Halloween

Here they are...
SuperGirl and Thomas the Tank!

Rough night but OK

I received a call from my sister this morning - she beat me to the punch and had called the hospital to check in on Mom. They told her all was well, and that she had completed her first round of physical therapy.

I spent the rest of the day happy for her and relieved. I ran into a few friends of hers and relayed the good news.

After a day of running the kids to school, haircuts, doctors, etc I went up to the hospital to visit. When I arrived, Mom looked good.

I asked her how she was - she then told me that she had a really rough night. Her blood pressure fell dangerously low, and she couldn't stop shivering. They took her of all pain meds. As a result, her blood pressure normalized, however, she was in some serious pain.

I wonder what the nurse was thinking when she spoke with my sister earlier in the morning. My sister had not checked in the rest of the day and was under the same assumptions that I was - that Mom was doing great.

Mom has changed her tune considerably regarding what she wants to do. When initially discussing her after-surgery care, Mom indicated that she wanted the hospital stay and then a rehab facility. Well, when she realized that the cable broadcasting didn't include Fox News or HGTV, she quickly decided she wants to go home. What kind of place that services old people in upstate New York doesn't have Fox News? And there is no VCR either or video hookups on the TV - so I cannot videotape her shows and bring them up. When you are stuck in bed all day for several days on end, you need TV that you like.

They had her out of bed twice today, tomorrow a little more. She is back on some medication for pain, but I have no idea what it was. The nurse didn't stop in while I was there - my reputation must proceed me.

Here's hoping that tomorrow might be a better day for her.

Mom's Surgery

Mom is under the knife as I write this. Sisters and brother are all up at the hospital while I attend to nuttiness in our household. The doctors decided on doing an epidural with goofy pills instead of putting her under. In addition, they have givrn her Nexium the past few weeks and another anti-nausea drug today to ward of the problems she has had in the past with anesthesia. I am really hoping this helps.

The cancer has been the least of my mother's pain this past year - where as the her leg/hip/joint pain has been remarkably worse rendering her unable to drive and having to use two canes to walk. I do hope this hip replacement will do the trick. I am worried that it is not the true cause of her pain.

She is having the surgery even though she has lung cancer - however, she currently is cancer free. Her lung capacity is much improved - with a resting capacity as high as 96%! Still, surgery is risky, surgery and being 77 riskier, surgery and mega medications adds something,let's not forget her COPD and astham, and of course surgery and cancer.

She was not nervous and the staff, from the report my sister gave, has been terrific.

OK this just in - she is out of surgery. Things went as expected. I will go up to see her after ballet tonight.

Loss

Just found out that a former coworker lost a son a week ago, age 5. My heart is so heavy for this family.

Their son had contracted H1N1 - although initial tests didn't show it. He ended up with pneumonia. The child had asthma - but not severe. They are still awaitng autopsy results to indicate the actual cause of death.

Before they moved from Syracuse, they gave us the little jungle gym above. I went outside and noticed the leaves had fallen off most of the trees in our backyard. The view looked so sad to me. I wonder how they will get through these times. They havd an older daughter in second grade I believe.

There are some hurts you never get over, you have to learn to live with them. Are there people out there that don't have to go through these sorts of things? Indeed, growing up, we never had these issues - there were no disabilities in our family, no children dying. My parents were grateful for things, and they gave back to the community. They tried to express how lucky we were to us, but I am afraid I frequently did not understand. My mother would recall that her grandmother had lost children to disease, etc. People go on. They act like things are normal, they have to for the sake of the others.

Feeling pain in life comes in various degrees, from discomfort to unbearable. After having children, I can tell you that things I once found unbearable, are now merely uncomfortable. Anything involving my child is overwhelmingly difficult to bear. The thought of losing my children is unfathomable beyond my comprehension of pain. I know that Zach's disability alone is difficult for me.

I know I still struggle with the grief of Zach's disability. I dropped him off to school today, and they had disco music playing. He loves music. While watching him dance, it should have brought me joy. I am afraid it actually made me sad. He rocked back and forth from one leg to the other, clearly looking like a kid with autism. I recalled a year and a half ago being in church as the organ played the "Our Father" and everyone giggling as Zach not only got the beat, but moved his little tush like an Elvis impersonator. Anytime Zach heard music he would bust a move. Now he rocks back and forth. It's quite different. I wish I could quit thinking of "What might have been".

I recently saw a story about a central New York mother who actually adopted 8 children, most of them with disabilities. She chose to have disabled children. Mother of 8 - Inspirational This is an exceptional person. I know my grief is selfish. Most of the time it is because I feel so incompetent in handling the overall situation. This woman has taken on so much, she is so important to these children and to the community at large. I hope she realizes that. I thank her for her inspiration in my own situation.

Zach is here with me, and Sophia is too. We will enjoy life. Events in life such as a child's death should make those great times just that bit sweeter.

In the meantime, I will pray for his family. I will pray for Zach. I will do my best to be sensitive to others who may be going through the most tremendous losses there can be, of their children, whether in death or disability.

Where is he? Who is he?

I want someone to tell me where he is going to be.  I want to believe all the mothers who tell me that he will be talking up a storm in a year's time.  I want to believe he will call me Mom, maybe even tell me he loves me.

