We bought a house!

Autism has a way of demanding attention: emotionally, financially, and physically. It attempts to take away your dreams, your family, and your marriage. We chose to fight.

Emotional: I cannot explain what it is like to hear from a doctor that you are expecting twins. It was so emotional, so much so, the doctor sent us home, and we came back the next week after letting the news settle in. Suddenly, you are not just responsible for one little person, but two, all at the same time. Keeping them healthy, growing, and ready to enter the world was a hard task. I spent 10 weeks on bed rest with thoughts of what they would look like, their personalities, and what they would want to be when they grow up.

Twins add an additional level of worry, worried about being the best mommy you can be and wanting to make sure that each twin is loved equally and never feels the other gets more attention or “more” of anything. Tyler was different as soon as he was born. Strange cry, skin issues, eating problems, but nothing that could be immediately diagnosed. Ben actually had a diagnosis soon after he was born. He has a VSD (ventricular septal defect), but for some reason I still had this nagging feeling that something was wrong with Tyler. In fact, I had worries that something was wrong with Tyler before he was even born. I dreamt he was not thriving; he would not eat. If only I knew that for years to come, his lack of desire to eat would be my # 1 concern.

For the first six months of their lives, we transitioned between a pediatric cardiologist (Ben) and gastric doctors (Ty), and discussions with pediatricians about Tyler’s delays, skin issues, eating problems, etc. Sleeping was rare, crying was often, and life was tough, really tough. I could write for days about the emotions of autism and the domino effect of every moment and decision… everyday life...is all impacted by autism.

Financial: Autism is expensive, super expensive. The autism insurance bill in Michigan passed too late to help our family. At the onset of the diagnosis, and even though we did everything as economical as possible, Tyler was costing our family about $2500 a month. It was not really in our budget but somehow we managed for about four years, mostly by accruing a significant amount of debt. The financial hardships and stress of autism tend to amplify the emotional stress.

Physical: Both Steve and I work full time and continued to do so while we went through very time intensive studies, therapy sessions, fighting to get Tyler help. Many moments spent diving across the floor to prevent Tyler from banging his head into the ground and being injured, hours and hours of stand-offs to do the right thing “behaviorally”. The planning and supports we needed to prepare to have in place just to leave the house was exhausting. Life was exhausting, keeping up with two toddlers, exhausting, autism…exhausting. My marriage was exhausting and then there was still work.

Autism can literally drown you in every way possible. Staying afloat takes an incredible amount of strength and energy but mostly love. Time and time again I tried to reassure myself the decisions I made, no matter how hard, were going to benefit our entire family in the future. Autism forced me to put Tyler’s needs before Ben’s and my marriage most of the time. We could not afford putting Ben in preschool at an age he should have been because of all of Tyler’s extra costs. We had to choose places to live based upon Tyler’s educational needs and no matter how hard we tried to make it work for Ben too, we often found ourselves making a decision that was in the best interest of Tyler and then hoping for the best and fighting for what Ben needed. It was heartbreaking as a mother. I remember each and every moment where I consciously made a decision to put Tyler’s needs first, and how painful it was.

The first seven years of their lives were the most difficult of mine. My marriage became more of a partnership in fighting autism than a husband and a wife relationship. We gave up our home and the dreams we had of raising a family there, our dog who I adored from the moment we rescued him, our careers, and my dream of what motherhood was supposed to be and the reality of what it became…survival for my family and fighting autism for Ty. Ty by the way was a rock star, never giving up. He also shed many tears along the way, endured so many hard therapy sessions, and pretty much most of his toddlerhood was spent working on some skill thanks to autism.

Well autism, I have a few things to tell you so listen up! You cannot have my family, you can’t have my marriage, you can’t have my dream job, you don’t control our lives. You don’t have my son, he has you. You cannot have his voice; he now talks in full sentences and is a thriving happy little boy. Ben is doing amazing in school and literally has a heart of gold, VSD or not. He is the most sensitive, sweetest kid I could ever ask for. My marriage is the strongest it has been in years. Our health is better now than ever. I ran my first marathon this year and Steve has started running and is training for a half marathon. We run together now whenever we get a chance. My career is back on track. I love my job so much that it often brings me to tears, truly an amazing organization that I am honored to be a part of. Guess what autism; I have a dog, just as sweet as the first one and we plan to rescue another. I’ve already started looking.

