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.
Saturday, June 12, 2010
Friday, June 4, 2010
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.
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.
Tuesday, June 1, 2010
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.
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.
Saturday, May 15, 2010
For real?
I have been looking at posted positions at various companies in the area. I have also been looking online for career advice and stumbled upon an article discussing inappropriate interview questions.
First came this quote:
In other words - pretend you are a rug and lie. OK you mothers out there who feel that children don't impact your careers - who are you, what are you children like and what do you do for a living? I am not criticizing working moms - no way! I just think that people want us to say that raising kids is no sweat, and that is false. The only way this could possibly be true is with a lot of support, and that means a lot of money. So perhaps for those with a lot of money and support, this is true. Funny. I just don't seem to meet many of these women. And I am undoubtedly not one of these women.
I did not lose my job because of my children. I lost my job because of my priorities. Once again, I am concerned that when (notice I didn't say if because I am feeling hopeful) my kids read this blog one day, I never want my kids to feel bad that my career went down the toilet because of them. It went down because of me! I am now convinced that I was the world's lousiest engineer. OK - not the lousiest, but let's just say my heart was never in it the way it should have been. I know I never felt inspired like I should have been, although I am coming to realize this might have been the industries I worked in more than the job category. In my children, I find great inspiration. I am using every bit of education that I worked on, every work experience to deal with this crazy situation we are facing. I would almost say that I love my "new job", with the exception that I hate that Zach has some of the issues he has. But my heart is in it, 100%. It's hard, the pay stinks and I want to quit on some days, but I never will.
I have some concerns about Zach's progress. I worry that preschool is not an appropriate place for him - he seems to lack so many of the prerequisite social skills that are needed to really get anything out of it. Sometimes I feel that he is in daycare, not a school setting. The therapists that work there are top notch. I am concerned that he doesn't get the one on one and intensity that will make a difference. I am not sure if he is getting what he needs.
I hate looking at my failures. And the fact that I left his last CPSE meeting in status quo makes me angry with myself. I suck at confrontation. I suck at thinking on my feet. And those skills are the most important during those meetings. uugghhh
Zach loves going on the swings. After the last 2 years, feeling that we might have made a foolish investment in the playset we bought, I can now say it is a joy to watch him run to it every break he gets. This good weather we have been having is helping to make more opportunities for him to get out there. He loves the sand box. He likes the slip-n-slide. He picks up sticks, he plays with dirt, he gets in my garden.
Zach's language skills are still lagging very far behind. I am realizing that his receptive language (what he understands) is much better than his expressive. It's easy for a novice like myself to misunderstand that these two are separate, and should be evaluated separately. I have been trying to work on goals with him, and without the credentials or experience of an SLP or special education teacher, with the only tools that I have: my educated and trainable brain, my interest in technology, my engineering troubleshooting skills, and most importantly my never ending love which inspires me to stay the course.
I am happy to announce that Zach's alphabet knowledge is right on. I witnessed a game tell him to pick the letter that made the "teh" sound and watched him search the letters of the alphabet until he found the 'T'. He managed to do this for several letters. As we sat on the orthopedist office, he pointed to the Waiting Room D sign and said "D". While in school playing at the magnetic letters center, he grabbed a letter showed the aid at the center and said "C" proudly. He recognizes capital letters, he recognizes lower case letters. He can say the phonetic pronunciation of a letter when prompted with a: "the [name of letter] says" _____. I know this may seem out of order in that if he doesn't even understand what a word is, why do I have him learning letters? I saw a sparkle in his eye when he learned his letters. When he spelled out a word on his one game the other day - he looked at me like "Holy sh*t - this means something doesn't it? " When he spelled out some words on his one game - he stimmed like crazy. Normally, stimming would be something we try to avoid - but I know that when Zach feels pleasure/happiness/excitement this is what happens. How many kids would feel this way about letter recognition and letter usage if they didn't know it meant something?
We are working on some stuff with him. I am very excited. He is such a joy to me, even though he is such a mystery too. When I saw him seeking my eye contact out when he spelled this word on his new game, I felt a pleasure like I haven't in such a long time. It's not a wish, it's not hope, it's not the possibility. This is real.
First came this quote:
"New college grads don't realize they [potential employers] are not allowed to ask anything about your health. Even if you walk in limping or on crutches," says Fisher. That extends into alcoholism as well. "You could walk into an interview drunk, talk about how you're always drunk, and legally they cannot use that information against you."That's it all you new grads - go out there and tip a few before your next interview. Then this next quote nearly made wet myself:
Fisher points out that if you get asked about kids -- and if you do, indeed, have children -- be sure to mention that parenthood has not interfered with your career.
