Lately, I have found my pace of life to be a little too fast - and have been overwhelmed, and feeling run down. I didn't expect to see the finish line anytime soon, but it feels as though we are putting forth a good amount of effort lately, and achieving very little. After a bit of this, your motivation starts to wane, and everything becomes a struggle, even the simplest of actions feels exhausting.
So - yesterday - off to work I went with my terrific niece Melissa to watch the kids, and our therapist L. to do her job. Zach was screaming - I mean really screaming as I left. I had tears in my eyes because I just didn't know what was going to happen - was he going to throw up? Was he going to bite one of them? Would he bang his head? How much could these two young women handle?
While driving down 690, the dreaded cell phone rang. I saw it was from L. Uh oh. No way. How bad is this going to be? She gave me the scoop: Zach kept on raging for around 20 minutes, while L. tried to contain him. Zach's session was, to say the least, unsuccessful, however, he collapsed in her arms and fell asleep. She tried to wake him, but couldn't. He was so upset, that he was still 3-inhale gasping in his sleep. Oh gosh. Then L. offered to come back in the afternoon at 3 if that was OK with me. Wow - she was willing to do that? I mean I know she is getting paid and all - but this is far from any pleasant work experience. Uh OK.
How would he be with Melissa? So I went to work - and my thoughts were all about Zach. I was barely able to concentrate. How does Steve do it so well? He says he struggles too - but he is much better than I am. I am always in awe of him that way. The guy is damn smart and dedicated in all things that he does. I am so glad he is my husband, and more importantly, I am so glad he is the Dad to my kids.
Well, the phone rang again at 4:40. Oh no - it was L. again. Yikes. "Hello? What? He had a great session? He didn't cry when you came to the house? He cried when you went to leave? No way!" "What's that? No way -he said a new word!?! " L. was tickling Zach's feet and telling him she was tickling his toes, she did it over and over, and at one point he held up his foot and said "toes" .
Such a little gesture, but just what I needed to give me a little more energy to get other things done. I came home from work to find Sophie and Zach curled on Melissa's lap, which gave me this warm feeling that was close to actually getting cuddled to. I remember Melissa as a child, her smile, her goofiness, her sweetness. How she has grown - and how my son loves her. She probably has little understanding of what a big deal this is. He is a dash picky on who he accepts into his inner circle.
These two young woman and their love and resolve have proven to be a tremendous comfort to me and Steve. They will likely never understand what that means to the heart of a parent wanting someone to care for their children, especially when there are special needs involved. This gave me hope for their generation. This gave me hope for our life too.
Friday, February 6, 2009
Tuesday, February 3, 2009
Grumpy little boy, mean old men
So- Zach's fever broke over 2 days ago, and he has been extremely grumpy lately. Eye contact is greatly diminished once again, and he has muttered a few words, but no where near what he was up to this past November. Like I said before, this was one of my fears (that he would regress again that is) and the experts told me it was highly unlikely to happen again. I don't know what good it would be to call them and let them know what happened, but I may do just that, just in order to get it on his records.
Despite his grumpiness, he had an OK session with the therapist. I was shocked when I heard him go from screaming to an occasional giggle. L. said the session went OK, and that he engaged with her a bit.
I am wondering if there could be progression in one area (perhaps his motor development) that may end up causing the lack of language. I have noticed this sort of pattern in Sophie in her 4 years on Earth, that some things look like they are lagging for a bit, only to be regained after another area went through some new phase or growth. In fact, I can recall even a growth spurt could seem to put developmental issues into a plateau. But this is more than a plateau, he has actually stopped language again. I hope time will tell. I am still interested in looking into if there could be other allergies creating a problem for him.
As part of ABA therapy, you have to come up with incentives to motivate the kids to do their work. You start off with tangibles hopefully to lead into praise alone as the only incentive. I thought a first pass of incentives would include some food: (chocolate chips and pretzels), his Thomas the Train wooden train, bubbles, his shape sorter, holding him upside down, and of course tickles and hugs. I let L. know these. Hopefully in the next few weeks, will see what really delivers.
