Fathers

This past weekend was Father's Day. We were invited off to Geneva Lake to spend the afternoon with my brother and his family as they rented a home for a week on the lake. Driving and hour and half each way was likely not Steve's idea of how he wished to spend his father's day. I felt bad, but felt this event was a nice offer and we needed to get away, even if it was for the day.

Steve was given the mundane presents of sports socks, a lunch box and a new cover for his grill - and the extra special surprises of a pencil holder with pencils from Zach and a coupon book from Sophia. The coupons included one for a hug and one for helping with the dishes (although she mentioned that she would need help with the dishes.) These little surprises put a smile on my face. I realized there are no gifts great enough for Steve.

I don't really talk too much about our relationship. It is strained for sure. But I know as much as it is strained, he is doing the best he can, and it actually is quite a lot. Steve is a pretty stoic guy. He does not throw compliments around, he doesn't act silly, he doesn't recount his childhood. What he does - he keeps us first in his thoughts and his deeds. He works his butt off at his job to make sure he can provide for us and just last week he received yet another award for his commitment to his work. At this point, he has a wall of them. For all his hard work and effort at his job, he has still managed to be a big part of our family. He does a good chunk of the cooking and is home nearly every night before the kids go to bed. He brings Zach to school, takes Sophia to soccer practice, and occasionally grocery shops.

I know that my heart is that of a mother, and I feel the urge to foster and grow my children. I also know that a father's heart is different, and the need to protect, provide and strengthen is on his shoulders. The world can be cruel, and I am sure that is one of the biggest concerns that Steve has, people being cruel to his children. Indeed, before we ever had children, let alone one with a disability, Steve was concerned about this. Steve and I are geeky sensitive types. This pretty much can make you a loser in a world where we have witnessed people laugh at other peoples pain, insecurities, weaknesses, failures. Steve is an incredibly capable person. He makes things happen that others can't. He is very smart, hardworking, and caring. I have always felt he could accomplish great things with this eclectic combination and he has. Steve is not the huggy touchy type, he doesn't say a lot, but he is hugely demonstrative in his commitment to his family and his obligations as a father.

Both of our fathers are no longer with us. This is hard for us. No one to show us how to swap out a faucet, play ball with the kids, all those grandfathery sort of things. I am sure Steve misses his Dad as much as I miss mine. We sure could use them. Sophia has begun to ask a lot of questions about her grandfathers. I can speak only for my Dad when I say that he sure would have gotten a kick out of her. And she sure has missed out on meeting a terrific guy.

I lost another father in my life about 2 years ago. The priest that married Steve and I was my childhood priest. He was very special to me and many others. When I lost my Dad, Father Champlin's sermons took the place of the words of wisdom my father once delivered. Steve enjoyed him as much as I did. I remember one of father's sermons where he asked people what a heart looked like. Some gave the symbolic description of red symmetrical shape, others thought of the more physical muscle with valves and ventricles. Father Champlin held up another representation; a donut. He said that the desire for love is filled through our relationships to others, and fills the donut and tightens that hole. We pursue closing that hole with friendships, marriage, and children. As much as we love others, and are loved by others, that hole never closes. He went on to explain that the hole can only be filled with our relationship to the Divine. When he died, that hole opened up a bit.

And last night, I said my farewells to yet another father. Father Michael, the priest who said the prayer service for Zach, will be leaving for a new parish where he will have his first chance at pastorship. He had dinner with us last evening. This has been pretty difficult for me as I am loosing my spiritual advisor through this journey. I also feel like Team Zach is down one right now.

I am grateful to each of these men and their contributions to our family. I am sad at the losses endured when they went away, yet grateful that they were once in our lives. I hope each of these men know what they mean to us. I hope that Steve knows that our lives are better because of his dedication to us and we are so happy to have him as the rock in our foundation.

Mud

All day yesterday we went between rain and sunshine. It was crazy. Steve had to work late, which left Babcia, Sophia, Zach, and I to take care of business ourselves. After dinner, which involved rice, which meant it involved a huge mess, I was set to throw the kids in the tub. Zach darted from the dining room table, with me chasing and watching all the little grains of rice getting tracked through the house. uugghh

He than ran into the mudroom and gestured towards the side entrance door and said "G'outside, play". I was flabbergasted! I said "Of course we'll go outside and play!" and called for Sophia to come join us. In that moment after, he then grabbed my hand and pushed it towards his shoes, and said "shoes!" to which I responded with "Let's get shoes on!" And I promptly did so. We opened the door only to have our neighbors cute puppy run in our house adding to the craziness of the situation - of course he was hard to get out - there was food on the ground! (mostly rice) so why would he want to leave! I grabbed a few peas and got the dog out the door. Sophia came running out to play with the dogs.