In other words - pretend you are a rug and lie. OK you mothers out there who feel that children don't impact your careers - who are you, what are you children like and what do you do for a living? I am not criticizing working moms - no way! I just think that people want us to say that raising kids is no sweat, and that is false. The only way this could possibly be true is with a lot of support, and that means a lot of money. So perhaps for those with a lot of money and support, this is true. Funny. I just don't seem to meet many of these women. And I am undoubtedly not one of these women.
I did not lose my job because of my children. I lost my job because of my priorities. Once again, I am concerned that when (notice I didn't say if because I am feeling hopeful) my kids read this blog one day, I never want my kids to feel bad that my career went down the toilet because of them. It went down because of me! I am now convinced that I was the world's lousiest engineer. OK - not the lousiest, but let's just say my heart was never in it the way it should have been. I know I never felt inspired like I should have been, although I am coming to realize this might have been the industries I worked in more than the job category. In my children, I find great inspiration. I am using every bit of education that I worked on, every work experience to deal with this crazy situation we are facing. I would almost say that I love my "new job", with the exception that I hate that Zach has some of the issues he has. But my heart is in it, 100%. It's hard, the pay stinks and I want to quit on some days, but I never will.
I have some concerns about Zach's progress. I worry that preschool is not an appropriate place for him - he seems to lack so many of the prerequisite social skills that are needed to really get anything out of it. Sometimes I feel that he is in daycare, not a school setting. The therapists that work there are top notch. I am concerned that he doesn't get the one on one and intensity that will make a difference. I am not sure if he is getting what he needs.
I hate looking at my failures. And the fact that I left his last CPSE meeting in status quo makes me angry with myself. I suck at confrontation. I suck at thinking on my feet. And those skills are the most important during those meetings. uugghhh
Zach loves going on the swings. After the last 2 years, feeling that we might have made a foolish investment in the playset we bought, I can now say it is a joy to watch him run to it every break he gets. This good weather we have been having is helping to make more opportunities for him to get out there. He loves the sand box. He likes the slip-n-slide. He picks up sticks, he plays with dirt, he gets in my garden.
Zach's language skills are still lagging very far behind. I am realizing that his receptive language (what he understands) is much better than his expressive. It's easy for a novice like myself to misunderstand that these two are separate, and should be evaluated separately. I have been trying to work on goals with him, and without the credentials or experience of an SLP or special education teacher, with the only tools that I have: my educated and trainable brain, my interest in technology, my engineering troubleshooting skills, and most importantly my never ending love which inspires me to stay the course.
I am happy to announce that Zach's alphabet knowledge is right on. I witnessed a game tell him to pick the letter that made the "teh" sound and watched him search the letters of the alphabet until he found the 'T'. He managed to do this for several letters. As we sat on the orthopedist office, he pointed to the Waiting Room D sign and said "D". While in school playing at the magnetic letters center, he grabbed a letter showed the aid at the center and said "C" proudly. He recognizes capital letters, he recognizes lower case letters. He can say the phonetic pronunciation of a letter when prompted with a: "the [name of letter] says" _____. I know this may seem out of order in that if he doesn't even understand what a word is, why do I have him learning letters? I saw a sparkle in his eye when he learned his letters. When he spelled out a word on his one game the other day - he looked at me like "Holy sh*t - this means something doesn't it? " When he spelled out some words on his one game - he stimmed like crazy. Normally, stimming would be something we try to avoid - but I know that when Zach feels pleasure/happiness/excitement this is what happens. How many kids would feel this way about letter recognition and letter usage if they didn't know it meant something?
We are working on some stuff with him. I am very excited. He is such a joy to me, even though he is such a mystery too. When I saw him seeking my eye contact out when he spelled this word on his new game, I felt a pleasure like I haven't in such a long time. It's not a wish, it's not hope, it's not the possibility. This is real.
Thursday, May 13, 2010
Angels in various forms
In a book I recently reviewed about faith and specials needs, I was pleasantly surprised to read about a Muslim who helped the author and her family. I believe I commented about this in the previous post when I reviewed the book. While I am a Christian, and this story is told from the perspective of a Christian, I was happy to see that the book tells of an angel sent to the family in Muslim form. We too have had such a Muslim presence in our lives.
A family who knew little of our situation made a lovely gesture to us by spending time with Sophia. I often worry that I am not always able to attend to Sophia as I wish due to the constant doctor and therapy appointments, and that she is lacking the attention she deserves. I had always assumed that it would be my family who would come to her rescue, but things just don't always work out the way you expect them to. This family recognized that I was busy, with what? They didn't know at first.
