So it's five days before Christmas, and I have noticed that Buddy has been sleeping more than usual these past few weeks. Well, then this last week I noticed his breathing has been quite rapid. We were supposed to bring him to the vet yesterday, but alas, the winter storm kept us from doing much of anything.
Today, while I took Zach to his class, Steve took Buddy to the vet. Buddy has the tumor the size of a grapefruit on his spleen. They are not sure if it is cancer or a large blood mass. But either way, he will not survive. They didn't give us a prognosis - but made mention that depending on what he has (the cancer or the blood mass) he likely has weeks to months.
Despite this, he was acting pretty normal. Until this evening. He insisted on going with us to Church (no we left him in the car...) and all seemed OK. Then we arrived home and he refused to eat his dinner. After we ate ours, I took him into the family room to cuddle. After 20 minutes, he got up off the couch and jumped to the floor. He walked around a bit and then he collapsed. We were able to get him up to the mud room where he is now. He won't take the pain pills that the vet gave to us.
So now Steve and I are standing watch over him. He has been a terrific family member and I don't want to see him suffer. I let him know that it's OK and that he can leave me now, that he doesn't have to take care of me anymore. Steve will take care of us now and keep us safe. I love Buddy very much; more like a child than a pet. He has seen me through some really tough times, and taught me not to be selfish. He has done his job.
I ask that God take him in as painless way as possible.
What an absolute tough Christmas this is turning out to be.
We have a lovely home, two great jobs, food on the table - so many things to be grateful for. But when the people (and pets) you love are in distress, none of that other seems to matter. I would gladly live in a shack with the basic necessities if I could have those I love not have to go through all this.
Saturday, December 20, 2008
Thursday, December 18, 2008
Still waiting
So Babcia (Grandma) M. is back in town and staying with us for the holidays. It is very likely we will once again hold her hostage and help us through the next month or so as we traverse the path of getting the services Zach requires with his new diagnosis.
And that brings us to the report. It should arrive either today or tomorrow. I am dreading reading it, yet am in great anticipation of receiving it. The report contains the findings from Zach's evaluation at Yale. It should be an approximate 30 page report that includes details of his evaluation, their findings, and their recommendations for treatments.
Some of these items we already have begun to work on, as we were briefed while still in Connecticut. One thing we have taken initiative on is getting Zach into a pediatric neurologist to check out his arm tensing (most likely a self stimulatory behavior that many autistic kids have also referred to as a "stim") to determine if this is seizure activity. A study that I read recently has indicated that when there is regression in normal development, as was the case with Zach, their is a higher risk for epilepsy.
Another area we have scheduled Zach for is an ABR or auditory brainstem response hearing test. Since they were not able to 100% confirm that Zach had no hearing loss back in July using the normal sound booth testing, the folks at Yale recommended this. This ABR test, however, requires sedation, and has me feeling uneasy.
Recent research has shown that children with autism spectrum disorder process sounds slightly slower than other children, which may be linked to listening and language issues of children with an ASD. I don't believe that we will be able to get that detailed information from this particular test. But this is interesting, nonetheless. I would love to know why he does not respond to his name - something that can be so very frustrating to me. Will I ever know?
When is that report going to get here!
And that brings us to the report. It should arrive either today or tomorrow. I am dreading reading it, yet am in great anticipation of receiving it. The report contains the findings from Zach's evaluation at Yale. It should be an approximate 30 page report that includes details of his evaluation, their findings, and their recommendations for treatments.
Some of these items we already have begun to work on, as we were briefed while still in Connecticut. One thing we have taken initiative on is getting Zach into a pediatric neurologist to check out his arm tensing (most likely a self stimulatory behavior that many autistic kids have also referred to as a "stim") to determine if this is seizure activity. A study that I read recently has indicated that when there is regression in normal development, as was the case with Zach, their is a higher risk for epilepsy.
Another area we have scheduled Zach for is an ABR or auditory brainstem response hearing test. Since they were not able to 100% confirm that Zach had no hearing loss back in July using the normal sound booth testing, the folks at Yale recommended this. This ABR test, however, requires sedation, and has me feeling uneasy.
Recent research has shown that children with autism spectrum disorder process sounds slightly slower than other children, which may be linked to listening and language issues of children with an ASD. I don't believe that we will be able to get that detailed information from this particular test. But this is interesting, nonetheless. I would love to know why he does not respond to his name - something that can be so very frustrating to me. Will I ever know?
When is that report going to get here!
Wednesday, December 17, 2008
Rumsfeld
So, many people have tried to show their support of us and we appreciate it greatly. More often than not, people have done what we asked from them, and not dropped us out of their normal world as the people with "all the problems" and "the weird kids".
Sometimes people try and be too understanding. They try and show that they understand what we are going through even though we know darn well that they haven't a clue. For those with children, have you ever had a person who doesn't have children explain to you how to handle your children? People without children make the best parents.
Having a kid with special needs is like that. If you don't have one, you don't get it. Those who thought that their child might have had autism do not understand what it is like to have a child who actually has autism. The fear of the possibility and the horror of actually having it be reality are two different things.