I don't know if I am giving up or accepting reality, but we have decided to scale back Zach's programs.  Since transitioning into school, he appears to have lost some skills.  I want to know why.  There are medical tests, there are therapists, there are psychologists, all these people who are experts, but no one who can tell us what to expect.  We can only look at what is going on.

There are no promises in any of this.  The therapy type we have chosen had a 47% recovery rate in a major study many moons ago.  Assuming identical conditions which we don't have,  that still leaves 53% of no recovery.  In the initial study some of the children were forever non-verbal and non-communicative. 

The fact is throughout all of this, we have been beating ourselves up for the errors we know there are between this research that showed such positive outcomes, and our therapy choices and environment for Zach.  Getting everything right seems close to impossible - there isn't enough money or people to help us achieve the perfect scenario.  We feel bad for not trying every possible treatment that we have heard about.  We feel bad about taking time for ourselves to do something like go for a run or watch a half hour of TV.  We feel that somehow in all of this, it is our failings that have been creating the lack of progress in Zachary's development. 

Perhaps he will be who he is, and we are supposed to accept that, without thinking we can contribute to his successes.  Is it our egos getting in the way?  Our feelings of helplessness since no one, especially the "experts" can give us any idea of what to expect? 

Every now and again when I find myself exasperated with where he is at - I try and take a deep breath, and take a moment to just enjoy him, smile at him, make him giggle, hold him.  I then go off to my laptop at some later time, write down a brief summation of what is going on, share it with you all, and cry.  I want to accept and love Zachary for who he is, my sweet sweet boy, but I just cannot replace the longing in my heart to have him show some notable progress, and we are just not getting that right now.  This isn't about him saying my name, I know he knows who I am.  This isn't about his saying "I love you", I know he does with every cuddle he gives me and those long passionate kisses of his!  I just want to have the joy of seeing him develop, even if it is in his own way, and I don't feel like we have that right now.  I don't care if he is slower than the other kids.  I got over that a long time ago.  I don't care if he even keeps up with the other kids with autism right now.  I just want to see some glimmer of light that he is on a path to somewhere.  I would love to have someone tell me he is going to progress- and in all honesty, we have a lot of people who do tell us that (chiropractors, therapists, homeopaths, other parents) but I don't believe them.  In some of these cases, they are likely trying to give us hope, perhaps in others they are trying to sell their wares.

I pray that the longing in my heart to hear him functionally speak go away if that is not what is meant to be.  I pray that every time I see a child his age, or younger, effectively communicate with their parent, that I don't feel a nauseous feeling in my stomach.  

There are experts, there are specialists, there are researchers.  And no one has any answers.  No one can predict what he will be able to do.

The longing in my heart brings me back to a different time in my life.  I was freshly 30, had lost my father the year prior, and when looking back at a decade of non-stop boyfriends, I realized that I was wasting my life chasing after something that I shouldn't.  I prayed with a friend and asked God that if I was not intended to be married, and in a committed relationship, that he take the longing in my heart away.  Within a few weeks, for the first time ever in my life, I broke up with my boyfriend while still having very strong feelings, but realizing the toxicity of the relationship.  It was the first time in my life that I felt secure by myself and confident that life was OK without having a partner.  I felt so empowered by my new sense of self, that I went and purchased luggage and had it monogrammed.  Well, like the jokester He is, a few months later, I met Steve.  A few months after that Steve and I were dating. And a year after that we were married.  And now I have a complete set of Eddie Bauer luggage with the wrong monogram on it.  That luggage has navigated its way through the United States, Canada, France, England, Switzerland, Belgium, Poland, and Germany.  Who cares about the monogram.

I wonder what tricks God has up his sleeve with Zach.  Will I realize that he is who he is, and that my love for him is enough?  Should I accept that he has autism, and that he will be who he is, regardless of intervention?  Do I continue to pursue the details of this disorder and how they pertain to him?  Do I continue to fight the insurance companies, school districts, and others who refuse to pay for diagnosis and treatments?  

Where is he on this journey?  Will he ever be able to tell me how he feels?  Could he be a dentist one day?

I pray that this new perspective on his therapy give us that pinpoint of light we so desperately want to see.

Up All Night

When I was single, the phrase "up all night" indicated a night filled with adventure, partying, or romance.  At age 39, with 2 kids, and the special needs stuff, well, the phrase "up all night" takes on a whole new meaning, and none of it particularly fun.

Yesterday was a typical day of perpetual motion.  Most of the perpetual motion was taking Zach to school ( a 25 minute drive) coming back to Camillus, and back off to the east to take Mom to her doctors appointment.  This doctor's appointment was to see if the pulmonologist would clear Mom for her upcoming hip replacement surgery.  That appointment took 2 hours - we discussed the current state of Mom's cancer, and they did in fact clear her.  Gotta love the case management of the medical field - the office had her down for having surgery for November 30th - her actual surgery date is October 27th.  It's non-stop, correcting these sort of mistakes between the pulmonologist, cardiologist, dermatologist, oncologist, radiologist, and surgeons.  Electronic record keeping would really be great for this of course - but there are big issues regarding privacy and HIPAA laws, standards, and security.  Companies with the appropriate background to make this happen all want to make big money off of it, creating proprietary hardware/software/middleware thus I don't expect to see it happen anytime soon. This is not a technology problem - our government and several of its agencies, particularly the military,  have been creating secure networks and applications for decades.  Greed always gets in the way.

