soon as we had the diagnosis that things would never be the same and we agreed to not give up even if the other person does.  It's a philosophy that's really helped us when the going gets tough.  Very thankful to the family members who watch our kiddos on occasion so we can get some much needed time away together. On the outside, people have no idea how hard it is on couples when you have a child with autism. It's an unbelievable amount of pressure that you'd never even think about, and especially with twins, the safety issue alone was huge. I just read an old blog about us being worried about Ty hurting other kids because he'd hurt us and his brother.  WOW, he's come so far. He wouldn't hurt a fly now. 

This road has been so difficult, one I would have never imagined I'd have the strength or energy to make it down, but I finally made it to the end.  The boys are both doing great, Ty is talking which we were told the likelihood was slim to none, and we managed to stay committed to our marriage and our family. I'd say 2012 has been an amazing year.  The key is to let go of the old dream, to allow a new one to happen.  I have a new beginning that begins right now.

Mommy Guilt Blows....

I'm sure every mother struggles with mommy guilt from time to time, especially if they have more than one child. Having twins, I was quite sensitive to the fact that I wanted my kids to feel equal, have equal attention, etc. Then you throw in the whole autism thing and well it was just nearly impossible. The more decisions I made in favor of Tyler, the guiltier I felt about Ben. I remember sitting in a parkin glot crying one day when I had to make a decision that would benefit Tyler but prevent Ben from going to preschool for another year. And then...when we did find a preschool we could afford, Ben was doing horribly, actually regressing and spent a few nights screaming in anger about how he didn't want to go. Talk about a stab to your heart. So yeah... mommy guilt blows and I felt it in full force yesterday.

I find it nearly impossible to manage life's tasks and responsibilities at perfection. I always tell myself, and others when they are feeling inadequate, to just be the best they can be at that moment. I.e. if you are at work, then be the best worker you can be, if you are at the park with your kids, then be the best momny you can be and not worry about cleaning the house or bills, etc. Basically, to try to focus on whatever the priority is at that moment. My priority right now and in the past few months has been to work on strengthening my marriage and finding creative ways to get our family into a better place financially. At the beginning of the school year, Ben's parent teacher conference went well. Yes, we all know he is a talker, but other than that he seemed to be doing good and met all of his objectives for entering into kindergarten. When we got some of his standardized testing scores he was low in Math so we started working on math stories at night instead of regular stories. THen we got a note from the teacher last week to set up parent teacher conferences. This mid year conference is for those students who aren't quite where they should be at this point and may need some extra help. Ok, sure thing. I want to help whenever we can.

So last night was the conference. It was also the night that the boys to go the ACC for the study so it was just Mommy going this time becuase Steve takes the kids to the ACC (ben loves the study by the way). Ben's teacher is fantastic and she started off by saying Ben is a lovely child, always happy, full of life and energy, gets along well with all the kids, doesn't start to much trouble, she said she's convinced he'll be the next late night talk show host, LOL. But that he is not meeting his objectives and if he doesn' t improve on a certain # of items, he will have to go to summer school. In theory the idea of summer school doesn't bother me, Ty's been going since he was 3, its just that I feel so guilty that he's that far behind and he's not been my focus. In fact, I'm not sure Ben's ever been my #1 focus :( I've overcompensated and even spoiled him at times as a result of that fact. Which leads to my next concern.

There were times in the past I had a concern that potentially Ben had Aspergers... as he progressed in his new preschool those fears began to fade...and so did some of my mommy guilt. In yesterday's meeting, the teacher said that Ben's biggest problem is his inability to focus. He's very scattered and has a hard time sitting still and concentrating on anything for a period of time. Now, compared to Tyler, Ben's has stellar focus, but apparently compared to typical children his age, Ben is having trouble. She said she doesn't like labels and it's too early to tell but the label ADHD was thrown out there. My heart sank...oh Benny, I'm so sorry I've been focused so much on Tyler and his skills and his nutrition and his everything that I have let this go unnoticed. So I left the meeting with homework of my own...sat in the car and cried for a bit. Talked to Ben briefly about how he's a great kid and that mommy and daddy are going to help him meet his school goals and we started on a little work last night and will come up with a more specific schedule of activities each night. I also briefly talked to him about nutrition. He's a carn junkie as many of you know, my concern with him is the same as Tyler. He'll just choose not to eat if it's something he doesn't like. We work on creative ways to get him to eat better but it doesn' tseem to work. The teacher says this is common with kids with ADHD as it sometimes takes an arm and a leg to get those kids to eat and sometimes nutrition falls by the wayside as they just need calories. The thing is, i've spent years and many $$$ on Tyler's diet, eliminated gluten and casein, food dyes, additives, etc. Giving him enzymes and probiotics and all these other things to help aid digestive and give him a clear head to learn. Not Ben :( So we told Ben things are going to change with his diet as we want his belly and mind to feel better. I'm not sure yet to what extreme as GFCF diet is so expensive but it has helped Tyler tremendously and it has been shown to help kids with ADD/ADHD as well, so we'll see. Either way we are going to make sure ben has a more "clean" diet as well as a big push to help him meet his objectives at school. It's time to make Ben a priority.