They have a daughter in Sophia's class. They get Sophia off the bus for me, feed her, and keep her occupied. This one day every couple of weeks offering has meant the world to me. At first I was nervous, they did not know me, they did not understand what we were going through. I picked up Sophia after an initial playdate and felt the need to explain why I appeared to be always on the go and was unable to reciprocate. The mother insisted there was no need for explanation, she could see I needed help, and she was glad for a friend for her own daughter. What a lesson I learned that day.
I told her of Zach's diagnosis anyway. Then this gracious lady told me that her husband was a neurologist and to use him as a resource if I wished. When I think about this family, I often think of the lack of judgment we faced: they never asked what was going on, they just offered to help. They are a perfect mix of compassion and humility.
Now this woman was not perfect, she actually made comments to me that "he looked fine" and that he was like a cousin's son who was just a late bloomer. I knew she didn't intend any ill will when she made these comments. I let them pass.
One day, when I went to pick up Sophia after Zach's therapy, she invited us in. There sat her husband. She made me a plate of lovely Egyptian food, and her husband and I, sat eating our meal, discussing Zach and autism. Meanwhile she attended to Zach in the adjacent room, listening to our conversation.
His specialty is stroke care, so he could not offer specific medical opinions, but he gave us an opinion on sticking with it and keeping Zach engaged. He had a fellowship in Pittsburgh, where they have a terrific children's hospital and was able to see a little bit about autism care. One other interesting note he offered me was that the neurologist we went to see, prestigious as her credentials and background is, was not a pediatric neurologist. This certainly made me view her advice and opinions differently. (It also irked me that my pediatrician sent us to someone who did not specialize in pediatrics, lets alone autism.) Two things stand out from our visits to her: 1) her comment that Zach's brainwaves (as recorded in his two EEGs) were "mature", that of a child 2 or 3 years older, and that is indicative of a high IQ. 2) The other comment, was not to pursue any intense intervention with him, that he was likely a weird little math genius. I noticed that none of this made it's way into the official report. I often think about recording my visits to the various doctors we see - just to capture things I think no one would believe when I write them.
A few weeks later, this mother approached me after swim lessons, and once again offered to take Sophia, and added that she would take Zach too, so that I could have some time to myself. She went on to say that she knew she didn't understand all that we were going through, but to count on her if we needed her.
Our experience has taught me so much. Unfortunately, some of it, a self awareness that I was not the most understanding person myself. I am shameful of my past pretense of compassion and sympathy.
This woman also taught me much about myself and who I would like to be. Much like me, she is an educated SAHM (stay at home Mom) . This woman has no complaints about her nomadic lifestyle (just part of being a doctor's wife she says) and lack of career, nor of the type of work she does (cooking, cleaning, tending to children). Sometimes this SAHM thing does erode a little bit of my sense of self - so much of my identity was weighted upon my career. I have this idea of the person I want to be; I value being useful, respected, and appreciated very much. My career provided me with value for these things. I will not be given paychecks or awards for my work. When I am asked, as I frequently am, what I do for a living, I will say SAHM, and see that the doctors and other professionals do not take me as seriously as when I was a career gal with a masters degree. I am not sure if I will ever even get that appreciation since I am really working for myself, and have to learn to appreciate myself! I can still pursue my values, and now with a sense of humility, since not many people aspire to be in my shoes.
Zach's diagnosis has come with a plethora of life experiences for us that go beyond the autism itself. I am fascinated by the variations of people; that my expectations of people have been both unmet, leaving me disappointed and hurt, and surpassed, where I am amazed at the generosity and thoughtfulness of strangers.
This family has meant a lot to me, and unfortunately given me sad news that they will be moving soon, the doctor is pursuing his next fellowship, likely in South Carolina. But I am grateful for their presence, albeit short, in our lives.
A family who knew little of our situation made a lovely gesture to us by spending time with Sophia. I often worry that I am not always able to attend to Sophia as I wish due to the constant doctor and therapy appointments, and that she is lacking the attention she deserves. I had always assumed that it would be my family who would come to her rescue, but things just don't always work out the way you expect them to. This family recognized that I was busy, with what? They didn't know at first.
They have a daughter in Sophia's class. They get Sophia off the bus for me, feed her, and keep her occupied. This one day every couple of weeks offering has meant the world to me. At first I was nervous, they did not know me, they did not understand what we were going through. I picked up Sophia after an initial playdate and felt the need to explain why I appeared to be always on the go and was unable to reciprocate. The mother insisted there was no need for explanation, she could see I needed help, and she was glad for a friend for her own daughter. What a lesson I learned that day.