It just happened that a couple of the neighbors were out for walks with their dogs and they were off their leashes. At one point, one neighbors dog mounted the other. Sophia saw this and said:

"Those dogs are getting all friendshipy"

Then little Zach went on his little obstacle course. We are in the process of redoing the landscaping and painting the house - and he loves that he can hug the edge of the house without those pesky shrubs, flowers and bushes to get in the way. And then he discovered that where Daddy had pulled out a big bush there is now a big puddle. And boy did we get a bath later on.

Please click on picture below to bring you to the video.

From Flix

Reading Revelations

There are only so many days that you have in this life. There are only so many chances you have to do what you really want to do. The clock is ticking constantly in our world, and quite often we choose to ignore it, putting things off until another day. Although I try not to reference it, there is the additional clock that early diagnosis of autism has put into our brain. Some research has indicated that treatment has the best results when provided before the age of 5. Tick tick tick tick. When asked his age I say 3 and a half. But in the back of my mind I see the days in the months; I know it is 16 and a half months until he is five. Tick tick tick.

This is the pressure of having a young child with autism. I have read various reports that indicate that children can make tremendous strides even after that age. In fact, I have read kids whose parents finally find an effective treatment when they are as old as 13, and they become able to read and write or even speak. An interesting story is that of Sue Rubin who was diagnosed at age 4 as severely autistic and retarded. She lived in her autism bubble for years. At age 13, she was introduced to Facilitated Communication where she went on to learn how to type, and graduated high school with honors. She is non-verbal and can function independently. I believe she is currently in college. I think FC has a limited audience in those who it can help, but it appears to have made a difference for her. As nice as these few stories are, it still hasn't assuaged the pressure; more research has indicated the younger the better.

Tick tick tick. So there is a pressure to get the most effective treatment possible for Zach prior to his turning 5. Is his school the best option for this? What is working? What isn't? Who can get the most out of Zach? Who isn't? My mother used to tell me that her grandmother used to say to her: "Little children, little problems; big children, big problems." I see how this makes sense with Sophia. As she gets older, her universe gets larger and brings with it the problems of the world. But Zach's issues are large - autism has thrust him into this larger universe usually left until adulthood - therapists, social workers, schools, doctors, lawyers, government, policies, laws. Blek.

I had the opportunity to hear the director from the Yale Child Study Center speak on education and children with ASD. It was a tremendous opportunity that I am completely grateful for. As someone pointed out, he was one of the first professionals she had ever heard, when speaking about kids on the spectrum, to refer to many of them as smart and very teachable. It was very motivational to say the least. I came out of the conference energized for sure. He indicated that out of a group of 8 children that he worked with several years ago, 5 went on to pass every one of their regents exams in high school! He mentioned that one girl was even in all-state chorus. But the thing I found most exciting was his emphasis that all the kids had autism "with a capital A" meaning not PDD-NOS, not Aspergers or High Functioning Autism. They were all classically autistic - previously referred to as Kanner's syndrome. The 5 hours flew by. As I looked around the room, I realized that out of the few parents there, I was likely the only one that was accompanied by their therapist. In fact, she was the only BCBA in the room. I realized I did have something to be grateful for right then and there.

But while this energized me to some degree, the pressure has actually mounted because of this. I have been neglecting some things about Zach's programs out of exhaustion and not wanting to be obtrusive or confrontational. I know I am no expert, but I can see some clear differences between what is recommended for kids like Zach and what he is receiving. It is up to me to see what I can rectify. This is going to be a lot of work.

Tick tick tick. Is this really how I want to spend my life? Ummm.... no. If I were to die tomorrow, would I be happy with what I was leaving. Ummm..... no.