Anyhow, good news that Mom's cancer is still at bay for now, and she is doing OK with her COPD.  The pulmonologist recommended Mom get the flu shot before surgery, and ten minutes prior to this statement, the office ran out of the vaccine.  They sent us off to the downtown office for her to get it there and that we did after picking up Zach from school. Add 45 minutes of extra time to the schedule.  Oh well.   Thumbs up for surgery, and now let's pray that she manages to bounce back from the surgery quickly and that it actually takes care of the pain she has been in for the past year.

Some of the perpetual motion from yesterday  was because I had committed Sophia to a ballet class - and we needed to find her attire: leotard, tights, ballet shoes, tap shoes. Wal-Mart came in particularly handy with the leotard business, however, we ended up having to drive around for the ballet shoes.  But alas, she was fitted head to toe in pink and looked as sweet as a pea.  Straight from the ballet shoe store we went off to class.

Of course, no where I go these days can allow me to escape autism.  While in the class, in walks a mom with her daughter that I quickly recognized.  Karla works at my former employer, and we quickly began chatting about all that was up.  After hearing me talk to her about Zach and some of the other families we have met, a woman who was listening to our conversation chimed in and told us she was a special education teacher in our school district.  She then went on to to tell me she has a 3 year old with autism.  I was a little confused by the end of the conversation because her son is verbal, gestures, doesn't have behavioral or major sensory issues.  In fact, they have not pursued a diagnosis.  He is getting some services and she works with him.   She has more background than me being a special ed teacher, but I was still perplexed by the fact that she didn't pursue formal diagnosis if he did indeed have autism.  Perhaps after seeing years of children with special needs and how the system works, she realizes the pitfalls to diagnosis.  

As well as not being  able to avoid autism, we also cannot seem to avoid chaos.  As I packed Sophia in the car in her cute little pink outfit, I slammed the door shut and saw the look on Sophie's face.  You got it - her hand was in between the car and the car door.  Off I went driving 70 miles an hour home to get an ice pack.  Her hand looked fine, I called the triage at the pediatrician's office, and they said it was likely soft tissue damage based on what I described.  Anti-inflammatories and keeping an eye on it were all they recommended. 

After the great mashed hand incident of 2009, I managed to get the kids into pajamas and to bed.  Eventually,  I fell asleep alongside them, until, 1 am.  I woke up to Zach staring me in the face.  He didn't look happy.  He could not sleep.  He wasn't fooling around, he just could not sleep.  I felt bad for him because it really did not come off as him doing it on purpose.  I changed his diaper, rubbed his back, snuggled with him.  He finally fell back asleep at around 5ish.

I have a cold that feels as it may be turning into a sinus infection, little sleep, and a meeting where I will be a speaker this afternoon, driving cross town twice a day for Zach's school, driving the other way across town to take Zach to a doctor's appointment, plus afternoon therapy - another perpetual motion day here at the Morphet home all to be culminated by the irony of no sleep - tomorrow is Zach's next sleep deprived EEG.  That's right folks, we will be purposely keeping Zach up tonight for his test tomorrow. 

Yesterday was Steve and my 8th wedding anniversary.  Now that I think about it, it was filled with adventure (trying to get Sophia's ballet gear), partying ( Sophia, Zach and I played computer games for an hour and a half together), and romance (I was snuggled and kissed many times last night).  All this fun without Steve who is out of town on business.  What is all the whining about?

Dinner at the Morphet's House

Dinner at our house usually consists of one meal for adults, one meal for sensory daughter who accepts only certain things, and another meal for autistic son on the GFCF diet.  And there are traditionally only 4 of us.  For those who are rolling their eyes, and thinking "Not in my house."  I ask you to kindly come over and try Sophia out for size some time.

I don't let her eat junk (at least not a lot) but her variety is very limited.  And eating only what she wants would bore me quite a bit - meatballs and various pastas, mac n cheese, french fries, PB & J, pizza, grilled cheese, chicken strips or nuggets, ham, bacon, eggs, mashed potatoes, yogurt, British beans, nuts of all types (raw and roasted), raisins, bread, waffles, pancakes, carrot sticks, OJ, cranberry juice, tomato juice, milk, water and the occasional celery, apple, raspberries, bananas, strawberries, watermelon, cantaloupe, and orange.  Needless to say I sneak some veggies into her via sweet treats like pumpkin muffins, zucchini bread, squash rolls, spinach brownies.  I use alternative flours that add some nutritional variety like brown rice, quinoa, garbanzo bean, fava bean, tapioca.  She takes a multivitiamin, probiotics, and fish oil supplement (Omega 3/6 blend).  We don't drink soda (diet or regular), we make a lot of our sweet treats from scratch - including homemade ice cream, cookies, cakes, cupcakes, puddings The kids consider hot air popcorn a big treat.  We try and limit the candy in the house - although we all like it!  We just made homemade rock candy with grape juice.  Although I would like her to eat more variety, nutritionally she is OK. 

I am pretty much used to the whole short order cook thing.  Life is not simple this way - but we don't get too aggravated since we are sort of foodie/health food types and have enjoyed cooking from scratch since we met.  I can recall dying Easter eggs using various things in the kitchen - and that was before we had kids - I thought it was so much fun.  I might not have the neon eggs others have from buying their Paas kits - but I like my eggs nonetheless.