I told her of Zach's diagnosis anyway. Then this gracious lady told me that her husband was a neurologist and to use him as a resource if I wished. When I think about this family, I often think of the lack of judgment we faced: they never asked what was going on, they just offered to help. They are a perfect mix of compassion and humility.
Now this woman was not perfect, she actually made comments to me that "he looked fine" and that he was like a cousin's son who was just a late bloomer. I knew she didn't intend any ill will when she made these comments. I let them pass.
One day, when I went to pick up Sophia after Zach's therapy, she invited us in. There sat her husband. She made me a plate of lovely Egyptian food, and her husband and I, sat eating our meal, discussing Zach and autism. Meanwhile she attended to Zach in the adjacent room, listening to our conversation.
His specialty is stroke care, so he could not offer specific medical opinions, but he gave us an opinion on sticking with it and keeping Zach engaged. He had a fellowship in Pittsburgh, where they have a terrific children's hospital and was able to see a little bit about autism care. One other interesting note he offered me was that the neurologist we went to see, prestigious as her credentials and background is, was not a pediatric neurologist. This certainly made me view her advice and opinions differently. (It also irked me that my pediatrician sent us to someone who did not specialize in pediatrics, lets alone autism.) Two things stand out from our visits to her: 1) her comment that Zach's brainwaves (as recorded in his two EEGs) were "mature", that of a child 2 or 3 years older, and that is indicative of a high IQ. 2) The other comment, was not to pursue any intense intervention with him, that he was likely a weird little math genius. I noticed that none of this made it's way into the official report. I often think about recording my visits to the various doctors we see - just to capture things I think no one would believe when I write them.
A few weeks later, this mother approached me after swim lessons, and once again offered to take Sophia, and added that she would take Zach too, so that I could have some time to myself. She went on to say that she knew she didn't understand all that we were going through, but to count on her if we needed her.
Our experience has taught me so much. Unfortunately, some of it, a self awareness that I was not the most understanding person myself. I am shameful of my past pretense of compassion and sympathy.
This woman also taught me much about myself and who I would like to be. Much like me, she is an educated SAHM (stay at home Mom) . This woman has no complaints about her nomadic lifestyle (just part of being a doctor's wife she says) and lack of career, nor of the type of work she does (cooking, cleaning, tending to children). Sometimes this SAHM thing does erode a little bit of my sense of self - so much of my identity was weighted upon my career. I have this idea of the person I want to be; I value being useful, respected, and appreciated very much. My career provided me with value for these things. I will not be given paychecks or awards for my work. When I am asked, as I frequently am, what I do for a living, I will say SAHM, and see that the doctors and other professionals do not take me as seriously as when I was a career gal with a masters degree. I am not sure if I will ever even get that appreciation since I am really working for myself, and have to learn to appreciate myself! I can still pursue my values, and now with a sense of humility, since not many people aspire to be in my shoes.
Zach's diagnosis has come with a plethora of life experiences for us that go beyond the autism itself. I am fascinated by the variations of people; that my expectations of people have been both unmet, leaving me disappointed and hurt, and surpassed, where I am amazed at the generosity and thoughtfulness of strangers.
This family has meant a lot to me, and unfortunately given me sad news that they will be moving soon, the doctor is pursuing his next fellowship, likely in South Carolina. But I am grateful for their presence, albeit short, in our lives.
Monday, May 10, 2010
What is that boy up to?
Changes. One thing you can count on in life, right? Change. The other thing to expect in life? The unexpected.
Zach is definitely been going through something, although I'll be darned into thinking I can describe it with any clarity. I try to think of him clinically - how many words is he able to say? how often are they spontaneous? any inappropriate behaviors? does he respond to requests? does he imitate behavior? does he initiate social contact? does he have repetitive motor movements? does he perseverate on a single word or activity? what are his motor skills like? how has his eye contact been? These things all whirl around me head at any given moment.
I feel that we are still under a great deal of stress, but, like many things that require more efforts, we are getting used to the level of difficulty.
Zach's speech has become more clear. He has uttered some new words and some (perhaps even most) of it can be credited to the tubes in his ears. What words you ask? Well "booger" and "bacon". I can assure you that we have not officially worked on those in any therapeutic setting.
He is also trying real hard to sing "Twinkle Twinkle Little Star". I love that he will be playing by himself and sing this to himself. Very sweet.
Zach is loving the warmer weather. LOL Yes, I have to laugh at this, since it is May 9 (Mother's Day 2010) and it snowed for over 5 hours here in Syracuse today. (Once again, my procrastination has paid off, and my tomatoes have been spared as they sit in my garage unplanted.) He really loves his playset, climbing the rockwall, sliding down the slide, and swinging, and swinging, and swinging.