He is becoming more difficult now - which emphasizes the language deficit. I have a feeling his tantrums and crying episodes are largely linked to the fact that he observes more in the world, wants more of the world, yet hasn't figured out how to express it. My poor little guy. This really is wearing us down a bit. My sister-in-law had named the kids "Velcro and Elmer's" after wtinessing how "attached" they are to me. Zach literally wants me to hold him every waking second of the day. This is wearing thin- and makes it really difficult to get done even the most basic chores - it's like having a 30 pound newborn - and you can't use the Bjorn to keep your hands free! Needless to say, the house aint looking to pretty lately.
I knew as he became older that the situation in some ways would become more difficult. For the most part, Zach's autism is undetectable to the passer by - he is really cute. But his smile is not as frequent as he gets older, he has begun to scream and squelch along with tantruming, and he is always in my arms or pulling on me. It would become more and more noticeable I can see now, all because his frustration level is growing. My poor little guy!
Called and advocate yesterday in hopes of finding a way to get services for Zach and was pretty saddened by the outcome of the situation, which basically can be summed up as follows: "Yeah - that's too bad. That's the way it is. Once you are processed through the Central New York Disabilities Services Office, you can contact our agency to provide respite care." Not exactly the advocacy I was looking for. She herself was a parent of an autistic child who wanted ABA and drove to a nearby city to get it. I wonder if the system wore her down. I wonder if it will do the same to me.
With this in mind - I ask you to lend a hand in this advocacy thing - I will likely be distributing an email to this affect within the next few days - but will post about this now.
--------------------------------
From Autism Speaks: Although there has been no increase in the state supplement for 20 years, this year the New York Executive Budget is proposing to cut the state supplement to Social Security Insurance (SSI) payments for New Yorkers who are aged, blind or have a disability, such as autism. The proposed legislation would cut benefits by over 25% for individuals and couples living alone in the community and 45-70% for those living with other and are scheduled to occur in June 2009.
From Leanne: Did you know that most parents of autistic kids end up going down to one job in order to manage the care (and paperwork, research, phone calls, etc.) of their child? Do you know at this same time they end up paying out of pocket expenses for their child's care that usually ends up in the thousands? See the report finding here. Of course I know this - we already have spent over $5100 out of our pocket on Zach's care since November of last year, and we just began the private therapist that insurance will not cover, nor does it looke like we can get reimbursed for through our reimbursement account. I have taken a few leaves of absence, and am cutting my schedule that will result in a loss of pretax income of around $17,000 a year. I want to give everyone a look at the real numbers to get a feel for the financial stress this puts us under. And we are lucky, because we can still do these things.
What about those "working class" blue collar folks? It makes my blood boil to know that there are many kids not receiving the services they should be, and parents are forsaking their futures (I know of a few families who wiped out their retirement 401Ks) in an effort to get their kids the services they need. This is not about what is best for the child or what the parents want - this is about what the kids need in order to become self-sufficient adults at some point in their lives. I know the investment now saves the taxpayers a lot later on when we start talking about continuation of services, group homes, possible institutionalization that has been shown to be avoided when the necessary therapy interventions are put in place. People can be so shortsighted.
So - I ask each of you that reads this to contact your legislators and ask them to let them know you don't support this. I know we need to reduce spending, but lets get rid of pork-barrel superfluous type expenses - not for things that help those who need it the most! To look up your legislators go to: http://www.autismvotes.org/c.frKNI3PCImE/b.3932687/k.F652/Find_My_Legislators/siteapps/advocacy/search.aspx. I will likely create a form letter and distribute this by the end of this month for those who would like to help.
Despite his grumpiness, he had an OK session with the therapist. I was shocked when I heard him go from screaming to an occasional giggle. L. said the session went OK, and that he engaged with her a bit.
I am wondering if there could be progression in one area (perhaps his motor development) that may end up causing the lack of language. I have noticed this sort of pattern in Sophie in her 4 years on Earth, that some things look like they are lagging for a bit, only to be regained after another area went through some new phase or growth. In fact, I can recall even a growth spurt could seem to put developmental issues into a plateau. But this is more than a plateau, he has actually stopped language again. I hope time will tell. I am still interested in looking into if there could be other allergies creating a problem for him.
