tag:blogger.com,1999:blog-41797649656960483302024-02-19T17:25:28.459-08:00My Journey with JackThe struggles and joys of raising my son Jack with Autism and Marfan Syndrome.Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-4179764965696048330.post-1540358447716377202012-12-20T15:00:00.001-08:002012-12-20T15:00:42.260-08:00SchoolJust a quick update! Jack has been adjusting to school really well for the most part. He got his very first report card last week, which consisted of 2's and 3's, on a scale of 1-4. Considering this his first year at school, and only one month at full days, I think that's pretty good!! His highest scores were in science, which I definitely want to keep on eye on. Reading seems to be more a little bit of a struggle for him, but I think it has more to do with testing a certain way (he really doesn't test like everyone else) than his ability to read and comprehend. The only rough spot we've hit is his dislike of getting out of bed some mornings. About once a week, he's too tired or doesn't want to go for some reason, and it turns into a major battle. We keep trying new things to motivate him, but they get old quickly. You know, Jack always says interesting things when he doesn't want to do something, so we hear a lot of, "I'm done with school now," "School is closed," "I'm 6, I don't have to go to school," and so on.<div>
<br /></div>
<div>
Sometimes Jack does so well I forget that I still have to think differently when talking with him, and then it hits me in a flash. Jack is the same as the rest of us, and he's different too. He's doing so well in school, I really hope that he can stay with his class as he gets older. Right now, my focus is teaching him as much as I can both educationally and socially, so that he gets everything he needs.</div>
Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-12836586303546199932012-09-23T18:49:00.000-07:002012-09-23T18:49:18.146-07:00PrayIt looks as though we are on the verge of losing Jack's intensive therapy; crazy doesn't even come close to how it's been working with the insurance company and county. Please pray for us so that we make good decisions for Jack this week, as this may be his last week. I've been trying to think of ways to make this transition easy for him, but I know it will be hard for him so please pray for him too. Thank you. =)Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-57522468191430208552012-09-08T05:07:00.000-07:002012-09-08T05:07:10.512-07:00Jack's First Day of School<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwjw0FJMu9eoJBGrzEjhVZagf5WXE6LrTt7u3DYnuhDZoKFVJcYt9OekxUxQZ49-3ac34DZLhAqQYPdyaRM9qLkXu5XURHKwHIelLIfEhkimdi0LY_8NZOmd7z5cagbZylPlMIv9JvXeIX/s1600/2012-09-04_09-09-06_244+%25281%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwjw0FJMu9eoJBGrzEjhVZagf5WXE6LrTt7u3DYnuhDZoKFVJcYt9OekxUxQZ49-3ac34DZLhAqQYPdyaRM9qLkXu5XURHKwHIelLIfEhkimdi0LY_8NZOmd7z5cagbZylPlMIv9JvXeIX/s320/2012-09-04_09-09-06_244+%25281%2529.jpg" width="238" /></a></div>
Jack's first day of school was AMAZING!! There were days I really struggled with not having put him in some form of school, but this day provided a lot of validation that we made good choices for Jack. He is in a regular kindergarten class, which also has some special ed help that floats in and out of class. He loves it!! People kept asking me if I was going to cry since he is leaving us for the first time. I really didn't. It's been six years at home, and that's all I'm saying about that! What did make me emotional was watching him interact with all of the kids, put himself forward in learning new songs with hand motions (not something he would have done in the past), and answer all of the teacher's questions while sitting on the carpet with all of the other kids. I cannot say enough how far he has come. School would not have gone this well last year if we had tried to force him into it. That's what makes me emotional - watching Jack blossom. Thinking about how hard it was for him to get there. Remembering what a blessing that therapy was.<br />
<br />
My favorite memory: Jack running up to me and giving me a hug because he had seen all of the other kids say good-bye to their parents. "I want to give you a hug. Good-bye, mommy!" He ran right back to his class and went to go eat his favorite snack.<br />
<br />
What I think Jack loves the most: His very own bus-ride!!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrLp5gDJ2yJB9A3CCYNVMFJw7M4G3hy-TUHHHigeKdz38bzCZ-yyay52Ld48fADqOZRGWxOYRN7sS7G61FXzafEba_HLy-hvikoPElaqpKs8Zs0hQRJkpTmc0W0TFUwgVHToKSujIEzKNl/s1600/2012-09-04_08-22-02_351+(1).jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrLp5gDJ2yJB9A3CCYNVMFJw7M4G3hy-TUHHHigeKdz38bzCZ-yyay52Ld48fADqOZRGWxOYRN7sS7G61FXzafEba_HLy-hvikoPElaqpKs8Zs0hQRJkpTmc0W0TFUwgVHToKSujIEzKNl/s320/2012-09-04_08-22-02_351+(1).jpg" width="240" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGI6tmP0GMMSWS2vTHgX4eYcuW3KDkBAFZ5592OCKgg8JdAt8zYH_3yrkkXXa9rfXTvih6nRJiDbco7RkPWnBLcWH4XdyjTrhwUcuesXTeUX7IlSlsoEd8VHkuT94DX9TbDlG9YuMBbh_C/s1600/2012-09-04_07-37-17_370.