Sophia does not like to swing. Never has. I remember getting a baby swing as a shower gift, and after going through year 1 of Sophia's life, thinking that swings were a total waste of $$$. Then along came Monsieur Zachary, and it's worth became a lot more valuable. Zach has taken to the swing very well, and holds on independently like a trooper (has since he was quite young). I am having a helluva time trying to show him how to pump, so for now, I just push him. I actually will grab the swing while he is up, and make him say "push" for me to give him an extra push and let him continue on. As for mechanical mobile devices, there is interest but either not an understanding of action/reaction or really bad motor planning issues. He refuses to pedal or steer his tricycle at home, although reports from school indicate he has done it, to some extent there. *sigh* As for the scooter which I know he was interested in after watching the neighbors daughter do it, it makes me laugh every time I see him get on it. I bought him a scooter with a wider base (thinking it would be easier to stabilize and balance on.) Zach will stand on it with both feet holding the handles appearing to wait for it to move on it's own, as if it were a Segway.
He is interested in balls, but has not a clue what sports are, nor can he really play a game of catch. He loves water, and I am unable to bring him to Sophia's swimming lessons, since he wines and tantrum to jump in the pool the whole time we are there. I need to get him lessons or therapy or something! Of course, I cringe at thinking about trying to get ear plugs into those little ears without a fight.
He is eating well, as usual, broccoli, carrots, corn, peas, strawberries, raspberries, melon, cucumbers, apples, bananas, chicken nuggets, turkey, beef and chicken hot dogs (organic, no nitrite/nitrate varieties) , bacon, pan fried ham, rice, mashed potatoes and french fries, gluten free pastas (I really like the quinoa), coconut/almond/rice milk. We make homemade breads and baked goods for him (to die for chocolate chip peanut butter cookies and very yummy waffles/pancakes) and he eats a host of gluten free casein free snacks such as pretzels, potato chips, fruit snacks, Tings, faux graham crackers, crackers. I think that reducing the amount of grains/carbs he is getting really helps to create a healthier diet for him - he is so much more interested in fruits and veggies than so many other kids, and especially his sister Sophia. He eats a variety, but we have noticed that he is still set in his ways - only eating the store bought GFCF chicken nuggets, and not my homemade for instance. He won't eat my meatballs (Sophia gives them a thumbs up.) Steve and I are short order cooks around here.
We are still not even close to the potty training. It exhausts me to just think about it. He attempts other self care activities, including brushing his teeth and flossing, taking his socks off and attempting to put them on, unzippering and zippering various items of clothing, but he has a way to go in terms of dressing himself. I am always amazed during evaluations of what they consider to be normal for dressing - Sophia still cannot do buttons or snaps!
Zach is doing well with letter recognition and the associated phonetics. How he is managing to learn letter recognition prior to him knowing how to speak fluently just makes me shake my head. I know this gestalt thing is likely the culprit, but it still messes with my mind to see him accomplish some things that he does in the order he does. It's a great reminder for me to never give up on him when it appears he doesn't get it.
Socially, he still prefers adults to other children, with the exception of small groups of NT boys around Sophia's age. I only wish we had more access to boys for him to hang with. Most of the typical kids in Zach's classroom are girls. He seems to really like to watch them engaged in sports. I still find it funny that it is apparent every once in awhile, for his preference to males over females. I suppose if I had all these daunting chicks hovering over me all the time, I would need a little testosterone presence in my life too.
I would never had guessed that a kid on the spectrum could smile as much as Zach does, nor to show so much affection to his mother. I have to tell you that I feel he loves me and is happy as much as I do Sophia - actually, I might even know it more for him! Sophia has become rigid and occasionally mean to me. Almost like a young teenager. She tells me what to do, rather than ask, and fights me on just about every request I make of her. I have had it out with her a few times the last month. I also know that she is currently really stressed out.
