Sunday, December 30, 2007
Friday, December 28, 2007
Welcome to the ride...
Thursday, December 27, 2007
Tuesday, December 25, 2007
Monday, December 24, 2007
Sunday, December 23, 2007
Saturday, December 22, 2007
Shortly after we arrived home, Uncle Mark arrived. It had been awhile since he had been for a visit, which went fairly well. Except for Jimmy peeing in his cup... he was shifting around as I went to try to get him to the bathroom. Just leaked right there, as he was drinking his medicine (I have never seen anyone move as fast as Mark did to get out of the way.) So Jimmy used his cup... I can feel you cringe, but this is my life. It's why my house doesn't really get clean or neat - I can barely stay ahead of putting out the fires. It's an effort just to get him to keep his pants on at home. Unless you are living it, it is so hard to understand what we go through.
Yeah, I wish that it had been the perfect visit, but I can't knock it - the husband made prime rib for dinner. The food was great. The boys each got a present early as Mark opened his, so Jimmy got his little Padme and Anakin action figures for his Galactic Heroes set. Rosa, their old sitter, dropped by with gifts for them as well. They both were very happy to see her as well.
Tomorrow is another packed day. We have therapy for Jimmy in the morning, a visit with Auntie D in the afternoon, and I am planning to Jacob to a kids church service here in town tomorrow night. Hopefully I can fold some of the clean clothes in the basement and put a dent in the loads of work I have to do over the break. I get the feeling it will be over before I know it.
Friday, December 21, 2007
Monday, December 17, 2007
Then a couple of years ago, Jackson got sick. His mother, Rene Craft, says he was running a high fever.
"He was lying in our bed, and he was recovering," Craft says. "And he said out of the blue, 'I like the sheets, Daddy. They're really comfortable.' And then later that day he looked out the window and he said, 'Oh, it's raining, and squirrels eat nuts."
Craft says that she and her husband got a brief glimpse of a son who had been locked in his own world of autism. Then the fever went away, and so did Jackson's improvement."
This is an interesting article. Thanks to Edwin for sending it to me. I am going to go to bed finally. Maybe I will dream about what he would say to me if he could. He has thoughts, ideas, even a sense of humor and its all locked up inside. I long for a day when it will all come out.
We got a Christmas card from a couple we have know for years - someone my husband worked with in the comics industry. Taking you back... he, an incredible creative individual in many ways, got engaged and married this wonderful woman. We hung out a bit, until we started having kids. Then it got a little harder. I think as Jimmy's problems became more obvious, we both started to shut people we had known in the past. I had my friends from Mason, women who having been walking this road with me since the day autism entered my vocabulary. The husband has been sort of walking alone. Both of us found our paths easier than constantly having to explain or apologize for what has happened with our son. I will freely admit that I have shut my own family out to some degree, just because it hurts too much to have explain or defend or justify.
At any rate, eventually they moved away and we didn't stay in touch. In part for the reasons above, but also because regular old life has kept us extremely busy. Today, their family Christmas letter revealed that their son had recently gotten a spectrum diagnosis. The husband is crushed, but I am just shocked. I think maybe we collectively have 50 people that we consider friends between the two of us. Relationships are hard to maintain in adulthood in the best of circumstances. These are the people who we manage and even work at staying in touch with, even if we don't get to see them the way we would like or should. People he knew from his store, people I knew from grad school or my job, people we know now. Of those 50 people, not one had a child with autism or anywhere on the spectrum, save us. Until now.
By my estimation, that isn't 1 in 150. That's 1 in 100. The activist in me would really like to know how many kids it takes to make autism a national emergency, so people are motivated to find a cause, a treatment, and a cure. So kids like mine can speak and interact and live a more normal life. So families don't feel like they have to hide or apologize because their child doesn't act like his or her peers. How many kids and how many families have to suffer before the rest of the world cares or acts? Or does it have to strike everyone's inner circle first?
Friday, December 14, 2007
Wednesday, December 12, 2007
The left side seemed to have worked with last round, so this focused on the right.