I make sure to have moments to treasure. One of these is observing Sophia flourish. I watched Sophia get on the bus this morning as I do all mornings, and I felt joy in watching her independently walking to the bus, backpack on her back, smile on her face, ready to face whatever. And then my heart grew heavy. How can this instance bring me joy and sorrow at the same time? The juxtaposition of her brother. I so want Zachy to be able to do the same.

My little girl appears to be doing well. I met with her school psychologist, aware of my concerns, who said she has no indication that there are any problems with Sophia at school. I will be meeting with Sophia's teacher next week to discuss her future and what the expectations will be in first grade. But along with Sophia's development, I also am concerned with her happiness. That is one of the things I want in my life - to cherish my children, both of them. I made a point that Steve and I were there a few weeks ago at her school birthday party. (They were celebrating summer birthdays in June) and I signed up for a read to the class opportunity. I have not been in Sophia's class once all school year with the exception of these two events and one open house and one parent/teacher conference.

Can you believe I was actually suffering from stage fright? You should have seen me with piano recitals years ago! (I used to barf my brains out) And you wonder why I never continued on with that music major... Anyhow, I brought three of my favorite books for the class, "Diary of a Worm", "Skippyjon Jones" and "The Magic School Bus: Waterworks". As I read the first book - I felt like I was doing pretty good - they seem engaged and interested. The second book was a bit longer, but my mangled Spanish and Mexican accent kept them mostly engaged. The third book I was going to have to use another tactic - so I laid heavy on the eye contact. And something did catch my eye. Amidst the middle of this crowd of kindergarteners sat a little girl in a dress and... well... no underwear. It took everything I had not to react and to keep on reading. At least I know that I am not going to lose the mother of the year award this year to this mom; I have managed to get underwear on both kids prior to leaving the house so far all this year. I got in my car to leave, and I laughed so hard, like I hadn't in such a long time.

Glad I took the time to be with my daughter. The Divine even threw in a laugh for doing the right thing and taking the moment to appreciate my daughter.

Disconnects

Prior to realizing Zach's diagnosis, I felt that having children had made a huge impact on my life, much the same as many other mothers out there, I am sure. I was aware that having a child was going to change everything, and it has, but I wasn't sure how it would. While the change was sometimes construed as difficult, I was amazed at some of the positives. Being socially awkward, I realized that children are a great common denominator with other people. This allowed me to relate to people in a way I never felt I could before. In my career, and therefore many of my friendships, I was mostly surrounded by men and had learned to navigate the social uniqueness to them. I at some point preferred being around men (well geeky nerdy types at least) because it was the bulk of my exposure to others. When I first had Sophia, I mostly commiserated with mothers, and I felt as if I didn't know how to speak the language. I became impressed with my gender - because the birthing process and early days of infancy are excruciatingly demanding on a mom, yet we do it and encourage one another in the process. In the early days - there were playdates where I met great mothers and fathers that shared an interest in parenting and sometimes in the individual too. These relationships meant so much to me.

Then there was the connection with my mother-in-law. She was such a help when she was in town. Once strangers, then connected only be Steve, I was extremely grateful to have her by my side when I was trying to figure out some of this baby stuff. Where I have never had any major issues with my mother-in-law, I found that when I had children, and witnessed her love of them, our relationship deepened. She had joined "Team Sophie" and then "Team Zach". And when someone joins your kids team like that, your bond is strengthened.

My relationship with my mother was one of the more profound changes I went through. I love my Mom - she is a great gal, but sometimes felt like we were about as opposite as any two women could be. I felt she never truly understood me. When I had Sophia (and let's just say she wasn't the easiest baby in the world) I was so aware of all the my Mom had done for me, and all our differences seemed insignificant. All I could think of is my mother having gone through all she did for me. I would always be grateful for that.

The other day when talking to a friend with a child on the spectrum, this terrific mother mentioned that she had a conversation with her own mother, and that at some point, she realized her mother could never understand the nature of her problems of parenting her son. As she told me this, she began to tear, and I realized that all that connecting that having a child does, is seemingly undone by a disability. Indeed, I feel this way.

I had the recent opportunity to hear a professor speak on autism treatment. As part of his speech, he emphasized that autism is primarily a social disorder, and not a learning disorder. I realize now that my son's autism may be contagious - parents of kids with ASD likely have social disorders too, some of them prior to diagnosis, but others a consequence of it.