Besides our goofy food situation, dinner is never quiet or without incident around here.  Usually Sophia is saying something interesting.  Last night I got the line:

Don't worry Momma, your pants are going to save you.

What does this mean?  I have no clue.  They don't always make sense, but they almost always are amusing.

As for dinner tonight?  Well, it was pretty much calm, all were eating acceptably. And then Zach let out a totally unexpected squelchy and scary scream.  Sophia then let out her own shriek and ducked under the table like a PTSD war vet thinking there was incoming and running for cover.  She sat quivering under the table for 5 minutes while I determined that Zach likely either accidentally bit his tongue, lip or finger.  Sure wish we could teach him to say "Ouch."  As Sophia calmed herself and told me she was OK, I just had to laugh aloud.  One kid's issues impacting the other kid and their issues; it was definitely like some sort of skit.  I wondered how many people have dinners like we do.  No wonder why we don't get a lot of company for dinner these days.

** Pictures from this past weekend at Critz Farms autism event.

Happy Birthday Daddy!

 

Chef Sophia helping to make chocolate cupcakes for Daddy's birthday.

The birthday card made by Sophia and Zach.

After 11 months of waiting, we just received notice that our insurance company will not pay for the Zachary's evaluation and diagnosis at the Yale Child Studies Center. They had no medical reason for denying the claim, and their excuse was that they don't pay for diagnosis coverage for determining Early Intervention coverage. Huh? We weren't doing this just for EI's sake - we were doing it for getting a diagnosis plain and simple.

I was irate at their flimsy excuse - one so apparent that they could not come up with anything good that they tried to figure out some way to deny it that seemed reasonable, although there is NO reasonable reason to deny it other than they are cheap ^^*$%s.

So as I stammered a response to this letter, Sophia says the following:

You'll show the emperors you're a butt breaker.

I laughed so hard that I thanked God right then and there that I have both my children in my life.

Have yet to tell Daddy the news - didn't want to ruin his birthday. I suppose if he reads this post - he'll likely find out.

Good bye $4000. Happy Birthday Steve!

Forecasting

Due to a death in the family, and a very sad one at that, we have flown my mother-in-law back up to Syracuse. She was home only for one week after being with us for two months!  She has decide to stay around since we have a sleep deprived EEG for Zach next week, and my mother's hip replacement is the following week, plus our usual therapy/school/ballet lessons/homework stuff.

Having my MIL has allowed us some luxury again of being able to attend parent meetings.  Zach is one of the younger children in these groups.  This means we get to see what may be coming down the pike.  My heart usually breaks over and over again at these meetings. 

At one meeting, involving much older children, the parents were discussing how to handle behavior.  One child was consistently going into the main bathroom in the house, and screaming "blood curdling screaming" according to mom, for an hour at a time.  This is so hard because the child is not violent or aggressive, so should it be corrected?  When asked why he does it, the child says becuase he was angry or frustrated.  We all like to scream once in awhile, understandable.  However, hours worth of it is hard on the parents, and the parents are concerned what the neighbors are thinking!   We discussed trying to add a timer and constraining the screaming sessions to no more than 15 minutes.  Perhaps, even trying to fade it back one minute at a time if he did respond to the timer.

Another issue mentioned - autism boys and holding their "gear" - apparently very common and frowned upon in a school environment.  The child's psychiatrist told the parents to make a bear from the Build A Bear workshop and add weights to it.  Well, I am no behavior analyst - but I think the object of the redirection is likely going to raise a few eyebrows when the child is 15.   One parent said they sent their son home with some sort off lego figure they made. The child could carry it in his pocket and it has been very helpful.  I really liked the idea - it was so great that the parents found something that worked for them.  Would it work for the other family?

Then came another family posing their issues to the group.  Their son, after several years of being told ADHD, was newly diagnosed at age 7 - PDD-NOS.  He was riding a typical bus and apparently the kids were picking on him, although the child didn't perceive it that way.  As I have read with a lot of children on the spectrum, they are excited to receive attention from peers and refer to the kids who taunt them as "friends".  They do not understand the ill will of some of these kids.  So, this little boy's "friend" had scissors on the bus, and said to the little boy "I am going to cut your backpack, OK?" .  The mean little sh*t proceeded to cut the backpack up.  When the child arrived home, he said nothing.  When mom discovered the damaged backpack later that evening, she asked her son what happened.  He said "My friend on the bus cut it up".  So the school district was notified and then, well,  nothing; they didn't respond.  The principal insisted that couldn't have happened.  Meanwhile, on the playground, this child was being surrounded by kids (one of them the backpack cutter) and the kids were taking turns spitting on him.  After mom found out about this, she confronted the school and asked where the one-on-one aid was during these events (as stipulated in his IEP for during recess).  The school's response?  We don't have enough staff for this. But it is in his IEP!!!! After 3 months of the parents not letting up, they finally met with the backpack cutter and his parents, and the boy admitted to cutting the backpack.  He was told not to do it again.  And that was that.  No major reprimand.  Beyond having mean and inappropriate behavior- what about having scissors on the bus!?!?  Hello? 