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGI6tmP0GMMSWS2vTHgX4eYcuW3KDkBAFZ5592OCKgg8JdAt8zYH_3yrkkXXa9rfXTvih6nRJiDbco7RkPWnBLcWH4XdyjTrhwUcuesXTeUX7IlSlsoEd8VHkuT94DX9TbDlG9YuMBbh_C/s320/2012-09-04_07-37-17_370.jpg" width="320" /></a>Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com1tag:blogger.com,1999:blog-4179764965696048330.post-86564880735837072192012-07-01T13:43:00.001-07:002012-07-01T13:57:31.342-07:00Kindergarten After many meetings, and a lot of prayer, we were able to enroll Jack into a collaborative Kindergarten program in the Green Bay school district. Only one school in the district runs this program, but they referred to it as their 'cadillac' program. It's designed so that two kindergarten classrooms are connected by a third room in between. The classrooms are staffed by kindergarten teachers and special-ed aides, and the middle room is staffed by a full-time early childhood teacher. They are regular education classrooms, but each room has 5-6 kids similar to Jack, who can get the attention they need but still be able to learn at the appropriate age level. I.AM.SUPER.SUPER.SUPER.EXCITED!!! This sounds perfect for Jack! They even agreed to start him at 2 1/2 hours for the first six weeks, and then slowly increase his hours over the school year -and the additional time is completely dependent on how he is handling everything. There is something very settling about this for me, too. It has been an entire year that Tony and I have been wondering and waiting to see how school was going to play out for Jack. On one hand, he doesn't need to be stuck back in a special-ed classroom. He wouldn't thrive that way. On the flip-side, he struggles in classroom size settings on his own. I had never heard of this program, but as soon as it was mentioned to me I knew it was a good fit for Jack. It sounds very discreet to me, which I think is important. What I mean is: the aides in the classrooms help all of the kids, and the middle room is functional for both classrooms. Basically, the kindergarten classrooms are self-contained; they have everything they need in this three room system. There will be no calling Jack out of class, he will not have an aide with him, and he won't have to feel different in any way -but he will still get the extra attention he needs! I really believe this is a gift from God to Jack, and to the rest of our family as well. He has worked so hard, and changed so much in the last year, and I'm so excited for him!!<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWCEeeOGC5niJI7GQ-KMTmf859HjDAn6vRnkECEGuMEjU9JCI3nZwzZD_ACdFTMZSrwtNVQDSoGCHCY-rRcva4vIK5dfNpRb4SK3HTuNsqR08kL627O3xDQoExoT1qmkUPfN1v5N5xSeVc/s1600/2012-07-01_15-12-41_982.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWCEeeOGC5niJI7GQ-KMTmf859HjDAn6vRnkECEGuMEjU9JCI3nZwzZD_ACdFTMZSrwtNVQDSoGCHCY-rRcva4vIK5dfNpRb4SK3HTuNsqR08kL627O3xDQoExoT1qmkUPfN1v5N5xSeVc/s320/2012-07-01_15-12-41_982.jpg" width="320" /></a></div>Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-41796961158117183412012-06-10T12:41:00.000-07:002012-06-10T12:41:02.328-07:00Big WeekThis week is a big week for Jack! We have three appointments with our school district this week, two are evaluations and one is an IEP. Please pray for us and for Jack, that we will have a productive meeting and that Jack will be placed where he needs to be. My impression from speaking with them is that they have one option, which Jack is not ready for yet.<div>
<br /></div>
<div>
Jack is still growing like crazy!! Every few weeks he seems to turn a new corner, so to speak. What's been awesome lately is that he has started to initiate affection. He has always loved being hugged and kissed, but only in the last week or two has he ever initiated it. Every night now, he gives me a hug and a kiss on the cheek, something I'm definitely enjoying!! Sometimes these changes are hard to define and quantify, but a change like that is a sign to me that he has been freed up a lot. Thank you all for being supportive, I hope that you can all see how much Jack has grown soon!</div>Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-25726508168992168162012-05-20T13:09:00.000-07:002012-05-20T13:09:54.400-07:00Choices!!We've had quite the interesting few weeks with Jack. We are continuing with his habit "potty" training, but had to revamp it a little bit. The changes seem to be working out well, thankfully! Now, whenever he fulfills his requirements, he gets to pick a reward from a special box. There are cards in the box with different rewards on them, such as a cup of soda, outside time, Wii time, etc. My impression is that he responds well to it because he doesn't know what he's going to get each time, and it's always different! Overall, he is struggling with it and progressing at the same time. I can tell that he still wants to fight it, and we've had a few rather telling moments that speak to that. However, he's made progress too, and is more aware of what's going on. He is definitely maturing, and with that I can sense that he is opening up to the idea of change! <div>
<br /></div>
<div>
Our big struggle right now is finding the right school for him this fall. We opted out of 4K last year, and started the intensive therapy instead -but it's definitely time for him to start school. Both his pediatrician and behavioral doctor suggested that he would be better off in 4K this fall, instead of kindergarten. Tony and I can sense that as parents too, but we're having a hard time making that work. The public school does not want to enroll a 5 year old in the 4K program, and the school that will enroll him in one, is a private school and requires complete potty training before they will take him. What a bind!! Please pray for us, that we make a good choice for him, and that he relaxes about potty training too. Thank you so much for all of your support!!</div>
<div>
<br /></div>
<div>
Meanwhile, Jack has been earning military stickers to put up in the bathroom. He created a battle scene with them a couple of days ago, and can stand there and talk about all of the vehicles and what they're doing. It's fantastic to listen to him be creative, what a change!!</div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT9QiQcetDOGhUJhCxM8Q2LByMw2JB8CtlQWqUXDPf94IPD4sUmy2OaHkPmcLtJCfym7aKVYt-J6uCgEtwtM_Bv5wCs3cKnwVlqZnuboEIfSFv3681iP6_AXolUDDVEaXc0Cwjvm3SSN8D/s1600/2012-05-17_14-43-29_630.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT9QiQcetDOGhUJhCxM8Q2LByMw2JB8CtlQWqUXDPf94IPD4sUmy2OaHkPmcLtJCfym7aKVYt-J6uCgEtwtM_Bv5wCs3cKnwVlqZnuboEIfSFv3681iP6_AXolUDDVEaXc0Cwjvm3SSN8D/s320/2012-05-17_14-43-29_630.jpg" width="320" /></a></div>
