Still a Mom

Yes my husband is a stay-home Dad. He's a great dad. He does a lot around the house. But I'm still the mom, primary cook, finance director and often errand runner. And with two boys on the Autism spectrum, things can get a little crazy around our house. I've finally decided to spare my friends the burden of my constant ramblings and start a blog.

With modifications

Friday was another pretty bad day at work - two budget meetings and some personnel issues made for a long trying day. On the way back from the office from one of the meetings I passed the Italian-American Club where they were setting up carnival rides. By the end of the day, I had forgotten about it. However, Saturday morning after baking four batches of Christmas sugar cookies, I mentioned it to Scott and we decided to pack up and try it out.

We arrived about 1:00 to see the sign that indicated they opened at 3:00. Oops. So we ran some errands and went back him. My folks called so we invited them to join us. And off we went again.

I'm not sure how to write about a carnival. There were rides and games. The arm bands for unlimited rides were $20 each. The food smelled bad. The carnival workers were incredibly nice (though they apparently do not have a dental plan benefit). And it was one of the greatest afternoon/evenings we've had as a family.

Saturday evening, I wrote to some friends and said we were a normal family - just having fun at a carnival. Scott and I each admitted to the other later that we expected to be there 20 minutes tops. The expected noise (which was bad by/on some rides), the expected crowd (which wasn't bad), the expected lines (which were pretty much non existent) and simply the experiences we've had in the past attempting to do family outings really made both of us a little leery - but willing to try.

I'm not sure who had the most fun. It might have been Charlie who loved being spinned, jerked and whipped around on any and every ride he could get on (especially the Superman ride he went on four times!). It might have been Cal who enjoyed the perfect mix of independence on some rides and the security of having daddy with him on others. It may have been Grandma and Grandpa who enjoyed watching their boys laughing, giggling and experiencing something new. But it was probably a pair of very proud and amazed parents. I really don't know how to put it into words the joy of such a relatively normal event. So I guess I'll give up trying.

Today in thinking about it (I feel like I'm reliving a successful sporting event or something!) I've realized that we didn't suddenly become a "normal" family - but we found a way to make modifications. Cal's report card provides that he is on grade level - with modifications. I think those are two words that I'm going to start working harder to embrace and celebrate: with modifications.

For the carnival, there were small modifications - like Charlie's wrist band that the lady attached to his shoe when I explained that he wouldn't leave it on his wrist; or bypassing certain game activities so Cal didn't freak wanting a balloon. The greatest modification was Charlie's stroller. Several weeks ago, we took the boys to a fall festival. I didn't' blog about it but suffice it to say it wasn't the easiest of days. Cal did awesome - he had his face painted (in spite of sensory issues - woo hoo!), he did a group craft, he played on the obstacle course and in the bounce house and took a hay ride. We would have stayed longer but while Cal was doing most of those activities, either Scott or I had a death grip on Charlie. Our church where the festival was sits on a busy road and Charlie still runs. So Charlie was on our shoulders, hanging from our shoulders, wrapping around our feet or some other difficult behaviour the entire time. I left feeling so discouraged and frankly jealous of parents who could stand back and watch their children or socialize with other parents.

After the festival, my mom made a passing comment about it being too bad that Charlie had outgrown his stroller and that the wagon is too big for the car. It reminded me of a long-ago forum post about a friend gifting another family of a special boy with a special stroller. How could I have forgotten? A Google search and a few links led me to Charlie's new wheels - a McClaren Major Elite stroller - designed for special needs kids. It is an umbrella stroller with a five-point harness for up to 140 pounds. The price tag (more than $350) gave us pause but not for long. We ordered it even before my parents generously contributed more than half the cost.

Has anyone ever cried about a stroller before? Because thinking of this one has brought tears to my eyes more than once. And without a doubt it was a major reason why yesterday was so successful. Charlie had a safe place to be. He was secure without Scott or I having to manhandle him. After the first 20 minutes where both Scott and I were waiting for the bad to come, we were ALL able to relax. It is rare to be out in public and not be hyper-sensitive anticipating Charlie's behaviour. His vocal stimming on the rides was met only with smiles. His excited yells between rides - no problem. It was simply a great time.

