It's Not All Bad: Request for Donations

CLICK THE RED HOUSE TO DONATE TO FEAT OF CNY!!! THANKS!!!

If you are still reading this blog, after all the rants, raves, and frankness, then you likely don't hate me or find me totally annoying. There is the odd chance that you do hate me and read because of a delight you take in my struggles, which would likely make you diagnosable in some taxonomy or another of the DSM. I'm kind of banking on the fact that most of my readers are rooting for us and not looking forward to our demise.

I often wonder how many people in my life are trying to help versus who are just doing the base minimum in order to state that they are helping. I am pretty tough on my family. Yup, I know. If you haven't figure out this by now about me, my expectations are, well, a little on the demanding side. I become downright argumentative/judgmental when my requests/demands are not met to my liking. And that happens a lot.

I try to keep in mind that they likely don't mean to hurt me. But I guess that when I tell them they are doing as much, and they refuse to accept any responsibility in their actions of making me feel that way, well, I become disgruntled. But there are several occurrences where they brought me joy - and I am not sure if I ever relayed that.

Now as much as I complain about my kinfolk, I do love them. And they aren't all out evil. In fact, sometimes they can be quite charming and even amaze me with their kindness. Recently, Zach's godparents began watching Sophia and Zach on Saturday mornings so that Steve and I could participate in training runs.

Steve and I will be running in the 33rd Annual Syracuse Mountain Goat 10 mile Run on May 1st. We have been training for the run and are running it in dedication to those affected by autism. We are asking those who want to support us to make a donation to Families for Effective Autism Treatment a local non-profit group that provides resources and support for many families affected by autism. Please consider donating to this terrific organization - they accept credit card donations - and let them know it is for the Mountain Goat run.

Anyh0w - the training runs have been on Saturday mornings at 8 am downtown in Syracuse. That meant having a sitter at our house at 7:30 am in the morning on their day off from work. And Cathy and Mark, without my asking, volunteered their time to us. It has meant the world to me and has made a difference in my disposition, because this is exactly the type of support we need. 1) I was able to get time with my husband doing an activity we both enjoy. 2) I was doing something healthy for myself. 3) I was getting out of the house that I feel so chained to otherwise, and 4) I was getting a break from the kids!!!


Aunt Cathy and Uncle Mark also had us over for dinner during Passover. It was so pleasant.

As for the rest of life: Zach's base paraprofessional (therapist) has left and we are once again scrambling. I have found partial replacements but there always seems to be issues of one sort or another. I have yet to receive the old data from a previous teacher which may create a problem if we don't get it soon because in order to qualify Zach for summer services, we need to show regression of skills from periods when Zach did not receive therapy (vacations, breaks, etc.) . If we don't have the data that may pose a problem. We attempted neurofeedback with Zach last week. The session was a struggle, and I noticed absoultely no changes in Zach, so we may revisit, but for now, I think we will be passing. Zach starts play therapy this week a to the tune of $60 a shot. Yikes! He would have been working with this therapist for free had I not been dimwitted enough to pull him from his preschool program. *sigh*

Sophie's test results are in from school. She is fantastically average according to the tests. According to observers in her classroom, she has some issues. So what does it mean if you test well, but in the academic environment, you have struggles? We'll find out - Sophie's meeting with the school district special education department (CSE) is May 10th. The fun just never seems to end!

So please do consider making a donation to the great organization I cited above - any amount is appreciated! They have done a lot for our family and others. How many times can you give money to a charity and absolutely know it is being used wisely? I can assure you, this is one of those times.

And as for Tuesday April 19th... Camelot

17 children. I think. I don't know. And there were many of them on the spectrum. How many? I don't know. All I do know is there were a crowd of people at my house. There was confusion. There was pizza sauce on my walls and good couch. There was happiness. There was even a striptease. And I loved it.

It brought me back to Sunday dinners at my mother's house. It thought back to the holidays of total chaos that I adored. I am the youngest of 4. My siblings all basically had children at approximately the same time - my one sister through foster parenting and eventual adoption of my beautiful niece. I was a kid during this time.

But I loved the fact that amongst the chaos, one Christmas the torn wrapping paper in my mother's living room must have measured 2 feet high and one of the kids was walking around with a bottle of scotch meant for someone else. There was laughter. There was such joy.

Family gatherings haven't been quite the same for us. We have the only young children in the family right now. And then, Zach doesn't quite put on the show like expected. I feel that we let others down; they go out and get these presents that we have to entice Zach to open. He doesn't show the reaction and gratitude of his sister. It took us so long to get him to understand to take the paper off. Now, he just rips with abandon,sees the surprise and tries to figure out what it is and what function it serves.