The story gets harder to hear as the parents then discuss how they requested to ride the bus with the child, and the school district refused, saying it was against policy.  After pushing, they finally got a special needs bus to pick up their son.  While on his new special needs bus,  a Camillus fire department truck proceeded to run a red light, strike the child's bus, and the child was ejected from the bus on West Genesee Street - a fairly major and busy road way in our town. (Mind you the fire dept truck did not have its lights or sirens on either.) The child immediately got up and ran across the road and got back into his seat, and as they later found out "because that is where I am supposed to sit".  The parents were not immediately notified that the child had been ejected from the bus.  They were confused about the extent of his injuries when they first saw him.  No one offered up the information.  As mom recalled the story to our group, dad - a 6 foot two, 250 pound guy, in an athletic sweatsuit who looked like he could pretty much take anyone on and win, proceeded to cry.  Talk about break your heart.  Although I am not a guy, I believe I had a pretty good idea what this guy was feeling. As a dad - his role is to protect his family, and here he is, helpless, and exacerbated by the school district and their inability to protect his son combined with their purposely poor communication with the family. 

Of course, lawyers were suggested in dealing with all these cases.  But most of the families are working class folks in a bad economy who don't feel they can afford that.

These stories, and other stories that were told that evening, were very hard to listen to.  The consistency, regardless of school district, was even worse.  I think Steve and I had a glimpse of our possible future, and it really was hard to hear.

A family group meeting I went to later was a lot less heart wrenching- probably because the kids were mostly younger and not entered into school yet.  They were, nonetheless, frustrated with behaviors and other situations.  Two of the moms talked about their sons' tantrums.  Now that their children were getting older, and heavier (50-60 pounds) it was getting a lot harder to contain the kids during public meltdowns.  They were discussing that slowly and surely they were figuring out the triggers of their sons meltdowns.  However, some things just seem unavoidable.  What do you do when they run out of chicken nuggets at McDonalds and your kid is a flailing mass on the ground with 25 people all staring at you with looks of horror and disgust on their faces?  Injuries sustained by these mothers are pretty scary - bites, scratches, bruises.

These moms were encouraging me that Zach will one day speak, and that their sons were a lot like Zach when they were 3 and not producing a lot of language.  They recalled the "aha" moment when their kids developed language functionally.  It was wild to hear how the kids went from non-verbal to speaking in grammatically correct appropriate sentences within a year's span.  This of course gave me hope.  At some point, however,  I noticed a  mother sitting quietly in the group.  I sat next to her and asked her about her son.  She was a single mom - and her son was still non-verbal even at 4 1/2.  She probably was wincing at the mother's encouragement that Zach will be like their sons.  Yes, there is a spectrum.

Steve doesn't have as much experience as I do hearing the stories from other parents.  This certainly is very eye-opening for him.  At least we are lucky enough to see the battles we are likely face in the future - many of these parents had no idea if what they were dealing with was common place or not.

Are these stories our future?  Much like the Syracuse weather, it's almost impossible to forecast - but we know there will be snow.

NY Insurance Reform

Autism insurance reform is sweeping the country, with fifteen states (including most recently Connecticut and New Jersey) passing legislation that would require health insurers to cover evidence-based treatments for those dealing with the challenges of autism. I am excited to tell you that similar legislation filed in New York is moving forward as well.

Senate Bill 2366 - Sponsored by State Senator Charles J. Fuschillo, Jr. (8th Senate District) would require private health insurers to cover evidence-based treatments for Autism Spectrum Disorders. This groundbreaking legislation will be discussed at an upcoming public hearing on October 23, 2009 at 10 am before the New York State Senate Committee on Insurance, Health, and Mental Health & Developmental Disabilities.

 A glimmer of hope - all of you who have been wondering what you could do to help our family, and  many others - please - here is your shot!

Tell Your NY State Reps!  This link will bring you to a form -when you fill out your address it will automatically detect your state representatives and create emails to be sent to them supporting the reform.  Or you may print out letters and send along.  This is so important to our family ($30,000 per year important!).  15 states already have this coverage.  Tricare insurance, regardless of the state you live in, has this coverage.  Medicaid has this coverage.  It's going to happen - we could really use the insurance help now that I lost my job.    If you want stamps - email me - I'll send them to you!

Staying the Course

At some point in the blogging process, you are bound to feel like a broken record. 
Right now, we are not seeing significant progress in our goals for Zachary.  His pointing is still somewhat limited,  his vocabulary is limited.  However, a lot of his behavior is OK.  I think this is a change up from where he was before.

It's so hard for me to determine anything about Zach and where he stands relative to neurotypical kids and relative to children with autism.  Sophia being a bit of an exceptional child with her own unique characteristics is a hard comparison.  I read about other kids on the spectrum who seem to have more symptoms, and at deeper levels than Zach - less social engagement, more sensory issues, non-verbal, and rigid patterns of behavior.  I read about self injurious behavior (head banging, biting self),  children who do not want to be held or touched, who cannot deviate from schedule.  I am thankful for the fact that Zach is not this severe in his symptoms. Will his development improve or is there a chance he could exhibit some of these characteristics? Only time will tell.

We are constantly told not to compare our children to others, to be grateful for the progress our children make relative to themselves.  I guess I am not always capable of that.  I have met other children who have progressed more rapidly and I am genuinely happy for them and their families, but I will not lie that it doesn't bring about some anxiety for me.  If I were to say it doesn't, I would by lying to you and myself.  I don't know if one day this will change, but that is how it is for now.