Sophia has begun to bite her finger nails. Might not sound like too big of a deal. But it gets worse. She is chewing on everything, like a teething toddler. Mind you, she is losing teeth and getting adult teeth (she has lost 3, and 2 adult teeth have come in). I am wondering if this is creating a lot of sensory issues for her. I have given her chewy tubes, no interest, and chewing gum, she swallowed it. I have found a cool whip container chewed on, a cup, a few boxes we had, towels around the house, and of course those nails. When I ask her if she is OK - she says yes. I question her specifically, and nothing stands out, with the exception of a falling out with her previously known best friend. Heather has begun to make remarks to Sophia like "purple is boring", trite to you and me, but basically denigrating my daughter's 5 year old identity. SOphia loves purple and to a 5 year old girl, such a thing as a color preference is such a huge part of their world. Heather also makes fun of Sophia's other choices and wants to dominate their playtime together. Sophia is often left in a ball of tears. I originally thought to let them work it out between the two of them, I am sure Sophia is no angel, and likely contributing to their discord too. She needs to learn social skills. But this chewing thing, and the stress the family is under has me rethinking that tune. I know a little bit about what Sophia is like - I see a bit of myself in her, for better or worse. I know that she is a pretty sensitive kid who lacks social understanding. That was (is?) me. It breaks my heart to think that she will likely have her heart broken a few times, long before any boy comes around. I would become very attached to friends, but was not good at keeping them around. My interests were rigid and narrow, my academic interests were a turn off. And my ability to relate, understand what was being said to me, especially in social circumstances, lacks such depth. Furthermore, I have a hard time acknowledging a person's thoughts and feelings without getting totally wrapped up in my own emotions which is a huge turn off to people. I hope she can find her way better than I did.
For now, there is ballet, swimming, soccer starts next week, the occasional play date, the never ending birthday parties ( I am convinced that September/October is peak mating season in Camillus) and all the day to day things like homework, learning site words, riding our bike around the block, reading books, etc.
I was glad to hear at the Mother's Day family round table today that a sibling of mine attended some sort of autism awareness training at her place of employment. She recalled learning that many children on the spectrum do not have mental retardation and some other facts. She said a few times to me "It was like you said", which left me wondering "Did you think I was making this stuff up?" LOL Of course, I am grateful that she is trying. My other sibling passed along a local family life publication from this month in which the whole edition was concentrated on special needs. She also passed a telephone number for a nurse at the hospital where she works who has an 8 year old with autism and was a parent advocate at one time. I appreciate the efforts of both of my siblings to try and understand what we are going through. I didn't receive any tangible gifts for mother's day, but these were more significant to me anyhow.
The house is a mess, two of my tomato plants are dead (damn snow), tomorrow we are off to Rochester to get Zach evaluated, again, and life just keeps on moving forward. Oh yeah - in other big news, received a phone call a few weeks ago from my dear MIL (mother-in-law) and she sold her house (finally) in NC. She is moving up here in a few weeks! That's sure to change the dynamics around here. Here's hoping!
Our current motto: Expect change, expect taxes, and expect the unexpected.
Zach is definitely been going through something, although I'll be darned into thinking I can describe it with any clarity. I try to think of him clinically - how many words is he able to say? how often are they spontaneous? any inappropriate behaviors? does he respond to requests? does he imitate behavior? does he initiate social contact? does he have repetitive motor movements? does he perseverate on a single word or activity? what are his motor skills like? how has his eye contact been? These things all whirl around me head at any given moment.
I feel that we are still under a great deal of stress, but, like many things that require more efforts, we are getting used to the level of difficulty.
Zach's speech has become more clear. He has uttered some new words and some (perhaps even most) of it can be credited to the tubes in his ears. What words you ask? Well "booger" and "bacon". I can assure you that we have not officially worked on those in any therapeutic setting.
He is also trying real hard to sing "Twinkle Twinkle Little Star". I love that he will be playing by himself and sing this to himself. Very sweet.
Zach is loving the warmer weather. LOL Yes, I have to laugh at this, since it is May 9 (Mother's Day 2010) and it snowed for over 5 hours here in Syracuse today. (Once again, my procrastination has paid off, and my tomatoes have been spared as they sit in my garage unplanted.) He really loves his playset, climbing the rockwall, sliding down the slide, and swinging, and swinging, and swinging.
Sophia does not like to swing. Never has. I remember getting a baby swing as a shower gift, and after going through year 1 of Sophia's life, thinking that swings were a total waste of $$$. Then along came Monsieur Zachary, and it's worth became a lot more valuable. Zach has taken to the swing very well, and holds on independently like a trooper (has since he was quite young). I am having a helluva time trying to show him how to pump, so for now, I just push him. I actually will grab the swing while he is up, and make him say "push" for me to give him an extra push and let him continue on. As for mechanical mobile devices, there is interest but either not an understanding of action/reaction or really bad motor planning issues. He refuses to pedal or steer his tricycle at home, although reports from school indicate he has done it, to some extent there. *sigh* As for the scooter which I know he was interested in after watching the neighbors daughter do it, it makes me laugh every time I see him get on it. I bought him a scooter with a wider base (thinking it would be easier to stabilize and balance on.) Zach will stand on it with both feet holding the handles appearing to wait for it to move on it's own, as if it were a Segway.