But then there was this past Christmas 2010. He finally showed interest in opening up his own presents. I cannot tell you how stinking excited I was. It's one of those things you just take for granted if you don't have a special needs child. And then it happened. I was pulled into a bathroom - pulled away from watching one of my son's precious moments. I was told a story of abuse and pain. My son's moment continued, and I wasn't there to watch. Cousins and aunts and uncles were there, but they didn't understand the significance. I only have so many of these moments, and someone selfishly took that away from me. Yes, this person was in pain. No, I didn't cause it. Why did they have to choose that moment to tell me? Why couldn't I just have that one freaking moment of joy in my life. All our joys are so hard fought for. Why does everyone continue to expect me to solve their problems? Can they not see we have ones of our own, ones that I cannot handle?

That's family and autism. You can watch me as much as you want. You can even say you love me. You can watch Zach. You can read my words. But, my heart is only understood by a few others out there. This is a case where blood being thicker than water does not apply.

It's so hard when I see a newly diagnosed parent going through this. It breaks my heart, it hits so close. It makes me relive that place all over again. I had some friends over the house today with kids the same age as mine, but neurotypical. They are so flippant about things involving their kids and what we are up against. I realize there is just no way to describe the heart of a mother when faced with things like which preschool to choose for your nonverbal child. You just have to live through it to understand the pain, the torment, the guilt, the fear. It's so freaking unfair. I feel so connected to all my fellow ASD mothers that barely know me because no one else will ever understand, it just isn't possible. Just us. Connected by that weight on your chest that never seems to go away, that nightmare that you never wake up from but get used to facing.

Part of that nightmare is that of the ever-disappearing family. (I stole that from a facebook friend.) I was always so proud of my family. I knew we weren't the Waltons, but I really felt like I was dealt the best hand possible. I had two parents who loved each other, siblings with nice spouses and beautiful children. We got together at holidays, on Sunday's at my moms, for birthdays, and sometimes just to get together. I always felt like if I really needed them they would be there for me. The fact is, I was fiercely independent and really didn't need them much for many years.

And then there was diagnosis. These past few years my life has felt like a round of musical chairs, where I thought I had the last one, and it was pulled out right from underneath me. The thing I always valued so much in my life felt like it was an illusion. I could see them, hear them but when I went to reach out to touch them, I reached right through them. I cannot ever begin to tell anyone how hurt I have been over this. And I am sure my family would tell you how much I suck if you were to ask them, and they would probably be right. I do suck. In so many ways I cannot begin to count. In so many ways I never knew, until I had this little life that depended on me for so much and I began to fail him.

So where are they for him? Hate me, turn your back on me, but my kid? I just will never understand that. Why won't they spend time with him? Visit him? What about Sophie?

Let me say that Zach's grandmas are top notch. If there were ever two women who loved their grandson - it is them. And for that I am so happy. But those days of family get-togethers, with laughing and games and sharing, yeah, my kids won't be having much of that with my family. They can say it is because they don't have kids my own age, and that is probably right. But I was a single teenager, twenty something year old, without any children, and I made a point to spend time with all their children.

There were movies, museum visits, camping trips, the zoo and endless sleepovers. I don't think they remember. I think it must not have meant to them what it meant to me. I love my nieces and nephews almost as fiercely as my own kids. I miss them. No one wants to visit hysteric Aunt Leanne. I guess I probably wouldn't want to either. But my mother and father didn't raise me that way. You visited whether you liked it or not. Family was family and we supported one another. I think about the hospital visits, or the nursing home visits, cleaning at great Aunt's house who could no longer do it herself, the endless birthday parties, car rides that took forever to the south to visit people I felt I didn't even know but I was told were my family. Kiss them, hug them. This is your blood.

I am not angry with my family. Anymore that is. Maybe that is part of this acceptance thing I keep on hearing about. But the facts still remain the facts. And my wants and desires still remain too.

So I had a surrogate family over. With their own weird kids like mine. Ones that wanted to be around me and my kids. They appreciated my offerings, tolerated my personality, asked me how I was doing and what they could do to help. Little did they realize that by trashing my house and then helping to clean it up, they gave me just the medicine I needed; the gift of their time, the gift of their presence. For one brief moment, I wasn't alone in our journey. Camelot?