I can recall when I first realized that my fears were no longer unfounded. I would wake up every morning feeling pretty good, and thinking it was just a nightmare. Then as I would get some sense about me, this weight would drop on my chest, and I would realize that it was not a bad dream after all, it was my life.
The hardest parts now are the unknowns. Autism can manifest itself in so many different ways. I like to call it the "snowflake" disorder - because no two kids seem to be identical. This is one of the subtle nuances of the disorder that, I find, make it more difficult. No one knows any child's fate, but it feels like their are even more unknown unknowns with a child with autism. Can research and medicine advance fast enough in his lifetime to effect great possibilities for him?
Zach is only two. I don't think you can get a handle on the personalities and possibilities of any two year old. Surely, Sophie has surprised me with her interests and abilities when I look back on who I thought she was at the tender age of 2. Zach smiles and seems bright. But what things are bubbling in that mind of his that I haven't seen yet? The great unknown.
The Unknown
As we know,
There are known knowns.
There are things we know we know.
We also know
There are known unknowns.
That is to say
We know there are some things
We do not know.
But there are also unknown unknowns,
The ones we don't know
We don't know.
—Donald Rumsfeld, Feb. 12, 2002, Department of Defense news briefing
Sometimes people try and be too understanding. They try and show that they understand what we are going through even though we know darn well that they haven't a clue. For those with children, have you ever had a person who doesn't have children explain to you how to handle your children? People without children make the best parents.
Having a kid with special needs is like that. If you don't have one, you don't get it. Those who thought that their child might have had autism do not understand what it is like to have a child who actually has autism. The fear of the possibility and the horror of actually having it be reality are two different things.
I can recall when I first realized that my fears were no longer unfounded. I would wake up every morning feeling pretty good, and thinking it was just a nightmare. Then as I would get some sense about me, this weight would drop on my chest, and I would realize that it was not a bad dream after all, it was my life.
The hardest parts now are the unknowns. Autism can manifest itself in so many different ways. I like to call it the "snowflake" disorder - because no two kids seem to be identical. This is one of the subtle nuances of the disorder that, I find, make it more difficult. No one knows any child's fate, but it feels like their are even more unknown unknowns with a child with autism. Can research and medicine advance fast enough in his lifetime to effect great possibilities for him?
Zach is only two. I don't think you can get a handle on the personalities and possibilities of any two year old. Surely, Sophie has surprised me with her interests and abilities when I look back on who I thought she was at the tender age of 2. Zach smiles and seems bright. But what things are bubbling in that mind of his that I haven't seen yet? The great unknown.
The Unknown
As we know,
There are known knowns.
There are things we know we know.
We also know
There are known unknowns.
That is to say
We know there are some things
We do not know.
But there are also unknown unknowns,
The ones we don't know
We don't know.
—Donald Rumsfeld, Feb. 12, 2002, Department of Defense news briefing
Tuesday, December 16, 2008
I just received the book, "More Than Words" by Fern Sussman. It was recommended by the folks at Yale, our SLP, and a few books and websites we researched. Prior to going to Yale, I had already looked into purchasing the book.
Its basis is to help parents promote communication and social skills in children with ASD. Only through page 18 so far. They recommend to read the book in its entirety first, which I plan to do. Thumbing through the book, I notice it gives lots of practical suggestions and explains the underlying concepts along with the pragmatics.
But can I get Zach to say "ho ho ho" by Christmas?
Its basis is to help parents promote communication and social skills in children with ASD. Only through page 18 so far. They recommend to read the book in its entirety first, which I plan to do. Thumbing through the book, I notice it gives lots of practical suggestions and explains the underlying concepts along with the pragmatics.
But can I get Zach to say "ho ho ho" by Christmas?
Monday, December 15, 2008
The apple of my eye...
Roughly 4 weeks ago, Zach started to put the "pop" in Pop Goes the Weasel when I sing it to him. He consistently has done this - and loves doing it - even with an audience. This makes Momma so-o-o happy. Especially since he consistently does it. This is a big deal folks.
Then he saw a picture of the Sesame Street sign and said "Elmo". I then grabbed a picture of Elmo - and he said "Elmo" then too. Whoa! Spontaneous labeling AND consistency.
A few evenings ago, he told Steve to "wake up" when Steve was pretending to sleep. We weren't sure at first, but then he repeated it again, when Steve pretended to go back to sleep. WHOA!
I think it is so cool when he says phrases, but Steve has reminded me that he really isn't saying sentences, as explained to us at Yale. The term is called gestalt language and means a phrase is learned in its entirety as one concept without comprehending the individual words. Thus, my working with him to say "up" when he would like me to lift him into my arms is still not there yet. However, I still appreciate his achievement; spontaneous, consistent, socially appropriate language and not just a noun or a label!
Zach's SLP canceled for today. So today after dropping Sophia at her preschool, we took a trip to Wegman's (one of the great things about living in upstate NY) to go shopping. We brought our returnable cans and Zach loved putting them in the machine to be crunched. He really seems to be where he should be with his motor skills - I hope that stays the same.