Tuesday, December 11, 2007
Monday, December 10, 2007
Sunday, December 09, 2007
Saturday, December 08, 2007
Thursday, December 06, 2007
Allison is amazing. It is her first year teaching, yet that doesn't scare me. I think initially she was overwhelmed, but this is now her life and passion. I honestly think she wouldn't have it any other way. It can be so hard to be Jimmy's mom sometimes - I carried that boy inside me for nine months. I have loved him more fiercely than I have loved anyone in my life. I need to know the people who I turn him over too for so much of the day love and believe in him.
I have always felt that Mr. Booty (the instructional assistant) believes him and now I know Allison does too. I am thrilled. She is anxious to continue consult and working with his therapists, which I think is great. I walked out of there for the first time this year really confident in his school situation. That helps me get through everything else I have to do with my day personally and professionally. It's huge.
Wednesday, December 05, 2007
Tuesday, December 04, 2007
Monday, December 03, 2007
Sunday, December 02, 2007
Saturday, December 01, 2007
Thursday, November 29, 2007
Wednesday, November 28, 2007
Tuesday, November 27, 2007
Sunday, November 25, 2007
Friday, November 23, 2007
Thursday, November 22, 2007
Tuesday, November 20, 2007
I shouldn't be so negative, but I am really moody today. I hate the holidays.
Sunday, November 18, 2007
It's okay Becky, just grab the Kleenex.
I love you. Happy birthday, sis...
Looking forward to a very short week.
Saturday, November 17, 2007
Jimmy had a pretty good week. I got some nice notes from his teacher about how verbal he is, how much more engaged he is. I am pretty happy with his teacher this year, though I have had a rougher time getting the therapists and school on the same page. It's partly scheduling, but I think there is a certain amount of bureacracy on both sides. It gets frustrating.
Jacob continues to be Jacob. I wonder when this whole bad seed thing will pass - he makes me crazy and I really struggle with the disciplinary aspect. It is very hard for me to do, not so much as having two sets of rules, but two different approaches to negative behavior. I just feel like I can't win and I can't get it right with this kid.
Sunday, November 11, 2007
Tonight finished with an MMA event called the Baddest Man on the Planet. You could call it one of the craziest nights of my life. My husband writes for this website that covers mixed martial arts (think UFC, Randy Couture, Chuck Liddell) and we got free tickets to this local event. A bunch of local guys came for the fight. The fighter that my husband interviewed earlier this week Matt, was on the card. Matt's opponent didn't show up for the fight, so they put out a call among the dojos in the back to see if anyone at 205 was willing to fight. There wasn't, so he bounced out of the back room to check with Steve, on of the guys who came to the show with us. Steve trains MMA and has had some amateur fights/sparring matches. It was an amateur event, so Steve thought he should consider it. He pulled Steve away from buying a hot dog and took him back to the promoter.
Next thing you know, he is taking the the fight. They give him gear to use, The other guy from the board Chivo corners him, the whole nine yards. They introduce him with an acknowledgement of pulling him out of the crowd essentially, so the crowd was definitely pro-Steve. The trade one or two shots, Steve threw this great kick, and after that it is all a blur.
He got KOed and he says he can't move. At an event like that, they put him on the board and load him on the ambulance to the ER as a precaution. I was sort of bummed that he was fighting, because I was looking forward to talking to him between fights. Turned out we had plenty of time to chat between x-rays. It all worked out. He's fine, though, and on his way home. His wife has even forgiven him for doing it, I think.
It was sort of insane all the way around. But it was really nice to finally meet Steve and Chivo as well. A lot of fun. This was the second time I have seen someone I know step into the ring. But after KC and now this, I don't think I can ever watch another e-friend step into the ring. My stomach is still in knots.
At least he is going to have a great story for work on Tuesday.
Friday, November 09, 2007
I think what is most striking is that he son's onset was marked by seizures, a much more dramatic arrival than Jimmy's autistic beginnings. Each story seems to be a little different. I'll keep you updated as the book goes.
Tuesday, November 06, 2007
They actually administered the primer, 1st, and 2nd grade word lists. He got 15 primer, 16 first, and 9 second grade words correct as well on the assessment, all out of 20. Cognitively my kid is all there. It's just getting it out. We are also amending his IEP for his speech goals and the accommodations to include a weighted vest.
I have to go call out sick for tomorrow. I have almost completely lost my voice and I am running a fever. When your job is completely predicated on your ability to speak, losing your voice is sort of a problem. Getting through today was a major chore.
A new Jimmy pic for you... from a recent therapy outing to McDonald's.