First off, my very poor relations to my family. This has been heartbreaking for me beyond explanation. I am not going to say it is their fault necessarily, it may be not. But it is strained, to say the least, and I have given up on reaching out to many of them and asking for help. I need all the energy I can muster for my kids right now so I cannot extend myself any further. I feel they don't get it and there is no amount of explaining that will ever get them there. I feel they could make a contribution to Zach's success if they could take the time to learn and spend some time with him. Apparently, they are unable to do this. They do have lives of their own after all. I always thought that if I really needed them, they would be there. Perhaps they don't realize our need. Perhaps, they think I am full of crap that autism is treatable, that Zach is teachable, that intervention makes a significant difference, that they could help intervene. I am obviously not a good salesman.

When this mother cried as she realized the disconnect from her mother, I realized that my relationship with my mother has changed. My mother is a proud woman, I was scolded throughout my lifetime for bad hair, makeup, and clothing. She was definitely one of those "what will the neighbors think" sort of people. When I chose engineering as a major, she scolded me; she had wanted me to be a lawyer. I never was quite sure if this was because she thought my abilities were better suited to law or if she just found it to be a more prestigious degree to have in my back pocket. Even upon getting my masters, first one in my family and 100% financed on my own, I never received kudos. I sometimes wonder if Zach and his behavior would not cut the mustard. While I don't feel my mother is embarrassed by Zachary, she tells her friends and people she comes into contact about him, and is always surprised how many other people are touched by a child on the spectrum. She has read a few of the books I passed to her on autism. She hugs him and smiles at him when she sees him. She comes around and visits him. She pays attention to the news reports on autism. I see her love him no differently than some of her uber-achieving grandchildren in medical school or on scholarship at a top notch university. I also think she would rather me just accept him as he is, and not be so impassioned in my attempts to get him to communicate better. A disappointment once again, the connection once so heightened, now diminished.

But, at first where I was angry with some of my family, I now know it appears to be the nature of the beast. There is a relatively new TV show on NBC called Parenthood. I have been able to watch episodes online at their website. I have made it a point to watch the show since one of the storylines is of a child newly dxed with Aspergers and the executive director and a writer for the show has a 13 year old with Aspergers. This show is not a feel good show for me, but has offered me a perspective. Two episodes in particular have made me feel like I am not just a raving loon, but a parent of an ASD child. One of the episodes, a cousin to the Aspergers child is thought to possibly be on the spectrum due to an obession that pops up. The mother of the ASD boy jumps into action, providing books and references to a doctor. At one point, this couple is almost excited that a sibling is going through the same thing. The sentiment is expressed that they didn't want to see another child with a disorder, but that they wanted someone else to connect with, to share and understand the journey, because you know what? You just cannot put it into words, you cannot explain it. Glimpses here and there are just that.

The other episode that offered me some thinking points involved the family trying to get all there other members involved in a awareness walk/fundraiser where they would compete as a team. The day of the race, only they end up showing up. Everyone is so involved in their own lives and their own issues, it just is too much for them. This reminded me of a few of the walks we have been to, where I watched some of the other families, who had created teams with matching t-shirts and all. It used to hurt, but now I just am glad to see people supporting others.

A line from this episode, uttered to a teenager with a broken heart, really struck a cord with me. I have edited to suit our situation:

"This is hard. You can't go through life allowing pain dictate how you behave. It's easy to sit here ... and wallow in your hurt feelings. It's hard to rise above it. This isn't about you... this isn't about [family member name], it's about _____" Blank filled in with Zach.

And there you have it. I try to show my support of my other family members and their own crisis and concerns. I am sure that they likely feel let down by me on some things too. But first and foremost, I worry about Zach and Sophia. Whatever's leftover, I divide up and give out. But right now, there isn't a lot left over.

And then there are those friends. People have quit coming around or calling. Some of it is natural life progression. Some of it is my incessant need to take any topic and find the degrees of separation between it and autism. I am so-o-o annoying. I sit there desiring so much for normalcy, or a mere glimpse of what life was like before autism entered the picture, and I somehow sit there rambling; always having to relay the latest research I read, the current state of legislature or insurance reform, the disappointments of the families I work with. It is a complete out of body experience; as I sit there watching myself ramble on, I yell at myself "No - don't go there. Ahhh geesh. Why'd you have to do that!" My brain is constantly processing our situation, the situation of other families on the spectrum, and all the knowledge I have taken in, and it sometimes seems to have to just come out of my mouth. It is no wonder that no one in the basic hemisphere wants wants anything to do with me right now.