As part of ABA therapy, you have to come up with incentives to motivate the kids to do their work. You start off with tangibles hopefully to lead into praise alone as the only incentive. I thought a first pass of incentives would include some food: (chocolate chips and pretzels), his Thomas the Train wooden train, bubbles, his shape sorter, holding him upside down, and of course tickles and hugs. I let L. know these. Hopefully in the next few weeks, will see what really delivers.
He is becoming more difficult now - which emphasizes the language deficit. I have a feeling his tantrums and crying episodes are largely linked to the fact that he observes more in the world, wants more of the world, yet hasn't figured out how to express it. My poor little guy. This really is wearing us down a bit. My sister-in-law had named the kids "Velcro and Elmer's" after wtinessing how "attached" they are to me. Zach literally wants me to hold him every waking second of the day. This is wearing thin- and makes it really difficult to get done even the most basic chores - it's like having a 30 pound newborn - and you can't use the Bjorn to keep your hands free! Needless to say, the house aint looking to pretty lately.
I knew as he became older that the situation in some ways would become more difficult. For the most part, Zach's autism is undetectable to the passer by - he is really cute. But his smile is not as frequent as he gets older, he has begun to scream and squelch along with tantruming, and he is always in my arms or pulling on me. It would become more and more noticeable I can see now, all because his frustration level is growing. My poor little guy!
Called and advocate yesterday in hopes of finding a way to get services for Zach and was pretty saddened by the outcome of the situation, which basically can be summed up as follows: "Yeah - that's too bad. That's the way it is. Once you are processed through the Central New York Disabilities Services Office, you can contact our agency to provide respite care." Not exactly the advocacy I was looking for. She herself was a parent of an autistic child who wanted ABA and drove to a nearby city to get it. I wonder if the system wore her down. I wonder if it will do the same to me.
With this in mind - I ask you to lend a hand in this advocacy thing - I will likely be distributing an email to this affect within the next few days - but will post about this now.
--------------------------------
From Autism Speaks: Although there has been no increase in the state supplement for 20 years, this year the New York Executive Budget is proposing to cut the state supplement to Social Security Insurance (SSI) payments for New Yorkers who are aged, blind or have a disability, such as autism. The proposed legislation would cut benefits by over 25% for individuals and couples living alone in the community and 45-70% for those living with other and are scheduled to occur in June 2009.
From Leanne: Did you know that most parents of autistic kids end up going down to one job in order to manage the care (and paperwork, research, phone calls, etc.) of their child? Do you know at this same time they end up paying out of pocket expenses for their child's care that usually ends up in the thousands? See the report finding here. Of course I know this - we already have spent over $5100 out of our pocket on Zach's care since November of last year, and we just began the private therapist that insurance will not cover, nor does it looke like we can get reimbursed for through our reimbursement account. I have taken a few leaves of absence, and am cutting my schedule that will result in a loss of pretax income of around $17,000 a year. I want to give everyone a look at the real numbers to get a feel for the financial stress this puts us under. And we are lucky, because we can still do these things.
What about those "working class" blue collar folks? It makes my blood boil to know that there are many kids not receiving the services they should be, and parents are forsaking their futures (I know of a few families who wiped out their retirement 401Ks) in an effort to get their kids the services they need. This is not about what is best for the child or what the parents want - this is about what the kids need in order to become self-sufficient adults at some point in their lives. I know the investment now saves the taxpayers a lot later on when we start talking about continuation of services, group homes, possible institutionalization that has been shown to be avoided when the necessary therapy interventions are put in place. People can be so shortsighted.
So - I ask each of you that reads this to contact your legislators and ask them to let them know you don't support this. I know we need to reduce spending, but lets get rid of pork-barrel superfluous type expenses - not for things that help those who need it the most! To look up your legislators go to: http://www.autismvotes.org/c.frKNI3PCImE/b.3932687/k.F652/Find_My_Legislators/siteapps/advocacy/search.aspx. I will likely create a form letter and distribute this by the end of this month for those who would like to help.