Monday, November 05, 2007
I finally got ahold of someone at the CSB. Jimmy's psych eval is going to likely cost about $500, an evaluation that needs to be completed before we get him on the DD Waivers list. I am going to apply for a community grant for the funds. It's absurd that it costs money to get on a list from which it will take years to see any services or results. I feel like life is about jumping through hoops and it always will be.
Sunday, November 04, 2007
Saturday, November 03, 2007
CDC scientists believe education numbers are misleading, because they reflect only how kids are categorized for services. They say there's no clear evidence doctors are substituting one diagnosis for the other.
Some parents believe environmental factors — ranging from a preservative in vaccines to contaminants in food or water — may be important contributors. (The last doses of early childhood vaccines containing the preservative thimerosal expired in 2002, although some children's flu shots still contain it.)
Dr. Gary Goldstein, scientific adviser to the national advocacy group Autism Speaks, said the explanation for the rising autism prevalence is probably complex. Labeling and diagnosing probably play a role, as do genetics, but he believes the increase surpasses those two explanations.
"I'm seeing more children with autism than I ever would have expected to see," said Goldstein, who is chief executive of the Kennedy Krieger Institute, a treatment center for pediatric developmental disabilities in Baltimore.
Autism Speaks budgets more than $4 million each year to research the causes of autism, and about 90% of that has gone to genetics research. But organization officials recently have been talking about changing that mix, and spending as much as 50% of that money on potential environmental triggers, Goldstein said."
Last night was respite at McLean Bible Church - I really needed it.
Tuesday, October 30, 2007
Sunday, October 28, 2007
Saturday, October 27, 2007
Jacob got quite the haul in presents. He got the Optimus Prime foam launcher toy, which he has coveted for awhile. He went behind the TV to retrieve a missing dart and PUSHED THE TV OVER. Killed it. I had to go to Walmart to get a new one. An extra $300 I didn't expect to spend this weekend. He is seriously on my poo list.
Oh, and we left the car door open as we were unloading it. The chief of police knocked on our door to let us know. He had the mayor in the car with him, out for a Saturday night patrol. They got a good laugh at my day. Just another quiet evening in Manassas Park.
Friday, October 26, 2007
This is the second outdoor birthday I have planned. Both have been this year. Both have been dampened by the rain. Never again.
Wednesday, October 24, 2007
Or maybe Mom is just overtired. The consult that was approved at FAPT six weeks ago has yet to be completed. It is harder and harder to measure his progress as he makes strides in some areas and slips around in others. The school didn't even do a proper report card for him - because they are doing nothing academic with him. Again, I have no sense of what he does with his day. There is no data collected for him at school, so I have nothing tangible with which to assess his progress. I feel like the wheels are spinning and time is slipping away.
I guess the bright spot is for the second day in a row, he was asleep by 8pm. Of course, Jacob didn't let me finally go to sleep until almost 11. Hopefully, I will get to sleep a little earlier tonight.
Tuesday, October 23, 2007
I did see the middle part of "Transformers" - it's a pretty good movie. No wonder the boys are so into it.
Monday, October 22, 2007
Friday, October 19, 2007
Her office gave me a reference to a doctor in Lynchburg - three hours each way. She was listed as accepting insurance on my company's website, but her website said that they are no longer taking insurance. Doctor's visits are $350. You have two of them in the first month. How depressing is that?
Why won't conventional doctor's look into this whole yeast thing? Why can't DAN doctors take insurance? Can someone please explain it to me?
Wednesday, October 17, 2007
Do your duty: come out and vote on Nov. 6
LETTER TO THE EDITOR
Tuesday, October 16, 2007
With the upcoming elections for state office rapidly approaching, I am saddened when I think the vast majority of registered voters will not even take the time to go to the polls. There are those who feel like a single vote won't make a difference or feel that the issues that the candidates are discussing are not relevant to their lives. If that's the case, it is a voter's responsibility to dig deeper.
For a voter like myself -- whose greatest passion and issue is the one that touches my life the most: autism -- getting the answers that are important to me requires more than just reading what arrives in my mailbox. Fortunately, I have found Jeanette Rishell, Delegate Jackson Miller, Bob Fitzsimmonds and State Senator Chuck Colgan more than willing to return a call and talk to me about what is most important to my vote -- the range of needs of autistic children and adults and how to best meet them in the public and private sectors.