He is interested in balls, but has not a clue what sports are, nor can he really play a game of catch. He loves water, and I am unable to bring him to Sophia's swimming lessons, since he wines and tantrum to jump in the pool the whole time we are there. I need to get him lessons or therapy or something! Of course, I cringe at thinking about trying to get ear plugs into those little ears without a fight.
He is eating well, as usual, broccoli, carrots, corn, peas, strawberries, raspberries, melon, cucumbers, apples, bananas, chicken nuggets, turkey, beef and chicken hot dogs (organic, no nitrite/nitrate varieties) , bacon, pan fried ham, rice, mashed potatoes and french fries, gluten free pastas (I really like the quinoa), coconut/almond/rice milk. We make homemade breads and baked goods for him (to die for chocolate chip peanut butter cookies and very yummy waffles/pancakes) and he eats a host of gluten free casein free snacks such as pretzels, potato chips, fruit snacks, Tings, faux graham crackers, crackers. I think that reducing the amount of grains/carbs he is getting really helps to create a healthier diet for him - he is so much more interested in fruits and veggies than so many other kids, and especially his sister Sophia. He eats a variety, but we have noticed that he is still set in his ways - only eating the store bought GFCF chicken nuggets, and not my homemade for instance. He won't eat my meatballs (Sophia gives them a thumbs up.) Steve and I are short order cooks around here.
We are still not even close to the potty training. It exhausts me to just think about it. He attempts other self care activities, including brushing his teeth and flossing, taking his socks off and attempting to put them on, unzippering and zippering various items of clothing, but he has a way to go in terms of dressing himself. I am always amazed during evaluations of what they consider to be normal for dressing - Sophia still cannot do buttons or snaps!
Zach is doing well with letter recognition and the associated phonetics. How he is managing to learn letter recognition prior to him knowing how to speak fluently just makes me shake my head. I know this gestalt thing is likely the culprit, but it still messes with my mind to see him accomplish some things that he does in the order he does. It's a great reminder for me to never give up on him when it appears he doesn't get it.
Socially, he still prefers adults to other children, with the exception of small groups of NT boys around Sophia's age. I only wish we had more access to boys for him to hang with. Most of the typical kids in Zach's classroom are girls. He seems to really like to watch them engaged in sports. I still find it funny that it is apparent every once in awhile, for his preference to males over females. I suppose if I had all these daunting chicks hovering over me all the time, I would need a little testosterone presence in my life too.
I would never had guessed that a kid on the spectrum could smile as much as Zach does, nor to show so much affection to his mother. I have to tell you that I feel he loves me and is happy as much as I do Sophia - actually, I might even know it more for him! Sophia has become rigid and occasionally mean to me. Almost like a young teenager. She tells me what to do, rather than ask, and fights me on just about every request I make of her. I have had it out with her a few times the last month. I also know that she is currently really stressed out.
Sophia has begun to bite her finger nails. Might not sound like too big of a deal. But it gets worse. She is chewing on everything, like a teething toddler. Mind you, she is losing teeth and getting adult teeth (she has lost 3, and 2 adult teeth have come in). I am wondering if this is creating a lot of sensory issues for her. I have given her chewy tubes, no interest, and chewing gum, she swallowed it. I have found a cool whip container chewed on, a cup, a few boxes we had, towels around the house, and of course those nails. When I ask her if she is OK - she says yes. I question her specifically, and nothing stands out, with the exception of a falling out with her previously known best friend. Heather has begun to make remarks to Sophia like "purple is boring", trite to you and me, but basically denigrating my daughter's 5 year old identity. SOphia loves purple and to a 5 year old girl, such a thing as a color preference is such a huge part of their world. Heather also makes fun of Sophia's other choices and wants to dominate their playtime together. Sophia is often left in a ball of tears. I originally thought to let them work it out between the two of them, I am sure Sophia is no angel, and likely contributing to their discord too. She needs to learn social skills. But this chewing thing, and the stress the family is under has me rethinking that tune. I know a little bit about what Sophia is like - I see a bit of myself in her, for better or worse. I know that she is a pretty sensitive kid who lacks social understanding. That was (is?) me. It breaks my heart to think that she will likely have her heart broken a few times, long before any boy comes around. I would become very attached to friends, but was not good at keeping them around. My interests were rigid and narrow, my academic interests were a turn off. And my ability to relate, understand what was being said to me, especially in social circumstances, lacks such depth. Furthermore, I have a hard time acknowledging a person's thoughts and feelings without getting totally wrapped up in my own emotions which is a huge turn off to people. I hope she can find her way better than I did.
For now, there is ballet, swimming, soccer starts next week, the occasional play date, the never ending birthday parties ( I am convinced that September/October is peak mating season in Camillus) and all the day to day things like homework, learning site words, riding our bike around the block, reading books, etc.