<div>
<br /></div>Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-60983763077049352872012-04-22T13:07:00.001-07:002012-04-22T13:07:49.813-07:00Updates Pt. 2It's been awhile ~ I know!! We've had a lot of changes take place lately - mostly good ones, thankfully! We finally transitioned through all of the therapists that needed to leave and all of the new ones filling those empty spots. Jack lost 3 out of 4 line therapists from his original team, which was extremely frustrating at the time, but has turned out really well. His new therapists are FANTASTIC!! They love him, connect to him, and are just what he needed. One of them works with older people affected by autism, and has seen what this kind of early intervention can do for people; for her, this is serious, life-altering work. Another new one has a pet pig, which Jack loves to pieces. He even works for the reward of watching videos of it from the therapist's phone. There is even talk of making videos with the pig to use for potty-training - which is something that Jack will love and connect to.<br />
<div>
<br /></div>
<div>
Speaking of potty training ~</div>
<div>
We finally started!! The clinic refers to it as 'habit training' and I believe I've seen it called 'interval training'. It starts out very simple, with Jack just having to sit for 10 seconds once each shift. Every week the requirements change, and the rewards do as well. The first week he earned paint for the bathroom, and the second he earned wall stickers. I took him to Sherwin-Williams to pick out the paint, and to show him some pictures of themes that he could pick from. He had been talking about fish on the walls for weeks, so that's what I thought he'd pick. But no. He went for Army tanks and planes. Truthfully, he needed to pick a theme that is exciting for him, so this is good. But it's definitely not one I'd ever pictured! Thankfully, the picture had blue/gray paint in the background and not army green!! </div>
<div>
<br /></div>
<div>
Forever grateful to good friends, two of ours helped us paint the room already. It's all set for Jack to earn his tanks, planes, and helicopters to put on the walls. If you think of us, pray for us. This is a huge undertaking for our family. The truth is: I get extremely frustrated because I wasn't able to do this myself. Our senior therapist says things like, "I've potty trained so many kids, it's crazy!" And then I wonder who else is out there that had a similar experience. I don't know of any myself! But Jack is different. He's a good different, but he's different. He needs different things from me than Evan does, and that's ok.</div>
<div>
<br /></div>
<div>
On a positive note: he's grown like crazy in the last couple of months. His conversational skills have taken off; his ability to express himself has changed so much that's it hard to remember a time when he wasn't able to do it; he's learned how to get attention appropriately; he even wants to watch tv/computer less - which is an activity that could keep him amused for hours and hours. Now he wants to know what we're going to be doing all the time. It's been amazing to watch him change and grow, and I'm super-excited for what's in store for him yet this year!</div>
<div>
<br /></div>Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-34867932514863893492012-03-04T13:47:00.000-08:002012-03-04T13:47:05.463-08:00UpdatesTuesday was an AMAZING day!! My dad and I took Jack to the cardiologist for his echo cardiogram under the assumption that he was going to start on medication soon (beta blockers and blood pressure meds). Last year, when he had the same test done, the cardiologist almost prescribed it for him but then decided that he was too young, and too afraid of the doctor's office for it to be effective. The good news: He does NOT need them this year!! His aortic root is still mildly dilated, but the percentages haven't changed since last year at all. His height and weight are around the 75th percentile and his aortic root length is at the 99th percentile. If it stretches anymore, he will still need it; however, if it stays at the 99 mark as he grows then he won't. So he still needs to be tested every year, and possibly every six months when he's a teenager, but this is such great news! It also means the cardiologist has a history and baseline, instead of just a snapshot. I was so surprised and relieved that it has taken me these last 5 days to decompress and talk about it. It's the first time in over 2 years that I can actually picture Jack as a healthy, active kid.<br />
<br />
The other awesome thing that happened Tuesday was Jack's handling of the echo. He was a little SAINT! He crawled up on the table himself, talked with the technician about taking pictures of his heart, and then just LAID THERE. ON THE TABLE. FOR TWENTY MINUTES. It was AMAZING!! In case you're not aware, the first time Jack had an echo done, we had to sedate him. It was a horrible experience.. which ended with the doctor wrapping Jack in a blanket and sticking the IV in his foot. He wriggled out of the first 3 tries with myself and 2-3 nurses. He's very limber (the Marfan's) and could get the IV out even with three people holding him. I've never heard him scream like that, and I hope I never do again. The way Jack handled his echo Tuesday is miraculous. I didn't even have to use the treats and toys I had brought with me, he just watched cartoons the whole time. Later he said things like, "Mom. They took a picture of my heart. Inside me here." And, "I laid really still on the bed, and mommy is really proud of me." This is so great for Jack, he's come such a long way!<br />
<br />