Monday, February 2, 2009
Need to release.... and a big thank you
So it's 3:00 am and I cannot sleep. I am really frustrated with some people in my life, and very hurt. Whereas some people have been nothing short of terrific in offering help or checking in with us on how things are going, there are some who have done nothing, people we really counted on.
I remember reading of my friend M's trials and tribulations of people who did and did not offer her support as she discovered her son's autism. I remember feeling bad about how some of her friends and family seemed to offer her no support whatsoever. Now, I was not necessarily the best friend to her in the world, but I tried to stay in touch and let her know I was listening, if nothing else. As I knew little about autism at the time, I tried to read up on it to understand. Indeed, this little research that I did may be just why I was able to do such an early dx on Zach. Funny, how these things work out, eh?
I can recall M. explaining that so many of her friends turned out to be fair weather ones, and that family members were in disbelief of what she was going through. I remember feeling that that would never happen to me. hmmmph.
To those of you reading this blog - I can assure you that you are likely not the people who I am saddened by. I think the people that I am talking about haven't even taken the time to log on to the blog and check it out, they are too caught up in their "busy" lives. I used to think I was busy, too, before all this. Afterall, I had a career, two young children, some extracurricular activities, a house, a running hobby, and a widowed mother keeping me on my toes. Ha ha - I didn't have a clue.
Steve and I don't have full cable TV. We don't watch it - not that we don't want to. We haven't seen an adult (no I don't mean porno - just nothing of the Disney/Barney/Care Bear variety) movie in God knows how long. I have not run in over 5 months - and I used to 4 times a week. The last book I read was about integrative medicine approaches of autism. (and the one before that was about autism in some sort of variety or another, and the one before that was about something to do with autism, and you get my drift.) There are no self indulgences right now, with the the exception of a chocolate bar I bought at Aldis.
I remember going out to dinner, the symphony, a play, running a race, skiing, taking the dog for a walk through the neighborhood. I really do miss those things. But I believe that one day we will be able to enjoy those things again. Right now I need to do what I need to do: research, phone calls, letters, read books, talk to therapists, hound the county about services, make homemade waffles that are GFCF, look into supplements, join some parent groups, attend conferences and lectures, not get fired from my job, love my husband and kids, and pray.
Yesterday, Zach's fever broke, and we decided that it would nice to go out on a 40 degree day and play in the snow. The kids loved it. Sophie and Steve made a really lame snowman - but had fun doing so. Zach had a hard time walking through the deep snow (didn't we all!) but loved sticking his mittened hand in and then sticking a glob of snow in his mouth. (No yellow snow I assure you.) It felt so good to get outside. I realized the mood when we returned back in the house was much more jovial - even Zach seemed to get some relief out of getting some fresh air. Cabin fever is such a problem in CNY. By the way - we are up to 140" of snow for the year.
If you made it this far, thanks for reading my gripe session. I may just have to write certain people off in my life right now - I cannot afford to be hurt by their careless inaction, indeed, there is much too much to do right now with the little energy I have. But so many of you have been great, and have energized me through simple well wishes and checking in. I thank you!
Now, I haven't talked to my friend M. in awhile- there is something I have to do today, I think I will give her a call and ask her how things are going. Oh - I better wait until at least 9 am. :)
I remember reading of my friend M's trials and tribulations of people who did and did not offer her support as she discovered her son's autism. I remember feeling bad about how some of her friends and family seemed to offer her no support whatsoever. Now, I was not necessarily the best friend to her in the world, but I tried to stay in touch and let her know I was listening, if nothing else. As I knew little about autism at the time, I tried to read up on it to understand. Indeed, this little research that I did may be just why I was able to do such an early dx on Zach. Funny, how these things work out, eh?
I can recall M. explaining that so many of her friends turned out to be fair weather ones, and that family members were in disbelief of what she was going through. I remember feeling that that would never happen to me. hmmmph.
To those of you reading this blog - I can assure you that you are likely not the people who I am saddened by. I think the people that I am talking about haven't even taken the time to log on to the blog and check it out, they are too caught up in their "busy" lives. I used to think I was busy, too, before all this. Afterall, I had a career, two young children, some extracurricular activities, a house, a running hobby, and a widowed mother keeping me on my toes. Ha ha - I didn't have a clue.