All have been gracious, engaged, and attentive. Not one has offered miracles, but they have listened and promised to continue to do just that if elected.
As frustrating as politics can be at times, the right to vote is a gift that many in the world never get. I would encourage people to ask questions of these candidates, think about what is important to you, and vote. Democracy was never meant to be a spectator sport -- please be an active participant on Tuesday, Nov. 6.
Tuesday, October 16, 2007
Today, as is everyday, was one of highs and lows, dealing with the school and therapists, a career and two boys. Jimmy said "Goodbye Taylor" to a girl who ran up and told me that she was Jimmy's friend. Everytime that sort of stuff, I sort of mist up, usually with joy, but today it was a mix of grief. Jimmy is never invited to school birthday parties. Of course, we get invited to T's parties and some of my other friends with kids, but never any from school. There is a whole life of being a normal child that he will never, ever have. That I will never, ever share with him. It is painful in a way I can't even articulate because I love him so much and wanted so much for him. I still do, but is diminished in some respect by where he is today. He's in the tub right now because he climbed in the kitchen sink and pooped, still in his dress shirt from school photos. The school photos the school secretary forgot to give Jimmy's teacher for the class of four. At Cougar, he is well known, but is seemingly invisible in so many ways. There was the bus saga. The PTO snub last year, as well as the art show. And for the second year in a row, they forgot to give his class the picture form. How is that shit not supposed to hurt? (I know a few important people read this blog and I shouldn't swear, but you would swear too!) It is a pain that isolates you in this shared experience that people of a certain age have in raising a family.
But I am proud of him. Taylor hugged him when he said goodbye. I think it was the first time that she heard his voice. The elation of the small victories saves you from the pain. Victory and my love for him saves me every day.
Monday, October 15, 2007
October 1X, 2007
Dear Chairman Obey and Ranking Member Walsh:
On behalf of the estimated 1.77 million American families affected by autism spectrum disorders (ASD, hereafter referred to as autism), we thank you for your leadership in including $16.5 million at the CDC for autism activities in H.R. 3043, the 2008 Labor, Health and Human Services, Education and Related Agencies Appropriations Bill, and respectfully request that you provide at least the House level for autism activities at the CDC and support at least the Senate level of $37 million in HRSA, for autism activities in the Conference Report on the Fiscal 2008 Labor, Health and Human Services, Education and Related Agencies Appropriations Bill. In addition, we respectfully request that the House conferees agree to the Senate level of $1 million within the Office of the Secretary of Health and Human Services for administration of the Inter-Agency Autism Coordinating Committee.
As you may know, it is estimated that 1 in 150 children in this country has autism or another Autism Spectrum Disorder (ASD), making it more common than pediatric cancer, diabetes, and AIDS combined. The condition has truly become an epidemic, yet federal funding for autism research is less than that for much less prevalent diseases.
Last year, Congress very appropriately responded to this crisis by enacting the Combating Autism Act (CAA). For Fiscal 2008, the CAA authorizes a total of $168 million for a variety of critical autism activities, including: (1) $16.5 million for the CDC to conduct its Developmental Disabilities Surveillance and Research program; (2) $37 million for the Secretary of Health and Human Services to carry out autism education, early detection, and Intervention programs; and (3) $114.5 million for the HHS Secretary and the NIH to form and operate an Interagency Autism Coordinating Committee, implement the expansion, intensification and coordination of research on ASD, and fund and review autism centers of excellence.
Both the House and Senate passed these authorizations, the House by voice vote and the Senate by Unanimous Consent. Again, we thank you for your support in the House-passed Labor, Health and Human Services Bill, H.R 3043.
We thank you for considering this most important request. If you have any questions or would like additional information, please contact Kenneth DeGraff in the office of Rep. Doyle at (5-2135), Tim Lynagh in the office of Rep. Chris Smith (5-3765), or Peter Kay in the office of Rep. Carolyn McCarthy (5-5516).