Thank you so much for praying with us!!Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com1tag:blogger.com,1999:blog-4179764965696048330.post-33458217150139296062012-02-19T14:25:00.000-08:002012-02-19T14:25:54.906-08:00An Ode to EvanOk, so it's not an actual ode. Apparently, there are very strict guidelines for those. But the thought counts, right? Sometimes I wonder if Evan gets lost in all of the time we spend taking care of Jack. I hope that's not true, but I think he needs some recognition.<br />
<br />
<br />
<i>I love listening to Evan wake up in the morning. He comments on everything he does. "I get up. I go see Mommy. Play with dog. Drink milk." And so on. </i><br />
<i><br />
</i><br />
<i>Evan has the best smile EVER!! And he has the laugh to go with it!</i><br />
<i><br />
</i><br />
<i>I love the way he curls up with his blanket at night. He rubs it on his face and knows how to wrap himself in it. He's like a little bug, all cocooned in his blanket and pillow.</i><br />
<i><br />
</i><br />
<i>Evan is turning into a pack-rat. He stores toys in his bed at night, and he taught himself how to carry all of the toys he wants to take out with him. It's hysterical.</i><br />
<i><br />
</i><br />
<i>I love how he comes and sits on my lap. He backs himself up and plants himself right on me. We both like this arrangement. Truly.</i><br />
<i><br />
</i><br />
<i>Evan has the best eyes ever. When he looks at me, I melt.</i><br />
<i><br />
</i><br />
<i>I love watching him befriend other children. He always</i><i> lights up when he sees kids his age, and I've even seen him put some at ease just by being friendly.</i><br />
<i><br />
</i><br />
<i>Evan is good little brother, staying downstairs with me when Jack is 'playing' upstairs with his 'friends'. </i><br />
<i><br />
</i><br />
<i>He is a beautiful child, full of life and laughter. I thank God for him.</i><br />
<br />
<br />
<br />
<a href="http://en.wikipedia.org/wiki/Ode">http://en.wikipedia.org/wiki/Ode</a>Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-26712014976239141952012-02-05T15:41:00.000-08:002012-02-05T15:41:34.214-08:00Progress and Little Debbie StockWe have progress!! I took Jack to the railroad museum last week, and it was the first time I really saw all of his therapy come together for him. He walked up to another boy and said, "I like trains! Do you like trains? This one over here, this is my favorite train. Do you have a favorite train?" He spent the whole hour with this boy!! Jack even talked with the boy's mom, answering questions that he's always struggled with in the past. It was amazing, and totally worth all of the things we've been struggling with at home and in therapy. He even invited this boy to get ice cream with him afterwards; he couldn't come but still,<i> Jack made a friend all on his own</i>!!<br />
<br />
<br />
<br />
Looking for something to invest your hard-earned dollars in? Go for Little Debbie, or Hostess, since we will be stocking up on it in our home. I was so tired of all the tantrums that I told Jack he could have a Little Debbie Valentines Cake if he went through a shift without a fit. He <i>REALLY LIKES</i> those cakes, because he hasn't thrown a fit since! I hope this is a turning point for him, because with his compliance comes potty training!! I can't wait!! <br />
<br />
<br />
<a href="http://littledebbie.com/products/ValentineVanilla.asp">http://littledebbie.com/products/ValentineVanilla.asp</a>Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-81477030570816485752012-01-29T15:47:00.000-08:002012-01-29T15:47:04.595-08:00The Doctor, Part TwoA lot has happened in the last few weeks. We added a new therapist, who seems to be working out well. We also had another visit with <b style="color: #e06666; font-style: italic;">THE DOCTOR, </b>which was great. Sadly, we are losing a <i>third </i>therapist! Already!! This one is harder for me to swallow because she is very, very good with Jack. She reads him the best out of all of them, aside from Michelle. Apparently Jack's original team was so good that the clinic is hiring them to fill vacant senior therapist positions. I actually started crying when I was told about it! This therapist is at our house 4-5 days a week, and more importantly, Jack really likes her! He told me last week that he has a lot of fun with her, which he rarely says about anyone! Thankfully, the clinic is aware that we have just lost two people so they are letting her stay on until she can train her replacement, unlike the other two. Still, it's heartbreaking to watch Jack become attached to these people and then watch them leave. I'm really hoping we get some good replacements that will not be leaving quite as quickly.<br />
<br />
<b style="color: #e06666; font-style: italic;">THE DOCTOR - </b>As usual, he had a lot of really good ideas to help Jack where he struggles the most. We're going to put off potty training until he is more comfortable with all of his therapists and is more compliant. Michelle made a comment about making the bathroom a really fun place for him to be. I agreed but didn't completely understand what she was getting at. After talking with someone else with an autistic child and hearing what they did to their bathroom, it finally became clear: we're going to have to turn our bathroom into a train room. We need paint, of course, and some trains on the wall, but I can see that we need a whole lot more than that too. One of my friends suggested finding a Stop and Go railroad crossing that he can turn on when he uses the bathroom. Finally, things connected. Not just a fun place, a super-awesome-lit up-fantastically fun place. I have a good feeling that will work for Jack. He IS going to potty-train!! I can feel it!! It may require a completely different idea that what I have ever pictured, but it will work eventually!<br />
<br />