Autism has helped make my social impairment worse with the the NTs (neurotypicals). Now those families in our boat with us? Sometimes I am treated like a rock star - they email me frequently, they want to talk to me, they ask me questions, I ramble on and on, and they seem to hang on my every word. The problem is, I can only seem to talk to them. I am traveling around this world in a bubble, the same bubble I am trying to break Zach out of.

I try not to isolate our family - we go to all the birthday parties, local events, local autism events. But I still feel isolated. But this isn't about me. It's about Sophia and Zach. So if it takes me being isolated to make sure my kids are not, that is the way it will be for now.

I am saddened by these disconnects we have faced. I wonder if there will be a time when I can reconnect with the world and those around us in a less profound way. As I told my sister that I wonder if the day will come where I don't have to chase kids around, changing diapers, making sure they don't get into trouble, she said with confidence, "Oh - it will come." I wondered if she said this with the ignorance of not thinking that we will never have that in our lives or if she really sees Zach progressing to that point. I didn't ask what she meant. I think I was afraid to know.

She called me later that day to say she saw a pilates class being offered close to my house. Would I be interested in going? I think of how I wish she could give Zach and hour of her time a week. But that's not being offered. I think of my stress level and how this may help. I take her up on the offer to check it out.

Memorial Day Memories are Made

When you live in a suburb of a small city in upstate New York, you anxiously await this time of the year. Some may refer to it as summer, but around here, we refer to it as festival season. There is Greek Fest, the Balloon Fest, the Polish Fest, the Middle Eastern Fest, A Taste of Syracuse, Jazz Fest, Oz-stravaganza (Oz Fest), Canal Days, Scottish Games, etc. all to be culminated by the end of the season New York State Fair that ends on Labor Day. Well actually, no. The fall has its own blend of events and festivals so I guess the State Fair isn't the end of it. But you get the idea. We basically live for the season we can actually exit our houses without having to take 15 minutes to dress in layers that make us appear like we live in the Antarctic. Since we don't have the plethora of art galleries, museums, restaurants, and clubs of most major cities, we commune at these various festivals. Did I happen mention Steve hates crowds? To the point of shutting down. He cannot even handle family events always - when we host, he will often take off at some point for a short walk, or recluse himself to the kitchen and clean up. People often take offense to him being like this, but I know now that it isn't anything personal, he is truly overwhelmed in these situations. The great philosopher, Sophia, once said: "It's important to love someone different than you." Well, I do.

Camillus is known for many things, like Camillus Cutlery (now defunct), one of the few Octagon houses remaining in New York, high school lacrosse and the marching band, and the existence of many people who still wear mullets and recount glory days of high school. OK. So we aren't the most of sophisticated of towns, but there is the one event of the year that seems to stand out around here, and it is Memorial Day. People take this seriously, decorating gravesides, cleaning up the yards , ensuring the America flag is flying over, and the Memorial Day events including a 5k race, a parade, a convocation.

I had noticed on one of my many trips to the library that they were setting up a carnival in the village as part of the festivities. I mentioned it to Steve, and asked him if we could take the kids. I had to ask him, mind you: 1) out of respect as a co-parent of our beautiful children, 2) knowing his sensory crowd issues and 3) because there aint no way I am going on any rides (especially that spin you around) unless you want to add another Festival to the list, namely Puke-a-Thon.