Christopher H. Smith
Sunday, October 14, 2007
Yesterday was an anticipated October event for us... the Manassas Park Fall Festival and Fire Station Open House. We go every year. It was Jimmy's first time on one of those inflatable slides. It was smaller than the ones he has seen before, but he did it. I hope he will make it down the shark slide at his brother's birthday. Jacob didn't want his photo taken, so he turned around mid-slide. The last photo was of Jacob learning how to use the fire hose. Once the fire chief taught him, we couldn't drag him away. He tried to nail me with it - fortunately, I moved quickly.
Saturday, October 13, 2007
Wednesday, October 10, 2007
"There are many safe methods to treat yeast overgrowth, such as taking nutritional supplements which replenish the intestinal tract with 'good' microbes (e.g., acidophilus) and/or taking anti-fungal medications (e.g., Nystatin, Ketoconosal, Diflucan). It is also recommended that the person be placed on a special diet, low in sugar and other foods on which yeasts thrive. Interestingly, if the candida albicans is causing health and behavior problems, a person will often become quite ill for a few days after receiving a treatment to kill the excess yeast. The yeast is destroyed and the debris is circulated through the body until it is excreted. Thus, a person who displays negative behaviors soon after receiving treatment for candida albicans (the Herxheimer reaction) is likely to have a good prognosis.
Please note: treatment for candida albicans infrequently results in a cure for autism. However, if the person is suffering from this problem, his/her health and behavior should improve following the therapy."
I have no illusions, but I would be willing to try almost anything within reason. This, to me, is reasonable.
A more thorough report can be found at the Healing-Arts.org.
Monday, October 08, 2007
So, when we met, I asked you about the possibility of mandating coverage of therapeutic and habilitative services for children with autism and other developmental disabilities. You asked if other states provided coverage for these services and I rattled off California, New York, and Indiana. This document from Connecticut actually indicates that there are sixteen providing coverage in some form or fashion. I personally am a big fan of Indiana's language as stated in this document:
"Indiana. Policies must include coverage for pervasive developmental disorders, including autism. Coverage may not be subject to dollar limits, deductibles, copayments, or coinsurance provisions that are less favorable to an insured than those that apply to physical illness. Insurers and HMOs cannot deny or refuse to issue coverage on, refuse to contract with, refuse to renew or reissue, or otherwise terminate or restrict coverage on an individual because of a pervasive developmental disorder diagnosis (Ind. Code §§ 27-13-7-14. 7 and 27-8-14. 2-1 through 27-8-14. 2-5)."
Pennsylvania has been considering legislation there, which the governor there endorses.
Currently, insurers in Virginia are not required to covered the needed habilitative services for autistic children, including but not limited to speech therapy, physical therapy, occupational therapy, and Applied Behavioral Analysis, a therapeutic approach that helps these kids achieve language, social skills, and appropriate behaviors so they can better integrate into social, school, and community settings.
Instead of covering these services, the health insurance companies are essentially passing these needs to the state and county governments. Early intervention programs and the public schools cannot meet the adequately meet the needs of this growing population of children with autism and other developmental disorders. When Jimmy was diagnosed at the age of 4, 1 in 166 children was diagnosed with autism. A year later, it was 1 in 150. Now in boys alone (boys make up 75% of diagnosed cases), the number is 1 in 94.
Florida has been considering legislative activity on this matter. Their Austism Society has a talking points document that illustrates the importance of this coverage. In Florida, Medicaid covers these needs and private insurance does not.
"Parents who consistently provide therapeutic services, with after tax dollars, often risk bankruptcy or sometimes fraudulently divorce to qualify for Medicaid. In many cases this increases the financial burden on the State, since the State must also then provide care for siblings and indigent spouses.
Insurance companies and health maintenance organizations are in a much better position to negotiate lower rates and better quality service. Eventually, coverage costs will decrease as more professionals are trained to work with autism. Coverage will assume the cost of treatment at a lower rate.
The average cost of cumulative therapy for children with autism is approximately $20,000 per year and steadily decreases when recommended frequencies are administered consistently.
The targeted interventions are scientifically proven effective treatments for autism. They have the equivalent effect as a surgical procedure or medication treatments for other afflictions.
The estimated increased cost to insurance providers is approximately $4 million, considering recent State increases in waiver eligibility, which would be spread over all policyholders. This represents less than a meager 1/12th of 1% increase, which equates to less than 4 cents per $500."