I said something this week that I'm not proud of. I was conversing with someone about Jack and his tantrums (which at times are very, very difficult to listen to), when I finally got to the heart of the matter. "I don't want him to be like that," I said. I was referring to the tantrums, which consist of throwing his table and chairs on the floor and throwing his toys and books over the stairs. Each time something lands on the floor, I cringe and fear that this a long term issue for him. Partly, I just thought it wouldn't be me that had such a disruptive child. I also don't want his tantrums to interfere with school, friends, and development ~ he has a lot to give inside. I also tend to feel defeated as a parent every time I hear something hit the floor or him screaming the always popular, "No! I don't want that! I don't want to!!" Yeah, "I don't want him to be like that," doesn't really help him or me. Later that day, I realized something important: I'd lost the joy of being Jack's parent. I was so worried about helping him and overwhelmed by what that requires that I had forgotten what an absolutely fantastic child Jack is. He is strong-willed and controlling, yes. But he can utilize those elements of his personality as he gets older and grows into himself, so to speak. He is also caring, fun, and intelligent. He has a great sense of humor and the laugh to go with it. I'm so glad that he was given to me. Hopefully the next time he tantrums, I will remember these things and not get so upset.<br />
<br />
So, any ideas for an awesome train-themed bathroom? Let me know!!<br />
<br />
<a href="http://mariesmanor.fateback.com/BOYS/ChooChooTrain_Bedroom.html">http://mariesmanor.fateback.com/BOYS/ChooChooTrain_Bedroom.html</a>Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-87703350664099079502012-01-08T13:06:00.000-08:002012-01-08T13:06:31.793-08:00ChurchReasons Why I Love My Church:<br />
<br />
Every Sunday for at least two months, someone has commented on their experience with Jack and how well he is doing.<br />
<br />
Jack has a cardiology appointment in February, and I <i>know </i>from past experience that people will pray for us and contact us to see how everything went.<br />
<br />
People give us guidance and support when we feel overwhelmed, don't understand what's happening, or get frustrated.<br />
<br />
People are real. They have their own struggles, which they often share, and don't pretend as though they have everything figured out.<br />
<br />
I do not feel alone when I go to church. <i> </i><br />
<br />
<i>God speaks to me. </i><br />
<br />
Thank you, God, for providing such a wonderful church family!!Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-21642744520707129142012-01-05T19:25:00.000-08:002012-01-05T19:25:48.863-08:00A Bad DayWe'd been having a GREAT week. I have watched Jack change and grow in so many ways lately. For example, last Friday I took him to Pizza Hut for lunch (since I missed the feeding-him-on-time part of parenting). He rarely says what he wants to eat, so when he asked for pizza, I said, "Sure! Ok!" We sat down, the waitress came to take our order and Jack stated, "I want Chocolate Milk. And breadsticks. And a big pizza!" This is the FIRST TIME he has ever ordered something for himself. I almost cried! Another great example is from last night. He was playing with an older kid at church, and they eventually came and sat down by me after service. Jack had a conversation with this kid (whom we're going to call "Bob," as it's my favorite fake name right now,) and used things we've been doing in therapy. It's an amazing thing to see that work pay off. This is how the conversation went:<br />
Bob said, "I'm Bob!" <br />
Jack pointed to himself and said, "I'm Jack. I'm five!" (This is awesome because he is FINALLY admitting his correct age!! He was just 'telling' a therapist earlier in the week that he was four.) <br />
Bob said, "I'm in fifth grade." <br />
Jack said, "Oh yeah. Fifth grade. I'm five! I like trains."<br />
<br />
Really, for someone who DOES.NOT.EVER. carry on conversations with people, this was great!! I know in my heart that Jack enjoys being around people, and that once he has a better grasp of communication he will make many friends.<br />
<br />
The Bad Day: I'm still not sure what set him off, but he had a horrible morning. I heard him throwing a fit from downstairs but wasn't too worried about it since it's happened before and the therapists know how to handle it. This time wasn't like those times. I got a text from the therapist saying, 'Is there anything important on your PC?" This is our only <i>good </i>PC, mind you. I asked if she wanted help, and she told me that she couldn't get him to calm down, so yes. I walked upstairs and felt my stomach sink. His worktable and chairs had been pushed over, the computer chairs were laying sideways on the floor, and his toys had been thrown all over the room. Jack was laying on the floor right next to his therapist, just screaming his heart out. It was an ugly site, one I hope I don't see again anytime soon. He calmed down within five to ten minutes, and we walked through the room and cleaned everything up. One problem though; the computer wouldn't start. Apparently he pushed it over 2-3 times, and had pulled some of the wires out. We tried to put everything together, and finally got it started but it wouldn't connect with the monitor. Thankfully, Tony knows his computers well, since he knew right away what was wrong with it. It is now functioning once again, but needs a new place to live.<br />
For me, this is so frustrating. Jack is NOT a naughty kid. He is strong-willed, for sure ~ but he would not have gotten away with that in front of his mama! I've been told by each therapist multiple times that he almost always throws his tantrums during 'play-time.' He's "eager" to do his work, and he's really good at it. Unfortunately, he's "very controlling" over play and this is almost always when he erupts. I don't understand that yet, but I hope that it will become clear soon. Please pray for us; for grace and understanding.<br />