Today's Snowflake: Cody

The Snowflake Project

Child's First Name CODY

Child's Age 9

Diagnosis Autism, ADHD, ODD, Anxiety Disorder, and Sensory Processing Disorder

Age of Diagnosis Autism – 3 years old, Sensory Processing Disorder – 4 years old, Anxiety Disorder – 5 years old, ADHD – 6 years old, and Oppositional Defiance Disorder – 7.5 years old

Family Description Momma Bear, Papa Bear, Big Brother Bear (16.5 years old)......and mini dachshund Snicker, baby kitten KitKat, Turtles Onion and Olive, and Nemo 1 & Nemo 2 goldfish

Age Symptoms First Appeared/Noticed Doctor saw signs early as 6 months. At 18 months, he stopped saying new words. Stopped looking at people at age 2. Easily frustrated at ages 2 – present. Noises bothered him since early baby days. Stopped being able to wear “normal” clothes at age 5. Brain started “talking” to him at age 5 ½. Couldn’t eat “normal” food until at least 3 years old (no meat until 6 years old). Would gag on almost everything.

Symptoms of Autism Social awkwardness, don’t like to look into other’s eyes, easily frustrated, lined toys up since a very early age, rocks back and forth when upset or frustrated, memorizes and repeats commercials and/or movie trailers, lack of appropriate humor, lack of ability to “make and keep” friends, bounces up and down when nervous or excited, screams when can’t find the words to say, runs away when feelings become overwhelming, can’t talk about his feelings, plays with fingers and claps hands as stimming, change in routine is TERRIBLE!, needs precise rules and be reminded of the rules frequently, etc.

Child's Grade Level in School 4th grade at Special Education Boces School

Types of Services Child Receives Cody goes to a special education school where he is striving. He receives Occupational Therapy 2X/week, Speech 2X/week, Counseling 2X/week, cognitive behavioral therapy weekly, social skills group

What Treatments Have Been Most Beneficial for Your Child Cody is on medicine. I am not a “medicine cures all” kind of person. I don’t want a medicine to “take away” all my child’s “issues”, as I feel that he needs to learn to “deal” with the world as best as he can. But on the opposite note, I have no problem giving him a low dose of a medicine that can help him control his anger and aggressions. and that can help him control his impulses and be able to sit and relax when he wants to sit and relax. We have finally found the right mix of medicines to allow my Cody to flourish. And the weekly appointments for his cognitive behavioral therapy have done wonders with helping him overcome his phobias and fears of the unknown. My Cody is back!! I sure did miss him!

Co-morbid Conditions ADHD, Oppositional Defiance Disorder, Anxiety Disorder and Sensory Processing Disorder

Please check out Cody's video by clicking this link!

What would you like the world to know about your child?

My Cody is my world. His smile can light up any room. With a little patience and understanding, he can be one of the most sweetest and loveable kids you’ll ever meet. He has a heart of gold and wants so hard to be liked by everyone. He doesn’t always make the “right” choices, but he’s just learning to take the consequences for those choices he makes in life. LOL. He loves to draw (and he is an awesome artist), read (he’s been reading chapter books since he’s been 5 years old), and play with his Nintendo DS. He is totally obsessed with POKEMON and can talk about them all day long if you listened. Of course, he doesn’t understand when someone doesn’t want to “listen” anymore about his Pokemon stories, so he keeps on going and going and going. He is a good boy. He is on a few medicines right now that have made an incredible change in his behavior. He is starting to talk more about other stuff than just that of what interests him. He is more “calm” and is such a better friend. He is working so hard on not running when he’s upset, but rather to use his words instead. He is such a quick learner. He loves school and loves to be loved and wanted. HE IS LOVED AND WANTED MORE THAN HE COULD EVER KNOW!!!

The Snowflake Project

It's April 11 and we are expecting temperatures in the mid 70s. But when you live in Syracuse NY, you just never know when that snow might hit again. Indeed, last year on Mother's Day, we had a dusting. Although the snow might not fly again outside for a few months, there's some other snowflakes I would like to concentrate on.

In order to try and get Zach's needs met, I have taken on the best approximation I can muster of what the world looks like from Zach's perspective. In this process, I have focused on his symptoms of his autism and attempted to determine what may be the cause of these symptoms other than just letting this mystery blanket term "autism"be the answer. Through this lens I have built, I realize that I sometimes forget that this is Zach's version of autism, and no one else's. I am now cognizant enough to realize that I need to take my filter off and be open to all the possibilities when talking with someone whose child also has autism, as they, too, have their own version.

Much like myself, I have found that a lot of people tend to define autism by the one individual they may come into contact with that has it. From my realization that this just aint so, I have to chuckle at the very true tone of one of my favorite quotes : "You KNOW one person with autism, you know ONE person with autism."