Although early intervention is best, intensive services (which reduce overtime as kids improve) can begin at any age and dramatically improve the quality of life for children with autism. From that same Florida document:
"Children who go without the essential treatment may never have the ability to master basic life skills and they may become a danger to themselves and to the community. For every $1 we spend before the age of 5 we save $7 on lifelong care."
Schools have a role in educating these kids. The state may have a role in helping with needs like respite (needed, since the divorce rate in families with autistic children hovers around 85%.) Medical insurers have a role too - they should made to share in the responsibilty for therapuetic interventions that this medical diagnosis requires to allow them improve and live a full and meaningful. That is what I want for my son Jimmy. It's what any mother wants.
I know you thought he was cute and he is. That is my baby. He's six, but he is my baby. I love him with every fiber of my being. As difficult as this has been, I don't think I could change a thing. My life is richer for having him in it. Although I wish he could be like everyone else, I thank God everyday for him. I hope you have an opportunity to meet him again. He's a lot of fun.
Sir, not to be over the top, but it was really an honor to meet you today. I look forward to hearing from your staff soon.
And thanks to everyone else that I met there. From the bottom of my heart, thank you E.J. Scott for the invitation and to Ernie Porta for dragging me up there, pushing me past the State Police detail, and introducing me to Governor Kaine. I appreciate it greatly.
Thursday, October 04, 2007
Monday, October 01, 2007
What really amazed me was Bob FitzSimmond, who is running against Colgan. I spent 42 minutes talking to him on the phone. He spent some time on the Community Services Board, so while he doesn't know as much about autism, he was very willing to listen and had a good many ideas. I was kind of impressed.
None of this should be construed as an endorsement, because I am not 100% who I am voting for yet - mostly because of the caliber of candidates. I thought that some of these people just didn't care, but I am impressed by how much they actually do.
I should really get a hobby though... this is what I am doing with my son's sick day. Maybe I will try to clean house or something. I have no life.
Thursday, September 27, 2007
After all the grief I have given them, I bet they don't mess with his bus route next year. :-)
Wednesday, September 26, 2007
Tuesday, September 25, 2007
I am getting good reports from school however, as well as his therapy sessions. I guess to some degree home is better, but this whole poop thing does get me down.
I got my foot checked today. I pulled a tendon. Mercifully, it doesn't require a cast. I have special inserts for my shoes however for the next several weeks. I can also go back to the gym, though I am limited to low impact like the bike and the elliptical. But at least I can go. I hope to end this cycle of getting injured handling Jimmy.
Before I go, a hot stock tip - invest heavily in the company that puts out Clorox Wipes. I go through a ton.
Friday, September 21, 2007
Thursday, September 20, 2007
McCarthy calls Carrey 'autism whisperer'
Jenny McCarthy worried about finding a good man after her son, Evan, was diagnosed with autism two years ago. Then Jim Carrey came along. "Beyond doubt it was written in the stars that Jim and Evan were a pair," the 34-year-old actress tells People magazine in its Oct. 1 issue.
"He's actually helped Evan get past some obstacles I couldn't. I sometimes call him the autism whisperer. He speaks a language Evan understands, and Evan feels safe with him."
McCarthy and Carrey, 45, went public with their romance last year. Though she's in love, McCarthy has no plans to marry the twice-divorced actor.
"There will be no certificate," she says. "It goes far deeper than that. Jim came into our life with an open heart and open arms. He's learned a lot about autism. He listens. The power of listening. It can move mountains."
McCarthy and film director John Asher filed for divorce in August 2005, after six years of marriage. Earlier that year, Evan, now 5, was diagnosed with autism.
McCarthy, who starred on MTV's "Singled Out," details Evan's progress in her new book, "Louder Than Words: A Mother's Journey in Healing Autism."
She says Carrey was curious about Evan — in a good way. But she was nervous about introducing them.
"He was intrigued," she says. "He asked questions. Still, it took me about a few months to bring Evan over."
Tuesday, September 18, 2007
Yesterday, we also had our FAPT team meeting. They are continuing consult and direct services for another 90 days. I am pleased about that. I also found out why our caseworker over at the Community Services Board hadn't responded to my e-mails regarding getting a psych eval for Jimmy so I can get him on the DD Medicaid Waivers waiting list. He left abruptly. Nice to know. At least now I have another contact to get going with that.
That's the brief version. I have finished with the last class I am going to take for a while, so I should have time to recommit myself to my blogging.