<br />
The rest of the day involved Jack saying, "Mom, you're so cute!" I<i> think </i>this is his way of saying he likes me. Hugs always accompanied it. No doubt he was trying to get back on my good side. At least it was entertaining.Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-23728553071133454042011-12-28T13:41:00.000-08:002011-12-28T13:41:01.911-08:00December CrazinessDecember is a HUGE month for our family. It starts with Jack's birthday, and encompasses Christmas, New Years, and our anniversary. Tony's birthday isn't far behind in early January. Insanity (the good kind) reigns in our house for a straight month!! <div><br />
</div><div>Jack's Birthday ~ It turned out great!! Friends, gifts, and a totally awesome cake definitely made his 5th birthday memorable. The only hiccup along the way was teaching Jack his new age. He kept saying, "I'm not 5, I'm number 4!" He finally started saying 5 at the end his birthday, but the day after it was, "My birthday is done. I'm not 5 anymore. I'm 4!" From what I can tell, he is finally understanding that he is 5 now, but I occasionally hear him argue with his therapists about his age. If you see him around, don't be afraid to ask him how old he is!</div><div><br />
</div><div>Christmas ~ As far as Jack is concerned, we did very well this season. Multiple family members remarked on how much less inhibited he is this year as compared to the last few years' worth of family gatherings. It's so nice to look back and see change and progress. The only thing I see that's different, that I <i>don't</i> like, is that he's starting to use verbal "stims" more, as in he randomly yells out sounds that aren't words. They usually involve different pitches and apparently it's something that kids with Autism commonly do. Jack hasn't ever done that much, but I wonder if it's his new way of handling people, especially large groups like a family gathering. That's when I noticed it the most over the Christmas season. A few of the therapists noticed it too, and I'm not sure how they handle that yet. I tried teaching him to say, "I'm excited!" or something similar but I think it's going to take more than that.</div><div> </div><div>Therapy ~ Jack is definitely progressing each month, but this month we had to add some limits to his therapy. I used to walk him upstairs for his first hour, but our senior therapist thought he was too dependent on that. He REALLY struggles the first hour of the day, and when we tried to get him upstairs by himself he threw terrible fits. I just want to say ~ listening to your child throw huge fits, which involve hitting/screaming at other people, is horrible. If you know any other moms dealing with this, make sure you give them a hug and tell them you support them! This is one of my biggest struggles with his therapy: handing the reigns over to someone else whom Jack will likely reveal his evil side to. It's good for him, but it's not pretty. We also learned today that one of his line therapists had to resign (his favorite). I'm not sure how things will play out yet, but I'm guessing it means we'll have someone new in our house and that Jack will NOT like it. Pray for us if you think of us!! On the happier side of therapy, we added a few new programs which I LOVE. One is 'pre-school games' and right now he's in the middle of Hide and Seek, I Spy, and Ring Around the Rosie. Another fun one is, 'I See.' This is designed to teach sentence structure and it's fun to listen to. We also added 'Peer Play' and have had some of his friends over during therapy hours. Its been GREAT to branch out and do some fun things.</div><div><br />
</div><div>I hope everyone had a Merry Christmas!! =)</div><div><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggvzseAdimnlD-f_OWrSUkQmvRuf8PTElB3n2Ho7Vz3MSNa7veX-QuoweieIKObt7B0p2sFqr9eCVgLe4kP9CvEaQQKQbS8ztPGKerGukr8-Snfa65hpAbzNQzGKrVcVrIA8AEZYoSVUTN/s1600/2011-12-10_18-45-00_258.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggvzseAdimnlD-f_OWrSUkQmvRuf8PTElB3n2Ho7Vz3MSNa7veX-QuoweieIKObt7B0p2sFqr9eCVgLe4kP9CvEaQQKQbS8ztPGKerGukr8-Snfa65hpAbzNQzGKrVcVrIA8AEZYoSVUTN/s320/2011-12-10_18-45-00_258.jpg" width="320" /></a></div><div><br />
</div><div><br />
</div><div><br />
</div>Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-90195906834396333362011-12-04T14:27:00.000-08:002011-12-04T16:16:07.642-08:00THE DOCTOREvery two months Jack has a meeting with four professionals from the clinic, including the psychologist that runs it. After having a two-week delay, we finally went to our first progress review last week. The psychologist (who I'm now going to refer to as <span class="Apple-style-span" style="color: #ea9999;"><i><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;">THE DOCTOR</span></i>)</span> observed Jack for almost an hour and then talked with me and our senior therapist and supervisor about changes he thought we could make to Jack's therapy. One of the truly wonderful things to hear him say was, "I think Jack is talking really, really well. Let's move up his language programs to something more difficult." We waited for over a year and half for Jack to start talking, and by waited I mean stressed, prayed, and bit our fingernails... always hoping that he would start expressing himself. <i><span class="Apple-style-span" style="color: #ea9999; font-family: 'Courier New', Courier, monospace;">THE DOCTOR</span><span class="Apple-style-span" style="color: #cc0000; font-family: 'Courier New', Courier, monospace;"> </span></i>also mentioned the magical words, <i>potty training</i>. They call it habit training because its interval based, and they create bathroom habits before they actually start potty training. Apparently, it only takes 2-3 months on average to potty train their clients. CAN. NOT. WAIT. I will do anything, including deed my house to anyone who accomplishes this seemingly insurmountable task. Ok, maybe not my house.. but possibly our car, bikes, and my parents SUV. Thank God for psychologists, therapists, and autism research!! And for Tony's new job with awesome health insurance that pays for intensive autism therapy.<br />