On another note, I sat in on a panel discussion at the Autism Collaborative Center this week. It was for those of us who blog about autism and then people could ask us questions, etc. It was interesting. There were 4 woman on the panel and each of blog for different reasons and about different things. Some are to help others with resources, some are to share info about their kids, some are to vent, etc. It was interesting. Lots and lots of blogs out there, for husbands, wives, family members, siblings, even grandparents. I barely have the time to write in this one lately it seems so not sure how much I'll go looking but I love knowing the resources are out there if I need them.

We have Ty's official IEP meeting in March where we will find out where he is on his goals this year and discuss a plan for next year. I'm not sure if he will be offerred extended school year or not, we will see. And then the dreaded summer is coming, where I try to find an affordable plan that meets the needs of both boys... and find a way to haul them around to each of these activities while working full time. Life gets tricky sometimes for us all eh.

I guess that's all for now, not much good news to report, I just got a huge reality check and it sucks.

January 2012

Oh my goodness, I've been horrible about updating the blog lately! I missed the holidays!

Biggest news over the holidays is we went with round 523 of trying of potty train Tyler but this time... it's finally working :) He is doing fantastic, even has a few completely dry days here and there. We take him potty every 30 minutes at home and at school. For the most part he goes every time, he's just starting to tell us when he has to go, sometimes pee but recently he began telling us when he has to go poo. Sometimes he's right in the middle of already going but what's good is he's recognizing it and letting us know. We had a secret santa that gave us an itouch and we added applications to it that Ty didn't have available on his IPAD and initially that was his reward for sitting and going on the potty. We also used an app called the Potty Journey (I think) about a little boy named Jacob and Ty loved the app. He actually started using the app to tell us he had to go potty and now he uses it to tell us what comes next, i.e. flush, wash hands, etc. Now we no longer need to reward his good behavior, he just gets excited at the fact that we are excited that he went potty. He's doing really great.

Santa visited our house on Christmas Eve. We had previously tried to go visit santa. A local brewery was having a sing along with Santa and pizza for kids. We were attempting to go there for dinner but as soon as we walked in we knew it wasn't going to work. The place was packed, no where to sit. Ty immediately headed for the kegs in the back room, either to get away from everyone or to get his drink on so that it wasn't so stressful, LOL. So within about 30 seconds from walking in we were headed for the door with two crying kids. One who couldn't get out of there fast enough and one who wanted to stay and see Santa. Ahhh the joys of having twins where one has autism and one is typical. So Ty and I stayed home and Dad and Ben went back and Ben had soooo much fun. There is a pic of him playing foosball, his first time. Since then, one of our neighbors gave us their old table so that he could play more often.

New Years Eve we followed the tradition of spending it wtih my dads side of the family. My aunt just built a massive pole barn and they threw a big bash, had a big inflatable, basketball, etc. Attaching a pic of Ty making a basket, he was very interested in playing basketball in the inflatable and the big hoop.

School is still going fantastic. He does all kinds of activities and worksheets on his own that always amaze me. Like he rolled two dice and added them up on his own, etc. The other day he really surprised me though. We were at home and he saw a january calendar that Ben had made in school. He then asked for a crayon/marker (by pulling out the bin in the closet) and then he wanted a piece of paper and he started writing out numbers in chronological order from 1 - 25. This is the first time he has ever wanted to use a crayon or marker at home of his own free will. He prefers to use his finger on his IPAD, so it's awesome that he was choosing to use a good old fashioned writing utensil and paper!

This was the first year that Tyler seemed to understand Christmas and be interested. He loved the ornaments (even broke a few) and loved sharing his thoughts with us by using his December page on the Dynavox. He'd point out rudolph, santa, lights, etc. whenever he could. He also would try to say Ho Ho Ho.... came out more like Ah Ah Ah but I knew what he was getting at.