Friday, September 07, 2007
Thursday, September 06, 2007
I know the natural solution would be to have my husband drop him off. The kiss and ride isn't equipped for a child who does not separate well and can't walk to the door by himself. Moreover, most schools have a holding area for hundreds of students until the bell rings. Jimmy couldn't function there either. So Jimmy misses instructional time and my husband gets to be late to work everyday until this problem is solved. I wonder how long his boss will tolerate that.
Tuesday, September 04, 2007
I am a minivan driving mom. I have joined a sorority of millions. Eeek. I'll try to post pics tomorrow.
Jimmy had his first day of school today. The teacher reported that they spent the day getting to know each other. Nothing else remarkable to say... except he read me a Mo Willem book. I turned the page and he read. It was so neat.
Saturday, September 01, 2007
Last Sunday, my BFF T took me to the Indigo Girls. It was a great show and just fun to hang out with her. She only lives an hour away and I am embarrassed that I never seem to find the time to go and see her. Actually, going to her house is one of the few relaxing outings I can possibly make. She has three kids and has known Jimmy since the beginning, so I never have to explain. That means a lot to me. I respect her, her intellect, and her wit. Okay, maybe she is a little bit of a smart ass, but that's not a bad thing. Her youngest starts kindergarten on Tuesday. I can't believe so much time has passed...
We have started the car shopping process. I test drove two cars today. We are going to shop tomorrow while my mom is here to watch the boys and again on Monday if we have to. I hope to have the rental back by Tuesday, rolling into the new school year in a new ride.
Thursday, August 30, 2007
Monday, August 27, 2007
Jimmy had a huge meltdown tonight. I haven't even started the new medication with all of the added car drama, but I am concerned. He didn't want to be in our bedroom, didn't want to be his, cried for a good 40 minutes. I wish I understood what plagued him sometimes.
We have doctor's appointments Wednesday afternoon and I have a transition meeting with the new teachers and the therapist early Thursday morning for Jimmy. I had to ask for it, but it really should be standard. Yes, they have active construction going on and had to cancel "Meet the Teacher" night for parking concerns. But what parent in their right mind would send their non-verbal child to a teacher they have never met? I just can't.
Sunday, August 26, 2007
It is with great sadness that I announce the death of my 2001 Ford Focus wagon. It was taken from us prematurely by a person who failed to slow for stopped traffic. This is the second time in a month that we have been rear ending in stopped traffic by someone who seemed to be talking on a cell phone at the time of impact. The first one was a $550 repair bill for a slow speed impact in Jim's car when we came back from Texas. This impact was not at a slow speed from what Jim told me. In this case, the driver was cited by Fairfax County Police. My car was pushed into the vehicle in front of it, so there is front and rear damage as well as airbag deployment. I think the bill from this will more than likely total me out. Jim and Jacob were on their way to meet Jim Sr. for a train show at the Dulles Expo. As you can tell from the photo, Jim was hurt - he has a burn from the airbag deployment as well as a sore back and neck. Jacob seems okay, but he is sore as well. He was scared crapless when the airbag deployed. Both went to the emergency room and both will be going to the doctor again this week. It could have been so much worse, though, but it makes me sick that they hurt and had to go through something like this.
Friday, August 24, 2007
We have a nice visit on the Hill with one of Congressman Wolf's LAs. She knew very little about autism, so for an hour I shared with her my experiences with Jimmy. We had to keep off the Mr. Wolf's desk, so eventually we let him watch TV. He had a very nice flat screen in his office, where Jimmy watched Sagwa and Barney. I asked her several questions about the Combating Autism Act and the money from it. I hope she tracks down an answer, those I know that the wheels on the Hill grind very slowly. It was gratifying to just get time with someone like that.
I couldn't get him not to squint, but at least he looked at the camera.
We have our rescheduled doctor's appointment today for Jimmy. I got a note in the mail confirming the appointment for Rockville. Since I was told that it was definitely Fairfax, I was concerned. So I called the doctor's office. She breathlessly called back to tell me that there was a glitch and that all of the doctor's patients were scheduled into Rockville by mistake and it was indeed Fairfax. I was the only person to pick up on it, so she had to now call all his patients to clarify. My good deed for the day. Apparently, however, Children's Hospital's office manager is Howdy Doody. I have not been in a single department there where the office wasn't a mess.