<br />
Favorite Mildly Autistic Jack Moment last week: While in the Chicago area, we took Jack for a ride on a commuter train for 20 minutes. Before we got on the train, he got it stuck in his mind (and would NOT let it go) that we were going on a freight train. He started crying, and yelling, "No train ride! Stay in the car! No train ride for Jack!" Knowing how much Jack loves trains, I was confused and frustrated (we prepped him for this all week). Finally, I remembered that he and Grandpa had walked up to a train station as a freight train was passing by. I turned to Jack and said, "Jack. We're going on a passenger train. Do you want to go on a passenger train?" In a very quiet voice he says, "Oh yeah. Yes, I do. I want to go on a passenger train." Instantly, he was fine. Happy, even. So, the four of us enjoyed our ride through the suburbs - complete with more trains passing by, train gates (for those of you who know Evan, this is important), train stations, lots of cool buildings, and a conductor who only charged us the price of one ticket.Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-68481556969118565282011-11-23T07:50:00.000-08:002011-11-23T07:50:57.054-08:00Jack's Roller-Coaster RideI was originally going to write this Monday night, but I'm glad I didn't. Mondays are long days, with Jack in therapy from 8-5. He gets 15 minute breaks for every hour of therapy but it's still a very, very long day. He spent it on a roller-coaster, up and down all day with the low points consisting of hitting his therapists, throwing his chair, and pushing over his table. For those of you that are close to Jack, you know this is NOT typical behavior for him. Still, I spent most of the day in tears. And I wondered.... <br />
"Who IS Jack?" <br />
"How did we get here?"<br />
"What did I do wrong?" <br />
"How do I help him?" <br />
"What happened to my happy, chirpy little Jack?"<br />
"What does this mean for Jack's future?"<br />
I think I had a crying hangover. Being an alcoholic amateur, I have nothing to compare it to - but my face felt like it was going to fall off, I had a headache, and my eyes burned all day. Thankfully, he is in capable hands and the day did not end badly. Later, I took Jack for a ride in which he told me he "had a hard day." TO SAY THE LEAST!!! While riding around, he told me that he lives in Green Bay, he's 4, he's good, and that Green Bay has lots and lots of cars, a blue bus, and an orange truck. At least he was learning something in between all the fits!!<br />
<br />
Tuesday was definitely a new day. He had therapists with him from 8-3:30 and he cooperated, played and learned like he usually does. When I came home he said, "You're so cute, Mommy." I think that's his way of saying, 'I like you.' I don't usually see much of what he does during the day, but I was able to watch a therapist teach him something new today. It was a good reminder that although Monday was exceptionally difficult, this process is worth whatever trouble we go through. Someone once asked me, "What is God's vision for Jack?" Truthfully, I'm not sure yet ~ but sometimes it's good to remember that God <i>has</i> <i>a plan for Jack. </i><br />
<i><br />
</i><br />
Meanwhile, I think I'm going to buy this book with my Christmas money. <a href="http://www.amazon.com/Different-Adventures-Free-Range-Aspergian-Aspergians/dp/0307884813/ref=sr_1_1?ie=UTF8&qid=1322061513&sr=8-1">http://www.amazon.com/Different-Adventures-Free-Range-Aspergian-Aspergians/dp/0307884813/ref=sr_1_1?ie=UTF8&qid=1322061513&sr=8-1</a> The train on the cover seems symbolic of Jack's personality. I love it.Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com0tag:blogger.com,1999:blog-4179764965696048330.post-54746622219667069662011-11-21T06:38:00.000-08:002011-11-21T06:38:16.144-08:00The Good, the Bad, and the UglyThe Ugly: We had a team meeting on Tuesday that consisted of three therapists and myself discussing Jack's behavior during some of his sessions. He is very controlling of play, often (but not always) throwing fits whenever people don't play with toys the way he expects them to. Otherwise he is very compliant, and burning through some of his programs faster than they are used to. It's good and hard to hear at the same time, because I didn't realize he was that controlling over play, but it does make sense looking back and realizing why he doesn't always cooperate with other kids. Thankfully, they are used to it and have ways of teaching kids how to play with others. <br />
<br />
The Bad: No matter what people say, or how many kids I see throwing tantrums, it is always difficult to listen to Jack get upset with other people. There are moments when Jack just absolutely does not want to do whatever is being asked of him, and he lets everyone in hearing distance know. I know the therapists are used to it and know how to handle it, but it's hard to listen and hard to sit still. It's even harder when it's not the usual 'I'm not getting what I want' tantrum - it's because someone moved the train the 'wrong way' around the train table.<br />
<br />
The Good: There's really a lot of good! Jack is much more expressive now than even 6 weeks ago. It is <i>awesome</i> to hear him tell us what he wants or even what he's thinking about - I did not realize how much he wasn't saying. I also had the following conversation with him today. If you know Jack, you can picture how funny this was:<br />
<br />