Steve and I don't have full cable TV. We don't watch it - not that we don't want to. We haven't seen an adult (no I don't mean porno - just nothing of the Disney/Barney/Care Bear variety) movie in God knows how long. I have not run in over 5 months - and I used to 4 times a week. The last book I read was about integrative medicine approaches of autism. (and the one before that was about autism in some sort of variety or another, and the one before that was about something to do with autism, and you get my drift.) There are no self indulgences right now, with the the exception of a chocolate bar I bought at Aldis.
I remember going out to dinner, the symphony, a play, running a race, skiing, taking the dog for a walk through the neighborhood. I really do miss those things. But I believe that one day we will be able to enjoy those things again. Right now I need to do what I need to do: research, phone calls, letters, read books, talk to therapists, hound the county about services, make homemade waffles that are GFCF, look into supplements, join some parent groups, attend conferences and lectures, not get fired from my job, love my husband and kids, and pray.
Yesterday, Zach's fever broke, and we decided that it would nice to go out on a 40 degree day and play in the snow. The kids loved it. Sophie and Steve made a really lame snowman - but had fun doing so. Zach had a hard time walking through the deep snow (didn't we all!) but loved sticking his mittened hand in and then sticking a glob of snow in his mouth. (No yellow snow I assure you.) It felt so good to get outside. I realized the mood when we returned back in the house was much more jovial - even Zach seemed to get some relief out of getting some fresh air. Cabin fever is such a problem in CNY. By the way - we are up to 140" of snow for the year.
If you made it this far, thanks for reading my gripe session. I may just have to write certain people off in my life right now - I cannot afford to be hurt by their careless inaction, indeed, there is much too much to do right now with the little energy I have. But so many of you have been great, and have energized me through simple well wishes and checking in. I thank you!
Now, I haven't talked to my friend M. in awhile- there is something I have to do today, I think I will give her a call and ask her how things are going. Oh - I better wait until at least 9 am. :)
Saturday, January 31, 2009
Bottlehead - I am such a bad mommy
So, cranky tired sick kids are no fun no matter who you are. As we frantically searched for Zach's bottle, Sophie whined to the point that I thought my ears were going to fall off my head. And then it appeared. And Sophie whined some more - and rather than save her from her distress, I did what any reasonable unloving mother would do - I grabbed my camera and took pictures. Zach's bottle attached itself to Sophie's hair. Babcia Morphet and I laughed. I mean really laughed. Poor Sophie. I think we are setting her up for a life in politics, just like the Clintons did to Chelsea.
Anyhow - good news - Zach said a few words - he said "moo", "baa", and pretended to snore. We are so excited that he said these few words again - we haven't heard them in quite awhile. HURRAY ZACH! Go Z Go!
Anyhow - good news - Zach said a few words - he said "moo", "baa", and pretended to snore. We are so excited that he said these few words again - we haven't heard them in quite awhile. HURRAY ZACH! Go Z Go!
Volcanoes and Stones
So Zach is still running a fever - got up to 103.6 this afternoon. I hate seeing him like this, his already
quiet self near catatonic with fever. No words for too long now. I keep on thinking that they (the Yale psychologist and the local developmental pediatrician) said this would only happen once.But we still have to have some fun around here. The other day - prior to fevers et al, we made a volcano out of playdoh and did the ol' baking soda/vinegar lava trick. So this is not something that is in the books about appropriate play for kids on the spectrum, especially at a young age - but he loved it nonetheless. It was fun to watch him giggle everytime Sophia put the vinegar in the pink tower of playdoh in anticipation of the bubbles that would soon overflow.
I keep on thinking back to the GFCF diet and how Zach used to have volcanic erruptions himself, and how the doctor told me this was normal. Everyone who witnessed it knew it was pretty excessive even friends with kids who had reflux issues. And I was just reminded a few weeks ago of how frustrating this was - how at a cousin's wedding in the fog of embarrassment of Zach yacking right next to the bride and groom's table - as the bride and groom came running to see if they could help I muttered something like: "Just walk away, you don't want to see this." Not exactly nice of me to say to the bride on her most special day and I don't even recall doing it. I felt terrible that I could have been so rude. But after several months of watching this happen, it had me on such an edge, I am not surprised I was either.