I go through different phases of attitude towards what we are faced with.  I go through the joy of my beautiful son and his smile, to the fear of what will be in his future. The joy of seeing him with family who accept him and take him on a trip to to the fear of when he is not in my presence how others, strangers, might treat him.  The joy of hope after reading someone's encouragement of treatment and recovery of their child, the fear that we will, like countless others, fight for services, get lawyers involved, and the treatments we fought so vehemently  for, that made our lives miserable, will not be effective for him.  Every day I have to deal with professionals who are far more educated and experienced than I am.  More often than not, they are humble and helpful people.  However, than there are those who treat me like I am a child myself, with no ability to understand the nature of what is going on, let alone be considered when making decisions of my son's future, and possibly only hope of leading a independent life. 

Right now, I am feeling helpless.  We are in a bit of a straight with the school district who wants to see Zach fail in order to provide him services outside his preschool.  The county representative also indicated that they will try to force us into a program an hour and a half away from here, so as to avoid financing a therapist in our home. 

Perhaps I am incapapble of the decisions before me.  But I have to make them nonetheless. All the experts in the world will never have the intensity of interest in the subject matter that I have.  PhDs, EdDs, MSWs, SLP, BCBA, MSE Spec Ed don't have anything on MOM.

Wish we could get out of these doldrums.  Is it the sunlight lessening, the rain, the never ending fights, Mom's upcoming surgery, a family member's death?   

I always liked the line that history is written by the winners, and this seems no different when it comes to autism treatment literature.  I have read several books written by mother's who through various means, 'recovered' their children who have autism.  I know not everyone recovers, but who wants to read about the other?  I was so glad to finally read an essay by a mother whose twins did not recover (or at least not at the time of the writing of her essay) yet still seemed to be able to be inspirational.  It was very real.

This essay got me to think of what sorts of things would make me feel more at ease.  Certainly if  we could have him be more verbal, but I would also love a little more interaction.  Steve and I love to run together, and we think Sophia has the bug too.  I guess one day if we could all run through a park as a family - that would be a great moment for us - a goal we can shoot for regardless of autism symptoms.  I guess we will just stay the course and see what happens.

Lunchbox head

So no one commented on Sophia wearing a lunch box on her head in my last post.  Hmmm.  She goes from looking totally mature for her age in one picture, posed and all, to putting Zach's Thomas the Train lunch box on her head - and note: it's the old fashioned metal type, very comfortable, not one of those new fangled fancy nylon ones that would be soft and pliable.

OK.  Sophie - how do I describe her?  There is only one of her, I assure you.  I have great joy and ultimate frustration from her all mixed together.  One of my therapists comments to me that she can tell that although Zach has the dx of autism, Sophia is likely my more challenging child.  And she is.

When Sophia was born 5 years ago, the delivery nurse made a comment to me: "They're going to tell you she has colic, I'm going to tell you it's her personality."  I was infuriated at the time.  The more I came to read on colic, the more I wondered about this.  Colic, for most babies, kicks in at 3 weeks.  Sophia was born screaming, even managed to get herself kicked out of the nursery in the hospital for waking the other babies!  She went straight into teething at 3 months which we blamed for the fussiness as it continued past 3 months.  Sophia had an occasional social smile, but not often.  Her lack of smile (a key to early autism dx BTW) made me call my sister-in-law while shopping at a department store one day after running into several other babies Sophie's age who appeared much more engaging.  My SIL assured me that she was likely fine, and dropped off a book on child development that she had.  Sophie met all her other milestones fine.

One day while attempting to cook dinner for my husband (which I rarely did since Sophie seemed to take up all my time and still does if I let her) I gave Sophie a pot and a wooden spoon to play with to keep her occupied.  After a few minutes, I looked over and noticed that she had taken all the lids of the pots out of the cupboard and had line them up, sorting them by size.  I remember thinking, she must be really smart to do that already, but also thought, this is a little odd.  Besides Steve, I didn't mention it to my other friends who had children Sophie's age, it felt a little weird.

I was lucky enough in our old neighborhood to have had 2 other first time mothers who also had "colicky" children.  It was great fun the first couple of years conferring with one another on our kids. They seemed to put my mind at ease, that there girls were colicky too, it's just what happens sometimes.  We had playdates as time went on, and Sophia was definitely the most active kid.  New neighbors who had a daughter Sophie's age would always comment things like: "that's Sophie", "and then there's Sophie" regarding her very active behavior. 

Sophie has currently made friends with just one girl in her class.  Sophia will not socialize with the other kids.  This little girl is new to the area, and doesn't have the preschool under her belt that Sophie does.  She also has been pretty isolated from other children.  I am really concerned that their friendship is not based on mutual interests, but rather, both feeling like the odd man out at school.  Sophie tells me that this little girl loves her.  The little girl has made remarks on how pretty Sophie is with her long blonde hair.  I am feeling a little uneasy about this remark, and others she has uttered regarding race.  They are a little strange.

I really want lots of positive influences in her life right now.  She needs a lot of opportunities to figure out how other kids play and relate.

But Sophie is still Sophie.  Her verbal ability has always been ahead of the curve.  She has a mix of rote, echolalia type phrases that she applies to situations as she sees fit:

Nothing like the countryside to light my fire.

And unique and highly applicable metaphors:

Daddy is the strong man in this circus.