"Jack, what's your favorite color?"<br />
"Mmmmm, orange I think."<br />
"Oh, you like orange a lot?"<br />
"No, I like orange one!"<br />
<br />
He has NEVER been able to tell anyone his favorite color, or favorite anything. Yesterday, he told one of the therapists his favorite color, and I wanted to see if he would say the same thing again. It was so cool to hear!!<br />
<br />
I read today that there are people diagnosed with Autism that eventually change so much that they no longer meet the criteria for a diagnoses after 2-3 years of therapy. I hope this is possible for Jack, he has so much to give.Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com2tag:blogger.com,1999:blog-4179764965696048330.post-64082941364212948872011-11-13T13:18:00.001-08:002011-11-15T06:14:48.628-08:00What makes Jack, JackJack is unique.<br />
<br />
I prefer to think of him as normal and slightly autistic. <i>Of course I know that he thinks differently and that he has struggles most kids don't</i>. Sometimes those worries get the best of me. Sometimes I wonder if I have what it takes as the parent of a child with a diagnosis. Other times I wonder what he'll be like as he matures into an adult, and what that may involve for us as parents. But you know what, at the end of the day I wouldn't change a thing about him. He's funny, smart, energetic, and kind. He has a great laugh and the sense of humor to go with it. Maybe he is different, but I love him the way he is!<br />
<br />
Yesterday, he randomly told me he loved me - something he rarely does. There's nothing like hearing, "I love you, mom!!"Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com1tag:blogger.com,1999:blog-4179764965696048330.post-39327210510481699072011-11-09T07:04:00.000-08:002011-11-09T07:04:38.105-08:00Team Meeting TuesdayEvery Tuesday morning at 9AM, Jacks entire team of therapists comes to our home and discusses the past week and anything new they may want to add. I both love these meetings and stress out about them. It's fascinating and comforting that there is a team of people that care about our son's development. It's also hard to hear them all talk about Jack's struggles for an hour. <br />
<br />
Normally he joins us and plays with different people while we talk, but yesterday he was throwing a fit over something a therapist asked him to do. So for almost an hour, the entire team of therapists, and myself, ignored him (they call this extinction) while he ran back and forth upstairs, made random loud noises, and just did whatever he could think of in an effort to gain our attention. Finally, while he was very slowly making his way downstairs, Evan crawled up to him and gave him a toy. The joke was, "well I guess Evan just doesn't quite understand how extinction is supposed to work yet." When he finally made it down, he crawled on my lap and said, "Mommy, you're so cute!!" LOL<br />
<br />
Results of the meeting: He is already finishing up some of his initial programs so they added some new ones. They showed me a flow chart yesterday of the entire program of therapy, which can take 3+ years to work through. It's broken into 6 phases, and they said Jack already blew through the first one and is working in phases 2 and 3 which is where he will stay for a little while. Not bad!!Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com2tag:blogger.com,1999:blog-4179764965696048330.post-7610110441379085482011-11-06T14:37:00.000-08:002011-11-06T14:37:53.069-08:00Struggles and AccomplishmentsToday is November 6th. It has been exactly 23 months of taking Jack to various doctors, specialists and evaluations ~ a very long struggle for our young family. Whenever I reflect on this time period, I am always left wondering... what happened to my happy, healthy little baby? He was so perfect, laughing and smiling all the time. His development was right on track, and I was so thankful to have a healthy baby. By the time he was two people were starting to make comments about his lack of development, including his doctor. But I was so convinced that Jack was fine, I didn't listen. Then our pediatrician wanted to have him tested for Marfan Syndrome - a genetic disorder with a heart condition. After a year and a half of testing, a specialist confirmed that he did indeed have Marfan Syndrome and that his aortic stem is mildly dilated which will require him to be on serious medication within the year. Four months later our pediatrician strongly suggested that we have Jack tested for an Autism Spectrum Disorder and he was eventually diagnosed with Autism. We made a decision to have in-home intensive therapy done which started last month. This blog is about our journey as we try to provide Jack with all of the tools he needs to live an active, fulfilling life.<br />
<br />
After one month of therapy, we have already seen growth. He is talking more, participating more, and even becoming more affectionate. The therapy is so intensive, he is even eating and sleeping more. His current favorite is hot dogs, which he wanted for breakfast today (he didn't get it, but I really struggled not to give in). I think he's eaten more meat in the last two weeks than he has in his entire lifetime...!!! It is <i>wonderful</i> to see him freed up from some of his fears and inhibitions. I can't wait to see what else is in store for him! His current programs consist mostly of pretend play, conversation questions, matching, and imitation. So far we've learned he does NOT like to pretend being a plane or a monkey, and whatever else you do, DON'T MESS WITH THE TRAIN TABLE!!! We've also been told that he is very intelligent and some of his programs are being moved up since he is capable of doing more than what his therapist originally thought. It's going to be an interesting journey!!Kellyhttp://www.blogger.com/profile/04480994458797811339noreply@blogger.com2