So within a week the GFCF diet worked. He quit puking, gained eye contact, became more verbal, engaged with everyone much more. So why the regression? His diet hasn't changed. I am reading a bit about allergies/food sensitivites and would like to have him tested. From what I read, sometimes stronger sensitivities initially mask lesser ones which end up worsening after you pull the more offending foods. I called a doctor I had heard about on Thursday who would do the testing we needed, but unfortunately, she closed her practice on December 31st. Ohhh no.
Yesterday, a few friends called to check in and see if we could get together. God Bless them! These simple gestures help me to really pull out of the low points. I also realize that God intervenes using things like this. A friend invited us to a gym and movie night)Sophie's old favorite "Finding Nemo" at My Gym - the kids gym and activity place. Sophie had school cancelled on Wednesday and Friday (snow day an teacher's conference) and was really itching to get out of the house. We decided we would make plans to go and that would be some great one-on-one time for us.
Sophie had a blast! And I saw a few mothers I haven't seen in awhile. One in particular, got to talking with me. She began discussing her son's skin condition and how it cleared up once they took certain foods out of his diet. I asked her how she knew what the culprit was - and she said she had him tested. I went on to tell her that we had Zach on the GFCF diet. She looked right at me and asked if he as autistic - and I told her yes. Wow - she was pretty astute. She then gave me the name of the doctor she went to and told me she knew he treated other children on the spectrum. She even had his card with her - and I looked at the address - it's 1 mile down the road from our house!
For those of you who don't believe in a supreme being like I do - I know you are thinking this is all coincidence. I am a pretty logical, analytical being, and tend to feel that way about things too. But I can tell you, that in my heart, this serendipity does not feel like mere coincidence, but another stone we are supposed to step on in our path to wherever we are supposed to be going. It may not unlock the mystery, but I am supposed to investigate it anyway, and I will. No stone will go unturned.
Friday, January 30, 2009
Another letter
So, we are still without the necessary services from the county and Zach is running a fever of 103.5 degrees. To those with children, we all know that having a sick child is no fun, a high fever even worse. Add in the complexity of a special needs child who is non-verbal and doesn't understand language - -and all I can say is another layer of heartache. I cannot tell him that he is sick and that it will pass. I cannot tell him that he needs to drink to stay hydrated. I cannot tell him that he should not fight the medicine we are trying to give him and puke it up all over the place, or else out come the suppositories that are only in acetaminophen and don't last nearly as long as ibuprofen. But probably worst of all, he can't tell me if/where it hurts. With this in mind, I have decided that every time Zach gets sick, he will immediately go to the doctor in case of something more serious. There goes some serious amount of time and copays, my friends.
So off Steve took Zach to the dr's so that I could go to work and hammer out a new schedule and deal with several meetings. While at the dr's office with Steve - he yacked all over. Steve was going to ask Dr. N about getting Zach tested for Lyme disease, but amongst the chaos, did not manage to sneak it in. So, we decided, since we think the front office at the pedi's is sometimes hard to navigate, we would send a fax with our request and medical reasoning with attention to Dr. N. Let's see what kind of response we get - Steve is sending it from work as I write this.
In the meantime, I ran into an old neighbor who as part of pleasant coversation, asked about the kids. So I told her. People likely don't want to hear the truth, but I have decided to tell them anyway. Some people probably think I am nuts, but once in awhile I find it worthwhile. And that was the case yesterday. As I explained to her our lack of services (to which she chimed in she was not a fan of Facilitated Communications) I recalled she used to be a school teacher, and furthermore, a school administrator. She was so patient as I told our story, and then she gave me a peice of advice - contact the state department of education and let them know. I realized she was used to dealing with school age or preschool kids, and this would make sense for that. But Zach was only two - and this isn't in the school district's jurisdiction yet. But, nonetheless, her point was a good one; someone at the state level was overseeing this, and they should be notified of our situation - so I skipped my 15 minute lunch yesterday and rattled of the following letter to the New York State Department of Health Early Intervention Program email listed on their website. Make no mistake about this folks, even though I blog, I do no consider myself a good writer - I know I am likely very deficient in grammar and whatnot - afterall, us engineers have never been known for our writing skills. However, all you English teacher types out there - feel free to give me some pointers, as I haved a feeling I will be writing a bunch of these letters in the near future.