Well Steve lucked out because the crowds were at bay. First ride encountered: the Fun House. Calling this a ride is sort of a misnomer, of course. It does not spin or move or gyrate. I did not intend to have Zach go on this - because I did not feel it would be appealing to him. So off Sophia went, but then Zach gestured again and again that he wanted to go. OK. So, there was no one around, what the heck. He entered and proceeded, and then as he came upon the the first crook in the maze and looked confounded about the purpose of the ride, the crowds appeared. So we can't explain to him the expectations of this, we can not direct him what to do, and he lacks the imitation skills of other kids. Oh crap. What was I thinking? I see the look in Steve's eye, and he wants to know what I was thinking too. So now Steve and I are staring and sweating as we watch our 3.5 year old autistic son in a ride that's purpose is to confound and confuse and there are witnesses to the event. Worse parent award is coming my way. A little girl around 8 enters. Her parents note the looks on our faces (mine of confusion on how to handle this, Steve's of wanting to divorce me for my stupidity in letting his only son, with special needs to boot, enter the damned thing in the first place.) I decided that yelling directions and gesturing which way to go would be helpful despite the expert's opinions that he has no receptive language. Than I noticed him watch the little girl, whose parents told her to slow down and show Zach what to do (not realizing the experts have told me he doesn't have much in the way of imitation skills) and he did it. Between this little girl and her altruistic efforts, my gestures and overzealous verbal prompts, and the fact that the kid has some serious power going on between those two ears, he made it through, climbing ladders, twists and turns, and here and there slides. I was so proud that he did it - on his own. I was relieved that I didn't have to send his sister in to fetch him. Steve was relieved that he didn't have to go in and fetch him. And I was relieved that a marriage hurdle was cleared. He liked the fun house so much, he would end up going on it several times, having mastered what to do by the third time in.

He liked the other rides too, and figured out the process of what to do quickly. It starts off with Mommy and Daddy walking you up to an entrance, verifying height requirements by making you stand next to some stick, then handing the homeless looking man with no front teeth which is a convenient place to stick the Marlboro a few tickets and releasing you into said homeless looking man's custody where you climb aboard and are strapped in. You enjoy the ride and when it stops, this same man, cigarette fully employed, once again comes to you, and you let him release you from your captivity, and look to exit where parents are now standing with grateful smiles. Voila.




Mom and Dad got to run together, kids got to see the parade, rides, had the family over for picnic. OK - so Steve had to go into work on Memorial Day,other than that, it was a nice weekend that we were able to enjoy together. A special thanks to Babcia Morphet for all her help in going on rides that spin spin spin and make me nauseous.

Life is not a pie

here is this thing that happens when jump into the sea of autism: you find others alongside you, and you temporarily cling to them, as they are the only ones at the point in time that understand remotely what you are going through. They have children approximately the same age or with the same symptoms as your child. You ebb in and out of the waves as you first enter the water together. You share what you have figured out of the system that throws you in different directions - sort of like telling the others when hi and low tide times are. As time marches on, there is a pretty good chance that your paths diverge. Sometimes it is because you are doing different approaches, one might be doing ABA, the other Floortime, and yet another, just basic services. You may have chose different schools, no school and just letting kids be kids, or homeschooling. These different treatments generally don't divide us as much as a more obvious fact: some kids progress more than others. Some will tell you that they are progressing differently, which they are, but in terms of normalcy, and a possibility of arriving at it, there are those more obviously likely than others to achieve independently living.

I do not feel stabs in the heart when other children progress more/faster than Zach. But I will not lie, I used to. Now, I love seeing kids progress and love hearing those stories.

It's sort of like when I was single and my friends were getting married. Just because I wasn't married (and would not for some time, I was a ripe old maid still single at 30) didn't mean I didn't want to hang out with them anymore. They had managed a part of my dream I hadn't a little sooner, but that didn't stop me from dreaming of my prince charming and wishing them all the best. Those friends who had good marriages kept me in the game, they let me think that I could have my dream too. And I am 100% convinced that dreams are necessary; dreams are what make life bearable.

That didn't mean my heart didn't ache to find someone to share my life with, in fact, it did so much that I recall sitting in a friends car after choir practice one night, with the rain coming down, and asked her to pray with me. I asked her to help me ask God to either find someone or to take the longing in my heart away. It was within 6 months that I was to meet Steven. Supposedly, according to DH, he had said a very similar prayer at about the same time I did. I don't know if this is really true, or we was just trying to make me feel less corny.

Anyhow, I know that when I am with friends whose children are going gangbusters in the development department, neurotypical or not, there are these moments that I recoil into our little Morphet autism pit, a place where I try not to dwell for too long too often, but a break from pretending that Zach's autism is no big deal to me, that I am handling it like a champ, a place where I can feel sorry for myself and him and let the anger and sadness do its thing.