With modifications. We've been living it for four years now in various ways. It's nice to put a slogan to it. We're a normal family - with modifications. Hee.



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Random Ramblings

Warning: Charlie is back to thinking 4:40 a.m. is a nice time to wake up. Eighteen hours and a really full stress day and this is bound to be a scrambled mess but here we go.

Shake the Hamm

Sometimes interpreting Cal is frustrating - but most of the time it is so fun! Yesterday he brought me one of his CARS - Hamm - and told me to shake it. I was less than interested and not paying attention to his repeated attempts for me to shake it for the money (in fact I sort of wondered if Scott was watching some inappropriate on tv). Finally I listened well enough to realize that he was wanting me to shake the Hamm for the money to come out. Hamm, while a CARS car is actually a character from the Toy Story movies - a new passion of Cal's. Hamm is a pig , a piggy bank to be exact. In the movie they shake Hamm and money falls out. I'm thinking a piggy bank might show up on Santa's list this year.

A tasty treat?

We try to talk to Cal about his days at school to help him understand conversation. To say we have mixed success would be a bit of a stretch to the good. However, the near-seven-year-old humor most definitely IS hiding in there. His most enthusiastic discussion with us by far was the recounting of the instruction: "Em-ma, don't eat the boo-gars." He thought it was hilarious. We ask if Cal ate the boo-gars. He claimed no with his finger dangerously close to his nose. (Names changed to protect the innocent and not-so-innocent).

Early bird meets Betty Crocker

So last Friday, a school day/work day, I had to wake both boys. Saturday morning at 5, Charlie was wide awake and not happy. By 5:20, he was screaming. So we gave up on bed and came downstairs. After 10-15 minutes, he calmed down, I read forums and then decided to be productive. By 9 a.m., I had rolled, cut and baked two batches worth of sugar cookies, cleaned the kitchen, emptied the dishwasher and loaded it again, tidied up the living room and made chicken salad from a rotisserie chicken. Of course I was ready for a nap by then too.

Yeah, sure, bring the presents

We're preparing for a visit from the in-laws and will be celebrating Christmas with them at that time. We talk with my FIL at least once a week and always have it on speaker so Cal can talk and Charlie can make his presence known too. Two weeks ago, FIL told Cal he was coming to see him soon. Cal was playing and didn't really react. So FIL threw in the carrot that there would be presents when he came. Sunday FIL again told Cal he was coming to see him. Cal's remark: "Present surprise for Cal!" And he is really looking forward to seeing Gramps too. I promise.

Say "you handle it!"

Saturday I suggested to Scott that maybe this year we should just try to get a somewhat decent shot of the boys for Christmas. Scott isn't buying - to him, we should have the family Christmas picture. Okay, so as soon as he finds time for me to get a haircut, color my hair, cut Scott's hair, Cal's hair and Charlie's hair, find coordinating outfits and schedule the appointment, I promise to show up. Think that will work?

Goodnight JohnBoy

(cue cute little German girl . . .) "The sun has gone to bed and so must I-i. Good-bye." Yes, I really was in a production of The Sound of Music when I was a kid. I wasn't the cute little one though - I was Brigitta, the reader. That's a whole other story - made more interesting by the fact that I can't sing. Or dance. Then again New Haven High School is really, really far off Broadway.



Comments (1)

  • 11/18/08 - SuzSerI'm still smiling...especially about shaking your, I mean the, Hamm.

And nearly two months later . . .

Wow. I have so missed writing  I wish I could somehow record my thoughts while driving and have them magically appear. I just haven't been able to fit writing time into my days. So an update . . .