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Availability of ABA services in Onondaga County
Our child was diagnosed with an ASD at the end of November while in Early Intervention services. As part of his evaluation a report was drafted which included the diagnosis and recommendations for ABA type services.
After notifying our Service Coordinator of the diagnosis and providing copies of his evaluation report, we requested ABA-type services. We are being told by our Service Coordinator and the Onondaga County Early Intervention Program Coordinator that these services are not available in our area under the Early Intervention program. They have stated that there are professionals in the area who do ABA type therapy, and he will be eligible for those services when he can be admitted into a preschool program this September. (9 months away)
Frankly, we are extremely surprised by this since both the "Clinical Practice Guideline Report of the Guideline Recommendations Autism / Pervasive Developmental Disorders Assessment and Intervention for Young Children (Age 0-3 Years)" sponsored by the New York State Department of Health Early Intervention Program and the "Autistic Spectrum Disorders Children Under Age 5 Onondaga County Resource Guide for Families and Professionals" both specify that:
"Behavioral and educational interventions are currently the predominant approach for treating children and adults with autism."
and
"It is recommended that principles of applied behavior analysis (ABA) and behavior intervention strategies be included as important elements in any intervention program for young children with autism."
More than two months have now passed since my son's diagnosis. Furthermore, it should be noted that he started in the Early Intervention Program in July of 2008, and has shown no progress using DIR/Floortime approaches from his SLP and only recently began OT services - a total of 2 hours of services compared to the 20 hour minimum recommended in the "Clinical Practice Guideline". We are told by the professionals that time is of the essence in getting our son the services he needs (as prescribed by two doctors) - that we need immediate and intense intervention, yet feel an unreasonable amount of time has passed for not getting these services.
This is a very difficult time for any parent, and is exacerbated by feeling that we cannot give him what he needs. If you feel you could be of any assistance to us or to Onondaga County in helping us get the necessary services for our son, we would appreciate any help you could offer.
Sincerely,
Dr. and Mrs. Steven Morphet
So off Steve took Zach to the dr's so that I could go to work and hammer out a new schedule and deal with several meetings. While at the dr's office with Steve - he yacked all over. Steve was going to ask Dr. N about getting Zach tested for Lyme disease, but amongst the chaos, did not manage to sneak it in. So, we decided, since we think the front office at the pedi's is sometimes hard to navigate, we would send a fax with our request and medical reasoning with attention to Dr. N. Let's see what kind of response we get - Steve is sending it from work as I write this.
In the meantime, I ran into an old neighbor who as part of pleasant coversation, asked about the kids. So I told her. People likely don't want to hear the truth, but I have decided to tell them anyway. Some people probably think I am nuts, but once in awhile I find it worthwhile. And that was the case yesterday. As I explained to her our lack of services (to which she chimed in she was not a fan of Facilitated Communications) I recalled she used to be a school teacher, and furthermore, a school administrator. She was so patient as I told our story, and then she gave me a peice of advice - contact the state department of education and let them know. I realized she was used to dealing with school age or preschool kids, and this would make sense for that. But Zach was only two - and this isn't in the school district's jurisdiction yet. But, nonetheless, her point was a good one; someone at the state level was overseeing this, and they should be notified of our situation - so I skipped my 15 minute lunch yesterday and rattled of the following letter to the New York State Department of Health Early Intervention Program email listed on their website. Make no mistake about this folks, even though I blog, I do no consider myself a good writer - I know I am likely very deficient in grammar and whatnot - afterall, us engineers have never been known for our writing skills. However, all you English teacher types out there - feel free to give me some pointers, as I haved a feeling I will be writing a bunch of these letters in the near future.
