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.