Cal is still doing really well in school. His first grading period found him on grade level with modifications for all subjects. I spent about two minutes focused on the "with modifications" part and then received the mental kick in the pants to realize that the "on grade level" part was far more important. Cal's primary teacher is on maternity leave (a baby boy!!) but the sub has been really good. I will admit I'm very much looking forward to having his regular teacher back after the first of the year though. I just have so much confidence in her. We've also scheduled a conference with Cal's inclusion (mainstream first grade) teacher for some feedback directly from her on Cal's strengths and weaknesses and what we might do at home to help more.

Cal was Speedracer for Halloween and we was really into the holiday. We talked about it a lot in advance and he was very excited. He was not at all shy about going to the doors, only tried to walk into homes twice (an improvement!) and was great about saying trick or treat please and then thank you. We love our little neighborhood but there are not a lot of children here and the few who are seem to go elsewhere for Halloween. The result is that a lot of people in the community don't plan for trick or treaters. It didn't bother Cal and was still a nice chance to talk to the neighbors.

Cal's vocabulary is expanding my leaps and bounds these days and his ability to communicate is as well. He had a little tummy bug about a week ago and he was able to communicate "so sick," "help me" and "no school." Later he told Scott "sick all gone" to communicate that he was feeling better. He's started telling his version of a joke - basically saying something in the cadence of a joke and laughing but it is still an incredible breakthrough for him. And he is organizing and sequencing his plans. He is allowed to take one car to school each day. Tuesday he told me that it was Tuesday Woody go to school. Tomorrow is Wednesday for Hamm and then Thursday for Mike.

We had a cool snap about 2-3 weeks ago in which I confirmed my suspicions that Cal has grown three inches. He did have two pair of sweat pants luckily. I have yet to get him stocked but it is back to 85 degrees so I have a while.

Charlie is doing well too. We had an appointment with his neurologist this week. One of the things we realized in preparing for the appointment was how much we are responding to Charlie's communication to us. It has developed naturally that we'll respond to Charlie with the words "you're welcome" or "I love you too" because he's clearly initiated the conversation - not in words but in action or expression. He is definitely spending more time engaging in "our world" and less time inside himself.

We've also been heavily involved in PECS training with Charlie. Basically PECS is a Picture Exchange Communication System. Charlie is in the first phase with it using single item pictures to communicate desires. He is doing SO well with it. They are really awesome at school with the consistency - and we are doing much better at home. It is difficult and awkward and first, especially since dinner is one of the best times to use it, but we are learning. Our neurologist is not terribly optimistic that Charlie will develop spoken language so if this is a system that he can use, then so be it. Plus PECS is geared at working toward spoken language so we certainly aren't giving up on that.

Charlie is sleeping better. He still wakes at least once a night but he is usually down again in about an hour - and he's rarely upset when he is awake. We'd still like to actually sleep THROUGH the night. Hopefully soon.

Scott is doing fine. He's a political junkie on an average year so this year was a major activity. While I never blogged about it, Scott and I were/are big Obama supporters. We're very pleased to see our country decide to try something different.

Scott's also been building and selling (yeah!) a lot of models. It is amazing how much easier it is to work while the boys are in school. He's also been learning to cook some and taking on more of the errand running for the household - things that definitely help me.

As for me . . .I've been working a lot. I manage an accounting department with approximately 135 companies. Nearly 130 of them have fiscal year budgets. In the past, I've been involved in about half the budgets. This year? More than 100. Add to that one member of my department had a two-week vacation, worked two weeks and was out three weeks for surgery. She's back half days now. Another employee had a week vacation - scheduled before the afore-mentioned surgery. Add to THAT the fact that the economy sucks and everyone is trying to cut budgets, looking at comparisons, looking for three versions of their budgets, etc. I've been slammed working day and night.

So here it is November 13. Yikes. My grandmother has a birthday the 19th. Thanksgiving is the 27th (I think - don't quote me). The in-laws arrive December 5 and we're celebrating Christmas with them December 7. I'm supposed to have the house ready for Christmas and a week-long guest stay by December 5th. Seriously? Well, we'll see.




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