Those of you who are on facebook have likely read some of the ones I have captured.  Anyone who has spent time with her has likely heard them for themselves.   Many children this age say terrific things - Sophia definitely has a knack, enough that I am trying to compile them and see what might come of them one day.

Sophia has never really played with toys "appropriately" according to the experts.  Parts and pieces were always cannibalized into something else.  Her one sitter said that she thought Sophia was fascinating because if you gave her a couple of cotton balls she would be engaged in activities the rest of the day.  Form and function as designed has sometimes little interest to her.  She will make it into something she sees as more formidable. 

Because of this adaptation of the rules to Sophie's rules, game playing is particularly difficult for her.  She rarely likes to play board games (Chutes and Ladders, Candyland., etc.) and we have to force her through them.  We recently played Trouble, and she just wanted to take the little board pieces and stack them and Lord knows what else she was doing with them.  Oddly enough, several months ago I sat down with a Chess board because she asked me to.  Steve and I were stunned after going through some of the moves with her that when it came to her turn she recalled and moved her pieces appropriately.  We went through a whole game ( I think she even won) and then she went and played Sophie's Castle with the chess pieces.

She is a great kid.  Zach is lucky to have her, and she loves him too. 

Sophie can't handle loud noises of certain frequencies very well  such as Zach screaming or thunder or fireworks.  Currently, she does listening therapy to help.  Oddly enough, she likes really hard rock - like AC/DC, Metallica, 95X (for my fellow Syracusans) type stuff.  How many little 5 year old girls prefer hard rock?

She definitely stress tests us, but everything about her tells me that she is going to do great things one day as long as we don't let anyone squash her spirit becuase of her uniqueness.  I love my little metal head.

Spent some time at school today

Went to Zach's school today - crazy crazy environment.  I don't think I could handle the daycare/preschool thing for my career choice.  I am so concerned that Zach is getting all that he needs.  He definitely needs more one-on-one than what he is getting.  He needs to add in a therapist in the afternoons, evenings, and/or on weekends.  I think going to school is good for the little bugger, exposing him to ritual, expectations, and peers, however, he still needs skills and the 1:1 will give him the skills to thrive in this environment.  A call has been placed to another lawyer to discuss.

Zach is back to being in love with me.  He gives me these long kisses, and asks me to hold him and to be in my lap.  Now, mind you, he does this without words, but I know, and it is obvious to everyone around him.  Sometimes words aren't necessary for communication.  For instance, ask my therapists from our home program what Zach's favorite color is - they will tell you green.  I know that too.  Just witnessing what he is drawn to I guess.  I think it is becuase his favorite lovey (baby blanket) is green. But nonetheless, we all know it.

I can tell Zach is a kind child, he will never intentionally hurt anyone.  He appears very cognizant of this fact - purposely avoids situations where danger might be involved and I noticed that when in a shoving match with his sister, he only shoved her when she was laughing, and when she stopped, he stopped too. The few times he hurt me and I gave a loud "ouch" he immediately stopped.  He doesn't have any self injurious behavior right now, and although he likes physical sensory input, he appears to understand that if another person is involved, he needs a soft approach (he cuddles a lot).  His more aggressive cuddling seems reserved for me. 

The little bugger filled in some words while we sang tonight.  Haven't done that in awhile. (You are my "sunshine", my only sunshine, you make me happy when skies are "gray")  He also said "I'm awake." this morning after walking into my bedroom. Where is this coming from and how do we get it to continue?

A recent change in stats at the CDC now give the rate of dx for autism at closer to 1:91.  Many say that a broader diagnosis criteria and better tools to screen and diagnose are the reason for the increase.  Another point made is that several children dxed later fall off the diagnosis, some say due to treatment and some say to an improper initial diagnosis.  The interesting thing about the initial CDC studies is that they are conducted on 8 year olds. This gives ample time for those children who will likely lose their dx to do so.

The question I like to ask is - where are all the 45 year olds with autism then?  Now a recent British study indicated that their survey did show a 1:100 rate of adults age 18 and up.  However, the sample size is very, make that extremely small, hence, this is by no means left unfinished.  In fact, they only found 19 out of the initial survey of 7,461 - which works out to .25 %. or 1/4 of a percent.   They then extrapolated the numbers which is not a real survey, and statistically invalidates the study.  I don't want to bash the survey - but it is extremely limited.  If it is in fact true, it would actually make me feel a bit better - that would mean that there are a lot of people functioning in society today without dx's. 

Getting back to the original report:  1:91 would have meant that there were approximately 5 kids with autism in my graduating class from high school- that was before inclusion - so I guess I might never have seen these individuals - they were neatly tucked away either at institutions or programs that kept them out of typical public school systems.  

I am thinking about that genetic thing now - neither Steve nor I have a relative that has a diagnosis of autism.  Are there members of our family's that would likely qualify?  Knowing Steve and my social awkwardness and, at times, imbalance, would we be considered autistic?  Things don't appear to totally line up.  The numbers seem higher, and in my experience, I know way more people with a child with autism than my mother ever knew of her friends. (A childhood girlfriend's son, a high school girlfriends nephew, 5 people from work with 7 kids on the spectrum, a neighbors son and of course all the families I have met in support groups and advocacy work.)  Maybe people didn't know back then, and furthermore, didn't talk about it when we were younger.  Does it matter if rates are higher?  I suppose if they truly are increasing, we might want to find out why.  But shouldn't we just find out why these kids get this anyhow?  1:91 is a whopping number whether it is precise or not.  It's still a higher rate than childhood cancer, diabetes, AIDS combined.