Most of all, even though I believe a home is in the heart of a family, not a location, our family now has a place to call home again. Yep, you can’t have that either, we bought a new home, a better home than the first. One that will offer a great education to both of our children and at the same school. They have services that will help Tyler well into adulthood. A truly magical moment when we decided as parents to make a decision for both our children, as we know one day when we are no longer here, Ben will be looking after Tyler, and we owe it to both of them to give them the best opportunities in life.

So listen up autism, our family is stronger, healthier, and happier than we were when you entered our lives. You cannot have us, we have you. We definitely made all the right decisions as it all lead to this moment. Not an easy road, by any means, but we are here. Destination happiness; soon to be in our new home. Our love can literally conquer all. We fought and won.

The Cretsingers

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.

Tyler says "ho ho ho"

Tyler is getting very chatty with his dynavox and he has a new app on his IPAD that he's also using a lot to talk. This weekend he told me "good night" when I put him in bed and then requested "hugs and kisses" :) At breakfast on Sunday, he kept jumping off his chair. I corrected him 3 times and finally I said, "ENOUGH, sit in your chair"....he said "leave me alone"...hee hee...grandma and I looked at eachother and tried very hard not to laugh. I love that he's using it not only to make requests or label items but to share his feelings and have normal day to day conversations.





He loves our christmas tree this year. It's the first year he seems to "get" Christmas. He has a December tab on his dynavox that has many holiday buttons like rudolph, santa, tree, lights, etc. He also has a Christmas story on his ipad. I often mention that Tyler is non-verbal and I think that some who do not understand autism think that he doesn't try or he's silent. Tyler is very chatty, in fact, he often sings when playing his piano, I love it. Speaking of which, he does know all of the notes on the piano and is starting to play Three Blind Mice. Here's a video of Tyler playing with the tree and saying ho ho ho.





And a secret santa got us an itouch which we are hoping to use as a reward for Tyler going potty on the potty and for Ben to use since he often gets jealous of Ty's IPAD and although we try to share it, the balance is definetly not equal. Ben doesn't know about it yet, we are workiing to get apps loaded. Yeah!

11/10/11 - OH HELLYEAH!

Last night we took the boys out to dinner. We had Tyler's IPAD and Dynavox with us. I asked Tyler what his name was. He pushed a button on his Dynavox that said "My name is Tyler" (and looked at me as it talked for him). I asked him how old he was, he said "I am 5 years old". I asked him what his brothers name is. He said (pushed a button), "My brother's name is Ben", I asked him his favorite color and he said "dark"... hee hee, gonna have to work on the colors. Maybe I should suggest a dark color to him next time.

Although I had once asked him a question about what he did thta day that he liked and answered, I wasn't sure if he was answering me or just playing. Sometimes he'll count for me and show me certain things, but last night I had a conversation with my non-verbal 5 year old son for the first time. AWESOME!

What's even cooler is that he's starting to learn that if he knows how to spell a word, he can say anything with the Dynavox. The teacher was asking him a question about the calendar. He started to type and she went to correct him as he was not on the "months" page of the Dynavox so she was going to redirect him. Then she noticed he had typed a "N" so she paused. Tyler typed out the word November and then pushed the it so that it would speak "NOVEMBER"... we knew he can read many words but it may be word recogniztion vs being able to spell them correctly. So once he learns how to spell a core vocabulary, Tyler will be able to type, i.e. say, whatever he wants. YIPPEEEE... CANNOT WAIT to have more conversations with TYLER!

Also, I gotta say that I am so proud of Ben. He and Tyler have been somewhat fighting over the IPAD lately. We are considering getting an ITOUCH for Tyler ot use for potty training reinforcement that is only played with after potty which also could be used by Ben and therefore no fighting over IPAD. Anyway, it's a hard concept for Ben to understand why Tyler is still in a diaper and can have free reign with the IPAD and he has to earn the usage by not having any accidents all day. Ben typically wakes up early to play on the IPAD while we are getting ready for work and Ty is still sleeping. This morning I come downstairs, Steve is in the kitchen with the boys and Tyler had hopped up to play with the ipad when Ben stepped away for a minute but it was sitll Ben's turn. Usually Ben would start screaming and pulling at him or getting upset. Today, he was so patient and loving and just telling Ty it was still his turn and that Tyler could watch him if he liked, etc.