Recently, an old school chum contacted me through our reunion webpage. We befriended one another in facebook, and I, being the snoop I am, went through his profile to see all that he had become. He's a television producer now living the dream in L.A. Not what I thought he would be since he was very intent on music when I last saw him in like 7th grade and he was off to Interlochen. From what I can tell, he isn't married, but I am unsure of if he has children. I am sure my life is about the most unappealing thing he could ever think of - still in my hometown, stay at home mom, no plans for anything in the future other than keeping my head above water. I waded through his photos - news reporters, traveling and VIP rooms, and press badges... and something hit me. He had a group of his press badges in an album. As I perused them, I got a shock of feelings sent through me and it was not pleasant, at first I had no idea why. There was this one particular press badge that had handwriting on it- and when I saw it, I recognized it as his handwriting. Mind you, I haven't seen his handwriting in nearly 30 years! And then I recalled that in the 6th or 7th grade, I had a crush on him, most likely because he was the only kid taller than me in my class and he had an interest in music, and irresistible and hard to come by combination for my adolescent self. He wrote me a note that said he liked me only as a friend and then proceeded to ask my close friend Danielle out. Seeing his handwriting brought me right back to that time, that note, and the sensations of being rejected along with it. I was shocked at what a real and strong experience this was so many years after going through it. No - I am not feeling love lost here - but it was the first time I had ever been rejected, and I had totally forgotten about it until I saw this press badge. Repressed? I don't think so. Filled with other things, and some of them further and harder to handle rejections, absolutely.

Zach doesn't not have age appropriate verbal speech communication. He once had snippets of this - prior to his regression. He said "Please" and "thank you" unprompted spontaneously and appropriately, "oh no, what did you do?" At his 18 month screening, he even displayed some letter recognition, only to be taken away by the regression.

The other day, Steven brought home an iPad from his office. I, missing my days of playing with new stuff, delighted in it, and quickly went online looking for apps that I had read about. One app in particular that was published the 18th of May I grabbed first thing.

I sat with Zach and watched him delight in the new game, as he figured out how to push his finger around the screen, the big appeal of the iPad. A day later, he had mastered the movements of the iPad and he spelled a word on the screen as required for the game. When he got the answer right, and the game became animated to let him know he did it, for the first time that I can recall since before Zach's regression, he actually sought my eye contact out. He had this shocked and elated look on his face that was so evident that something was clicking in him. It was as if he was saying "Mom - I did this right? That's the purpose of letters right to make words? And words mean these objects, right? Mom - I get this, I remember how this works!" It reminded me so much of seeing my old school chum's press badge and the shock of recalling something from awhile back.

It took awhile for me to finish this post because into the Morphet pit I went with my bitterness as can be seen by the following paragraph.

But alas, the iPad will have to be returned, and at $600, we will not be able to buy one anytime soon. Therapy is running us around $1500 a month right now, and the diet, supplements, copays, uncovered medical expenses are tacking on non-negligible amounts too. Did I mention that Yale went up to $5500 for an evaluation? uugghh *sigh* I have heard that much of this should be on the shoulders of the school district or local government. Meanwhile, many of the things we request help for that others have had reimbursement for such as trampolines, swings, therapy are being rejected, too, and this one device that I can tell could be a huge help for him, will not even be considered. Meanwhile, how many civil servants are billing time to my son's case all while writing rejections to us rationalizing how they aren't going to provide him with services or whatever. Yes - that is a bitter taste is in my mouth, and it is likely time to recoil into that place when I just can't handle how stupid and unfair this stuff is. My son is being thrown under the bus once again.

Out of the pit I come...

I can see why jealousy or discomfort could be a problem between families with children on the spectrum. When little Joey gets something, and little Tommy doesn't, that's tough. When little Michael suddenly becomes verbal and little Andrew sits off in the corner stimming, that's tough. I am not mad at the other parents who get help, they deserve it as all those families with special needs should. I am not bitter as to why a child is speaking and Zach is not, they give me hope that Zach may one day do that, and that they will not be counted among those who will judge us when out in public and Zach does something strange. Life is not a pie with only so many slices to offer. The possibilities are always there and as endless as the starlit skies. Things may be unlikely, but so are nearly all innovations and big changes at one time. How many people would have believed cancers could be so treatable (as with my mother) or that we could check sports scores real time while camping in the woods or publish videos for all the world to see in a matter of 15 minutes of what felt like a miracle witnessed with their son.