Wednesday, August 22, 2007
Friday, August 17, 2007
Thursday, August 16, 2007
Wednesday, August 15, 2007
Monday, August 13, 2007
We got back on Sunday, going to bed early because I had to get up at 5:30 a.m. to get on the road at 6:30 for a 9 a.m. appointment at Jimmy's specialist in Rockville. On a weekend, it's about an hour. I allowed two hours for the drive since it was a Monday morning. I arrived up there at 8... only to find out that the doctor had moved his vacation up a week and canceled my appointment. It would have been nice if they had called or left a message. I made it back to work by 9:30, but I am still steamed. The doctor is very good at what he does, but is not good with follow through with correspondence and so forth. But there aren't enough developmental pediatricians to go around - I have to stick with him because most aren't even taking new patients in D.C.
But that has been the only negative in the past several days. My first day back at work was great... I got a great deal of unpacking done today and will likely have a decent handle on the workroom and my office stuff by the end of tomorrow. I also won't have furniture until next week, but I am just going to roll with it and bring my laptop to work.
The photos are on the upstairs computer, so I will post those later.
Saturday, August 11, 2007
Friday, August 10, 2007
I will update with a ton of photos when I get home, but we are at Sesame Place, our last blast before I head back to school to ready the new library on Monday. We went all out this time, including the Dine With Me character lunch for the boys. They loved it, especially Jimmy. But that would be an understatement of what really happened...
The moment we walked in, Jimmy said "Cookie Monster" in his tiny little voice. We knew that we had to be sure that Jimmy got a minute with Cookie. The characters all floated around the room - it was a great experience. At times Jimmy found it a little overwhelming, but he really enjoyed his visits with Ernie and Zoe. Actually, Zoe hung out for a while. I always tell the characters about Jimmy - it often makes a difference in their approach to him - and Zoe took a lot of time. I was babbling on about him and Zoe pointed at me and then made muscles with her arms. "Your strong." I was so touched. So I told her about him and my other kids at my school and she actually pointed at herself, crossing her arms, and then point at me. "I love you." Eventually she said goodbye to the boys and moved on, but Zoe was just so sweet.
Jimmy told the character handler of Jimmy's desire to see Cookie Monster - he had to, because Cookie had been hanging out on the other side of the room. Right after he finished his song, he cruised over to our table. Up until this point, Jimmy greeted the characters warily at first. When Cookie Monster arrives, he smiled a bit. He was excited to see him. Cookie hung out for a few minutes too. We told him about Jimmy saying his name when he arrived, that Jimmy loved Cookie Monster on Sesame Street, even that the first time I realized Jimmy understood spoken language was when Jimmy laughed at one of Cookie Monsters jokes on the show.
It was such a great experience, I could not have imagined it getting any better. But it did. As we were walking over to the big play area to let them run around, three college aged kids were coming my direction. This very petite and pretty girl walked up to me and started with "You don't know me..." It was Zoe out of costume. She told me that I was amazing and just kind of told me what she was trying to express to me when we were at the event, when she couldn't talk. Then the guy with her spoke - he was Cookie Monster. He said was very touched that Jimmy was so pleased to see him. I am just sorry that Jimmy wasn't with me. He had gone ahead to the playground. I told them about the blog, so I am hoping they will visit. I don't think I told them enough how amazing they made our day.
Tuesday, August 07, 2007
Eventually, Jacob rejoined us and sat in the single seat. Then I sat there as the boys played. Then Jacob moved back. On approach he started freaking because his ears were bothering him. He want to lie across my lap, so I had to move Jimmy to the single seat. What happened next brought tears to my eyes for the sheer normalcy of it.
He sat there, quietly. He looked out the window happily, watching the world go by beneath the wings.
He pulled the emergency card out and read it. It was cute. Then, when they made the annoucement that the seats had to go upright... he pressed the button to do just that. I think he understood what was being asked and he did it. It is so simple, yet completely blew me away.
I am so proud of my boy.
So, since it's the middle of the night and I am tired, storytelling will be limited. Here are a few photos...
Jacob eating ice cream at Braum's on Sunday.
My dad's Braum's selection.
To my left...
and my right on the flight from DFW to Nashville on the way home...