November 8, 2011

We had a stellar parent teacher conference for Ty last night. His teacher thinks he's either speed reading or scanning for content. They present him with a picture of some sort of activity and then he has to pick out one sentence out of three sentences that matches the picture. The teacher said he's doing it so quickily he cant be reading it all unless he's scanning for content because he's getting it right. The conference went very well, he's doing great. He read Goodnight Moon to his classmates using his dynavox. He told the gen ed teacher to turn back her clocks (last friday in advance to the day to turn them back) and even gave her the proper date to turn them back. He's starting to match music chords from his IPAD to the keyboard at school.

Today however I"m afraid Tylers getting sick. And there is a little girl in his classroom right now that has a stomach virus and as well all know, sensory wise, Ty takes a long time to recovery from stomach bugs. He's refusing to eat today and is drinking very little, very lethargic compared to his normal self. Fingers crossed he'll be ok tomorrow.

Here are the details of the study that both Tyler and Ben will be participating in on Tuesdays and Thursdays after school:


Purpose of the Study: The purpose of this research study is to gain an understanding of the effect of an integrated play group on social skill development in children with autism spectrum disorders (ASD). In addition, we hope to gain a better understanding of how attitudes toward and acceptance of persons with disabilities are impacted among peers.

Procedure: Should you decide to allow your child to participate, he or she will be involved in a play program for children with autism and their peers. The program involves a small group of 3-5 children who will meet two times per week for approximately 45 minutes over a period of 2 or 3 months. Play sessions will be held primarily during late afternoons to accommodate daycare and school schedules. We are following the guidelines established in a field manual designed by Pamela Wolfberg for Integrated Play Groups. The integrated play group model was designed to support children with ASD of varying ages and abilities in shared play experiences with their typical peers. The model uses natural settings, well-designed play spaces and specifically-selected play materials. Play sessions are organized with consistent schedules and routines that foster familiarity and predictability. Children on the autism spectrum are the novice players while peers are identified as the expert players, serving as role models and guides during the group process. The study is being conducted at the EMU Fletcher Building in Ypsilanti, which houses the Children’s Institute and the Autism Collaborative Center. The study has been approved by the EMU University Human Subjects Review Committee. Approximately 10 children will participate in this study.
Play sessions will be video recorded to evaluate the progression of each session and to note the engagement of the players. All videos and observation records will be secured in a locked cabinet in the investigator’s research lab at Eastern Michigan University. Videos will be reviewed only by the principal investigator or graduate students trained to evaluate play sessions according to a format developed for the integrated play group model. Videotapes will be destroyed when data collection and analysis for the study is completed, within a period of 3 years. All graduate students have completed coursework in research methods and the ethical treatment of human subjects in research at Eastern Michigan University. Graduate research assistants are instructed in the specific confidentiality and data handling procedures for this investigation.

As part of the program, the peers (expert players) are provided with information about the nature of autism spectrum disorders and taught ways to assist children with the condition. Open-ended questions will be used at the initiation and termination of the program to understand the expert players’ feelings Interviews will be done in small groups and last 30-40 minutes. We will ask all parents of the participants to complete a questionnaire about their play styles and preferred activities. The questionnaire should take about 20 minutes to complete.
Confidentiality: Names of participants will not be reported in any findings. Pseudonyms will be used in research reports and presentations at professional meetings to maintain the confidentiality of the participants. The consent form which includes your name and any other identifying information will be stored separately from the results in the principal investigator’s office in a locked cabinet. At no time will your name or the name of your child be associated with the results. All data gathered during the project will be kept in a locked cabinet in the investigator’s locked research lab.
Expected Risks: Children may feel uncomfortable as the program begins. All efforts will be made to assist participants in the transition into the program. Sometimes children with autism become upset and disruptive when they are frustrated. If this happens during the play sessions, there are several adults who will be able to help them calm down and keep them from harming themselves or nearby others. The play groups will include 3-4 adults working with the children who can immediately intervene with and support all of the children.
Expected Benefits: We anticipate that there will be positive effects on the social skills of the children with autism and that opportunities to interact with their peers will increase as all students become more familiar and comfortable with their abilities. In addition, we expect that peers will become more familiar with persons with autism and will feel more comfortable in interacting with them in more spontaneous ways. Research has shown that here are many benefits to the children with autism who develop better social skills and to their peers who are more sensitive to individuals who have learning and performance differences.