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Availability of ABA services in Onondaga County
Our child was diagnosed with an ASD at the end of November while in Early Intervention services. As part of his evaluation a report was drafted which included the diagnosis and recommendations for ABA type services.
After notifying our Service Coordinator of the diagnosis and providing copies of his evaluation report, we requested ABA-type services. We are being told by our Service Coordinator and the Onondaga County Early Intervention Program Coordinator that these services are not available in our area under the Early Intervention program. They have stated that there are professionals in the area who do ABA type therapy, and he will be eligible for those services when he can be admitted into a preschool program this September. (9 months away)
Frankly, we are extremely surprised by this since both the "Clinical Practice Guideline Report of the Guideline Recommendations Autism / Pervasive Developmental Disorders Assessment and Intervention for Young Children (Age 0-3 Years)" sponsored by the New York State Department of Health Early Intervention Program and the "Autistic Spectrum Disorders Children Under Age 5 Onondaga County Resource Guide for Families and Professionals" both specify that:
"Behavioral and educational interventions are currently the predominant approach for treating children and adults with autism."
and
"It is recommended that principles of applied behavior analysis (ABA) and behavior intervention strategies be included as important elements in any intervention program for young children with autism."
More than two months have now passed since my son's diagnosis. Furthermore, it should be noted that he started in the Early Intervention Program in July of 2008, and has shown no progress using DIR/Floortime approaches from his SLP and only recently began OT services - a total of 2 hours of services compared to the 20 hour minimum recommended in the "Clinical Practice Guideline". We are told by the professionals that time is of the essence in getting our son the services he needs (as prescribed by two doctors) - that we need immediate and intense intervention, yet feel an unreasonable amount of time has passed for not getting these services.
This is a very difficult time for any parent, and is exacerbated by feeling that we cannot give him what he needs. If you feel you could be of any assistance to us or to Onondaga County in helping us get the necessary services for our son, we would appreciate any help you could offer.
Sincerely,
Dr. and Mrs. Steven Morphet
Tuesday, January 27, 2009
Is your product GFCF? WHOA!
My question:
To Whom it Concerns:
I have a child with food intolerances and would like to know if your product Westsoy Rice Milke Plain, is casein and gluten free.
Sincerely,
Leanne Morphet
----------- THE RESPONSE ---------------------------------------------------------------
Dear Ms. Morphet,
Thank you for taking the time to contact us regarding our Westsoy Product. We apologize for the delay in our reply and appreciate your patience. We strive to maintain the highest quality products and we appreciate your patronage.
We consider gluten to be in the following, barley, bulgur, couscous, durum, graham flour, kamut, malt , rye, semolina, spelt, triticale and any other types of wheat. We do not consider any oat products to be gluten free due to the fact that studies are needed to determine the long- term safety of oat consumption. The issue of cross contamination with oat and wheat remains a concern in North America.
We do not have lists of products that are specifically considered to be gluten free. Reading the label is the best way to check for the presence of ingredients which contain gluten. If gluten is an ingredient it is listed separately and not under "natural flavors" or "spices". Consumer health and safety is our number one concern, and we do not want to provide information which may not be accurate in the future.
The Hain Celestial Group's labeling declares major allergens (peanuts, soybeans, milk, eggs, fish, crustaceans, tree nuts, and wheat) and we follow the U.S. FDA's regulations. In addition, our labeling always declares gluten containing ingredients. We recognize the serious nature of the allergen issue and we strive to minimize risk.
Both major and minor ingredients of all products, as well as all processing procedures and equipment, are closely scrutinized and all potential allergen issues as determined by the Hain Celestial Group are declared on our labeling.
We assure you that strict manufacturing processes and procedures are in place and that all of our manufacturing facilities follow rigid allergen control programs that include staff training, segregation of allergen ingredients, production scheduling, and thorough cleaning and sanitation.
Thank you for your continued support. If we can be of further assistance, please feel free to contact us at 1-800-434-4246, Monday through Friday from 7AM - 5PM Mountain Time.
Sincerely,
George
Consumer Relations Representative
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I have a hard enough time reading all the chem/bio/genetic/neurological research I have been doing lately. Couldn't they just have said yes or no?
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