I was glad to hear at the Mother's Day family round table today that a sibling of mine attended some sort of autism awareness training at her place of employment. She recalled learning that many children on the spectrum do not have mental retardation and some other facts. She said a few times to me "It was like you said", which left me wondering "Did you think I was making this stuff up?" LOL Of course, I am grateful that she is trying. My other sibling passed along a local family life publication from this month in which the whole edition was concentrated on special needs. She also passed a telephone number for a nurse at the hospital where she works who has an 8 year old with autism and was a parent advocate at one time. I appreciate the efforts of both of my siblings to try and understand what we are going through. I didn't receive any tangible gifts for mother's day, but these were more significant to me anyhow.
The house is a mess, two of my tomato plants are dead (damn snow), tomorrow we are off to Rochester to get Zach evaluated, again, and life just keeps on moving forward. Oh yeah - in other big news, received a phone call a few weeks ago from my dear MIL (mother-in-law) and she sold her house (finally) in NC. She is moving up here in a few weeks! That's sure to change the dynamics around here. Here's hoping!
Our current motto: Expect change, expect taxes, and expect the unexpected.
Wednesday, May 5, 2010
It's just not me
I walked a mile with Pleasure,Throughout April, I periodically posted on Facebook, facts regarding autism for Autism Awareness Month. Last week was the end of April. And I was foolish. I decided to try and really catch people's attention and be a little provocative and wrote something "catchy". My previous posts had included the definition of autism, prevalence rates, treatment efficacy. I was going to write something about increasing autism diagnosis rates. But I scratched that. (*Idiot*, said to myself.)
She chattered all the way;
But left me none the wiser,
For all she had to say.
I walked a mile with Sorrow
And ne'er a word said she;
But, oh, the things I learned from her
When Sorrow walked with me!
Robert Browning Hamilton
I have recently decided that as strong as I appear to some, I am incredibly wimpy, and have been struggling how to deal with my deficiencies, in particular, in dealing with the school district regarding Zach's services. I feel very alone in this fight, and when I was pushed, I fell down. And I am still struggling to get up.
I am so impressed with some of the other mother's I read about and witness. They probably take for granted their strength. I do not. There was a post that someone put on facebook quoting something about standing up for what you believe in, and that a person with only friends and no enemies has never stood up for what they believe in. I cannot even remember the quote, which makes this story all the more pathetic.
Anyhow, in wishing to be someone that I am not, I posted a provocative post as my last installment for Autism Awareness 2010:
Ever see that Mom with that kid tantruming in the grocery store and you think: "Why can't she control that brat?" Fluorescent lights, loud sounds, strange smells; a child on the spectrum? Quit staring. Better yet, go ask that Mom if she could use a hand. Your choice, but stop being ignorant about autism.
Well, a small firestorm ensued. People were upset, including me. And I lit the match. I was not happy with the way I felt about this. I realized that this just is not my style. I was not happy with the results. It is not who I am. Wimp.
In the end, I guess I am not the in your face sort of person that others are. I was happy that some mothers spoke up and stated that in their pre-autism and pre-parenting days they too were judgmental. Indeed I was too! I am very lucky to have had a friend going through much of this before we did, and I read with open eyes her experiences in her own blog. I scanned much of it, not understanding the technical stuff, only to reread much of it in with a closer eye when we began our own journey.
Our journey is still our journey. Just as each child on the spectrum is an individual with their own symptoms, our family is unique too, like any other family.
My heart still aches for our situation. I wonder if I am still in grief. I wish I was more surefooted about what we are doing. I wish I didn't feel like the system has taken advantage of us in our grief and our own ignorance on how things work.
At so many steps in our journey, I have had various professionals tell me how smart I am. Why do they tell me this? Because I have read a few books, read a few articles on the Internet, and talked to some others who have been through this before me? I feel patronized. I don't want to feel good about myself, I want to feel that the right decisions are being made for Zach and that he is getting what he needs.
We are going to Strong Hospital in Rochester to have Zach evaluated. I prefer to go out of the area for these evaluations. I have serious concerns that intentionally or not, local professionals have concerns more than my son when they give recommendations. First off, they may limit their recommendations to the local resources that are available to the child. And then there is the matter of their reputation: if they give recommendations for needing lots of resources, school districts and local government agencies are likely to squawk at using them. I just feel that going out of the area is more of an independent evaluation of what is needed.
Mother's Day is coming around the bend. No one could love Zach or Sophia more than I do, and I do try to take care of them best I know how. For this, I hope I can be deemed a good mother. I am still working on the advocacy part.
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