I am attempting to create a series of profiles of children that describe how unique each child is. I have begun to ask parents to provide me with brief narratives describing their children in the form of a template. I am hoping this brings some awareness that each child is as unique as the snowflakes that fall from the sky, and should be approached as such. I am also hoping that this allows some parents the chance to express what they want others to know about their child than can't be done in a fleeting conversation or quick glance.

I will post these profiles - perhaps at rate of once a month depending on how many I receive.

If you would like to participate, please download and fill out the document located at this link and make sure to add in your city/state to your response.

Forsaken

We have been lied to, cheated on, and taken advantage of so many times since we started down this path, that I am numb to the inequities and unfairness of our situation. And I will reiterate, Zach is not the problem. Zach is wonderful. People treating our need as if it is something they can take lightly is the problem.

As much as I am grateful for help - I do not like the lack of professionalism I feel that we have been forced to accept because of our situation: there are those who are paid to assist us who show up late, leave early, miss multiple sessions, text during sessions, show up unprepared, don't do what they say they are going to. I have always tried to be fair and understanding. But all this latitude I have afforded people has created much too much a comfortable environment - and people, purposely or not, took advantage of that.

As "smart" as some say I am, and as much as I know what my son's needs are, that just hasn't managed to equal that Zach gets what he needs. Initially I thought it was my stubbornness getting in the way, my difficulty in asking for help after many years of being fiercely independent. Autism has definitely taught me to ask for help. When it turned into pleas for help, I realized that my stubborness was no longer the issue.

I understand that I have a strong personality, and I realize looking back these last few years, that I have tried to compensate for that. I have accepted poor performance and inappropriate conduct to neutralize my particular negative ways. I feel terrible guilt that in an effort to make up for my faults, I may have jeopardized my son's future.

It has been a particularly bad week here. Steve just realized two days ago that our main therapist will be leaving in two weeks. I am not sure how he didn't know this other than there has been so much turnover and confusion, and he has been in the midst of major deadlines at work, that he just didn't hear. Zach is getting bare minimum services right now. And his latest special ed teacher has no experience with kids on the spectrum.

On top of that - we are currently in the process of determining if Zach may have Lyme disease. This has required testing and administration of many rounds of antibiotics which has me growing weary. As discussed in a previous post, hair cuts and dentist appointments are two particularly difficult tasks for some of our ASD kids, for which I can personally attest, and taking 6 doses a day of medication, each one a struggle, pure torture for both me and Zach, is yet another common difficulty for some of us, too.

Yesterday, after an hour of unsuccessful attempts, and the clock ticking as the time to get to an engagement clicked closer and closer, I lost it. For the first time ever, I yelled at Zach. I couldn't calm down. I was so upset, so exhausted, so resentful, I couldn't believe it. But he couldn't help it either. Some of it was his refusal to comply, but I keep in mind that he does not have good receptive language; he does not understand that it is something to do with his health- I cannot get that information across to him, so why would he comply?

In the end I became totally ashamed that those people who I should have been yelling at received my patience, and my beautiful son who deserves nothing but total compassion and every ounce of patience I have, likely received their portion of my frustration.

Trudging through mud again.

This one's for you Aunt Cindy

Haircuts. Yep. Another thing you likely take for granted if you have typical children. When I was still working, Sophia had seen an advertisement at Nana and Nono's house (her surrogate grandparents who watched the kids while I worked) for a place to get a haircut. They had a little jingle that she used to sing it all the time. I remember thinking that my kids were getting exposed to the advertising on TV which since we were diehard PBSers and DVD/VHSers - hasn't managed to make it's way into our house to tell us how inadequate we were at just about everything in life. Like I need reminding, ya know? But you know, not all advertising is about sucking every penny and ounce of selfworth out of you. Sometimes it is just that - letting you know they exist and could be a service to you.

So finally, as a reward for something, I told Sophia we could go to this place called Snip-Its "where a haircut is just fun". And a haricut likely costs a pretty penny too. Here we are a couple of years later, and guess what. We are still going to Snip Its.

Kids on the spectrum (depending on symptoms) frequently have trouble in a couple of places in particular - the dentist and the hairdresser. We managed to hit both of these troublesome places within a week. Hurray for me.