I still have yet to discuss in the blog the meeting with the school district.  I get upset just thinking about it so I probably will have to wait a bit more.  I cannot throw him under the bus like they want me to.  So sad.  Will not let it happen to him.  This meeting definitely contributed to me feeling like I don't know who to trust lately.  He is a little child - how can people be so flippant about things that affect his life?  Even if you hate me - do you take it out on my kid?  That sure does seem evil.  So why is this not just an automatic to get him what he needs?  Why does it require so much turmoil?  Why is my story one of many variations on a theme?  Do people really want a label on their kids?  Do they really want all these services for the fun of it?  *sigh*

Is this Syracuse or is this everywhere?  Are there areas where we wouldn't be having the difficulty?  I am ready to move if there are...

Happy Birthday Zachary!

My beautiful little boy turns 3 today. The pictures are
from yesterday's family birthday party which was a good time.
 
Daddy was master chef and made a wonderful presentation of homemade subs, homemade potato and leek soup, taco dip, and a wonderful GFCF cake.

Top presents included match box car sets which he seemed to enjoy as much as the typically covetted Thomas the Train selection.

Zach has yet to get the concept of opening his own presents.  We tried to model and he sort of tried, but was too interested in the last opened present to realize there were more coming his way.  Sophie was eager to oblige and gave Zach a hand not only unwrapping, but testing to make sure the toys operated as expected. 

Yesterday started off with a fundraiser walk for Autism Speaks at Longbranch Park.  Sophia proceeded to have a double sensory meltdown while there.  The organization is not one of my favorite for a few reasons.  They are terrific fundraisers, having made $19 million from this walk alone so far. Autism Speaks is well known by its creators who are grandparents of an autistic grandson.  However, when the mother of their grandson started to reveal in her belief that vaccines may have contributed to her son's autism, and in biomedical interventions,  the grandparents quickly dismissed her.  This has always made me so sad.  But this is not the reason the organization makes me weary to recommend them as wear to put your charitable dollars.  Almost none of the money raised by Autism Speaks reaches families, like us, desperately in need to fund programs and services for their children.   A majority of their funding goes towards research, which is great, although they are extremely skeptical and stick to very "safe" research areas that feel like they produce very little information that a parent can use for their child in the near term.

I don't mean to bash them - autism awareness is a lot more visible now than ever before, in large part due to AS, and is important to me and likely countless other parents and people with autism, and this awareness should not be taken for granted.  They just seem to roll in quite a lot of cash which doesn't seem to make its way back to families struggling with the financial burdens of the disease. 

If you are interested in making a donation that can help families more directly, I would recommend finding a local FEAT group in your area.  Families for Effective Autism Treatment is a not-for-profit organization of parents and professionals founded to support families of children.  There are likely other groups that do similar efforts, but this is one familiar to us here in CNY.  

So let's make this next year awesome for my little boy - lots of progress, lots of smiles, and lots of love.  Go get 'em Zachary.

Being able to see the changes

I spoke with a good friend yesterday. We have known each other since 1980 I think? I am sure she will let me know - she has a terrific memory. I spoke with her for quite a while, about life, life's problems, and even a few of life's joys. Guess what we didn't spend hours talking about? You got it. Autism.

I realized this after the phone call ended. We just didn't go there, at least not much. M. has a son with autism - had we already covered all the bases? Did I feel she 'got it' so I didn't need to go there? Am I on autism burn-out and want to quit being a bore? Yup.

Changes. There are some that are hard to recognize because of their subtlety, but that doesn't make them any less significant. Approaching the one year mark of Zach's dx, I am occasionally remembering a year ago and what that felt like. Not good, that's for sure. It felt like the walls were caving in, and that stakes were going through my heart, that I was walking on coals, and watching the world around me shatter at the same time.

We have lived through this apocalyptic storm. Somehow. I am not the most accepting person, I am not the greatest fighter either, I am somewhere in the middle. Some of the fear that I feel is not just what is happening to Zach, but it's if the paths that I am pursuing to help him really are worth going down at all. Keep in mind that I have to fight like hell to just be able to down those paths, and sometimes along the way, I may realize they aren't right.

Zach is not the verbal kid I was hoping for. He still doesn't readily respond to his name, nor does he always point when he gestures. But he does say milk, bye, juice, jump, hug me, and many more things. Granted, a lot of these words come only when prompted, but guess what, sometimes they come with Zach's will alone.

A year ago, when we had company come to the house, Zach screamed. I mean, yelled continually. He would warm up eventually, but not after putting me and Steve through a bit of torture first. Now where is Zach at? Anyone who saw the prayer service realizes he loves the excitement of people around. He was so wound up when people were over the house, it was hard to get him to settle for bed afterward.

A few weekends ago, Zach's uncle and aunt came, with some trepidation, and picked Zach and Sophia up. They took them out to pick apples and to lunch (we provided the food for Zach). We really didn't know how things were going to go. He certainly was adapting to new situations and strangers better than ever before, but to be totally away from us? The outing was a complete success - Zach didn't peep once! It was terrific.

Transitioning to new environments and letting others work with him and play with him is a huge step for Zach. Subtle, and easy to forget how he struggled with this for awhile. I think of this change often. I have to.