This past Christmas, with time being the biggest constraint, I decided to try Super Cuts for convenience's sake. Aunt Cindy joined us - and likely had no idea how agonizing this venture was for me. I won't go into too many details - here are a few recollections that made this event particularly memorable:

- I walked into the storefront and asked for the bravest hairdresser in the joint. A girl actually volunteered.
- At some point, other children there were making comments like: "Mommy - is she hurting him?"
- Her tip was as big as the cost of the cut itself.

So back to Snip Its we went. And even though it is considerably more expensive, it was worth every dime. Oh yeah - and for April being Autism Awareness Month they actually knocked off $5.'

The reason this placed worked better? I have a few ideas. First off, he's been there before and understand the expectations. Secondly, there are a lot of distractions, fun decorations, a train table, television screens playing animated movies. But a good chunk of it was having a professional who took the time to learn a bit about our kids, accepts them, and has come up with a few tricks to ease some of the issues. One trick was that she let Zach hold the sheers and feel the vibration. The other thing is that she is firm. All in all, I always appreciate these people who go out of their way for all the right reasons.

Isn't he cute?

Temple Grandin had a mother too you know

Not really sure who my audience is but if you are involved with someone with autism, you likely know who Temple Grandin is. For those of you who are not in the know, Temple, or should I say Dr. Grandin, is probably one of autism's most famous celebrities. An HBO movie about her life won 7 Emmy Awards. She is a sought after speaker, has written several books, and has a career as an animal scientist. She made it into Time Magazine's annual list of the 100 most influential people in the world. Diagnosed fairly young back in the 1950s, prior to anyone having much knowledge about autism, Temple is one of those success stories that a lot of us parents cling to. Not only did she gain speech late, she went on to college, and even completed a PhD. She is far from the most "high functioning" (uughh I hate this terminology - perhaps a later post?) person with autism you have met - but she is probably one of the most accomplished.

But I am not here to talk about her. I read the books, saw movies, watched videos, read commentary. You can do the same. I had a picture of who she was, and one painted by herself inher own words. What I never knew was what helped to create this very admirable person? Who was this person's parents?

I had the opportunity last Friday to find out for myself. Eustacia Cutler - the announcement came out that she was coming to the area to speak, Temple's mom. "Temple is now 63 " years old herself - one of the other mothers who I mentioned the conference said to me. "Her mother has to be about 90!" went on my friend. As if a person of that age might not be able to impart some wisdom. *sigh*

I'd be lying if I said I hadn't thought about her age. And she knew it too - when I use the cliche sharp as a tac - I don't mean for an 84 year old. This woman had game. She knew we were all thinking about her age too - that's how I know how old she is - she said very early on in her presentation "let's just get this out of the way, I'm 84". This woman was articulate, bright, engaging. She did not paint a picture of sticky sweet scenarios. She told of the difficulties - then and even a few now. She did not complain, she just cited the hurdles. She still, regardless of all that she and her family achieved, stays on top of the most current research. She was incredibly real. She did not give false hope. But she did, in her own way, talk about the power of determination and persistence.

So many families I know whose children "lose their diagnosis" or become very high functioning turn their backs on the rest of the community. This is one group (the autism universe of those affected by ASD) that as happy you are to have them to help you through, a lot of people are more than happy to no longer need to be a part of. And that is a bit of a shame.

I am looking at purchasing Ms. Cutler's book to add into the ol' library. I do not expect it to give me answers, just add in some perspective. People are always looking for heroes to save them from lives woes, and I can include some families I have met on the ASD journey. They rely on the system; doctors, specialists, teachers, therapists to make the difference. Is it bad that I am trying to be my children's own hero? But like anyone who accomplishes anything knows - that needs to be with the help, and in this case with all those previously mentioned folks.

Take a look at Temple at last years TED:

Sophia's Spring Line

Here is the preview of Sophia's spring line of clothing choices ... While you may think I am being a braggart by showing off my beautiful child, this is actually an example of creative parenting. Sophia has hypotonia (low muscle tone, note: not weak muscles) and fine motor skill issues making disrobing and dressing difficult for her. On top of that-she has these sensory issues, she is very sensitive to noise and sounds - going to a store with loudspeakers, screaming children, and the flicker of fluorescent lights puts her on overload mode. Getting her to try clothes on in this environment, let alone at home, has always been a challenge. So what do I do? I appeal to her vanity. :) We had music playing and I had the camera out snapping away. Mind you - we don't have cable so how she would know what a catwalk is - I just don't know! Seriously - it was just a really fun and goofy thing to do - and she loved the attention Zach, Steve and I gave her (that she deserved I might add.) She tried on every single piece of clothing! HURRAY! And now without further ado, I present to you Sophia's Spring Lineup....