As we walked in the store - a table filled with well polished apples was nearly straight ahead. Zach began repeating "apple", "apple", "apple" louder and louder. I quickly grabbed one, ran into the women's room, washed it, and zipped back out and gave it to him with tears in my eyes. My mother-in-law was there to witness the whole event. I kept on repeating to myself, "I will not cry in Wegmans, I will not cry in Wegmans". Never heard him say apple before. And he wanted one. Can more words get added to make such requests?
His occupational therapist came and no real language came out - although last week when he first met her, and she played a game of knocking, he said "Who's there?". Who is there? Who is my little boy? Can I get him to say more to find out? I can see so much in him without speech - there can only be more. I can't wait to find out.
Then he saw a picture of the Sesame Street sign and said "Elmo". I then grabbed a picture of Elmo - and he said "Elmo" then too. Whoa! Spontaneous labeling AND consistency.
A few evenings ago, he told Steve to "wake up" when Steve was pretending to sleep. We weren't sure at first, but then he repeated it again, when Steve pretended to go back to sleep. WHOA!
I think it is so cool when he says phrases, but Steve has reminded me that he really isn't saying sentences, as explained to us at Yale. The term is called gestalt language and means a phrase is learned in its entirety as one concept without comprehending the individual words. Thus, my working with him to say "up" when he would like me to lift him into my arms is still not there yet. However, I still appreciate his achievement; spontaneous, consistent, socially appropriate language and not just a noun or a label!
Zach's SLP canceled for today. So today after dropping Sophia at her preschool, we took a trip to Wegman's (one of the great things about living in upstate NY) to go shopping. We brought our returnable cans and Zach loved putting them in the machine to be crunched. He really seems to be where he should be with his motor skills - I hope that stays the same.
As we walked in the store - a table filled with well polished apples was nearly straight ahead. Zach began repeating "apple", "apple", "apple" louder and louder. I quickly grabbed one, ran into the women's room, washed it, and zipped back out and gave it to him with tears in my eyes. My mother-in-law was there to witness the whole event. I kept on repeating to myself, "I will not cry in Wegmans, I will not cry in Wegmans". Never heard him say apple before. And he wanted one. Can more words get added to make such requests?
His occupational therapist came and no real language came out - although last week when he first met her, and she played a game of knocking, he said "Who's there?". Who is there? Who is my little boy? Can I get him to say more to find out? I can see so much in him without speech - there can only be more. I can't wait to find out.
Thursday, December 11, 2008
Never when I am around.
So I heard my son did things today in his therapy that I cannot believe. Here are some excerpts from our speech language pathologist (SLP):
"He engaged well and let me re-direct him several times. He also produced some spontaneous words to label (ie; pig, car, choo choo, bubbles, in) and imitated several more words. :) :) :)
He also said 'bye' unprompted and with a smile. Eye contact was sporadic but enough so that he was able to stay with me.
His session was the highlight of my morning! "
We needed that after all the disappointments we have had to face. Now to get this ball rolling a little faster.
"He engaged well and let me re-direct him several times. He also produced some spontaneous words to label (ie; pig, car, choo choo, bubbles, in) and imitated several more words. :) :) :)
He also said 'bye' unprompted and with a smile. Eye contact was sporadic but enough so that he was able to stay with me.
His session was the highlight of my morning! "
We needed that after all the disappointments we have had to face. Now to get this ball rolling a little faster.
Tuesday, December 9, 2008
Pavlov's dog and the mutts in the insurance industry
So one of the key recommendations that came out of our visit to Yale was treatment options. There are several forms of therapies out there that have shown to be effective on various levels. There are traditional therapies such as speech, occupational therapy, physical therapy, and special education. My estimation is that these treat symptoms of ASD (autism spectrum disorders) but not the autism itself. Kids on the spectrum frequently have issues in one or more of those areas - Zach has definite issues with speech which was the impetus that lead us down this path in the first place.
Other therapies more specific to ASD include TEACHH, Floortime/DIR, and ABA. I know - acronym city. I'll probably get a post in here that is all acronyms at some point. Anyhow, ABA which stands for applied behavior analysis is what Yale recommended for Zach. " Applied behavior analysis (ABA) interventions focus on teaching tasks one-on-one using the behaviorist principles of stimulus, response and reward,and on reliable measurement and objective evaluation of observed behavior." (plag'ed from Wikipedia) . I have read about all of these therapies and the plethora of others. ABA certainly appeared to make the most sense for Zach based on his current needs, and also happened to have the most scientific evidence to back up its efficacy. Their recommendation made sense and we will start down a path to getting him this therapy.
The folks at Yale went and researched the Syracuse area for ABA therapists for us, which was much appreciated. They came across the SU Parent Project at Syracuse University and we have begun an initial contact with them to see what they can offer us. We also contacted our Earlty Intervention service coordinator through the county to see what was available through the various agencies. The service coordinator didn't think that we would be able to get covered the amount of services that the folks at Yale recommended via Early Intervention. We anticipated this. And thus began our unpleasantries with our health insurance administrators.
Steve had contacted our HR department regarding getting a copy of our policy to see what was covered. We were told that we didn't have the policy that Excellus Blue Bross Blue Shield held it. Our company is "self insured". Don't let that term delude you into thinking they can tell us what is covered though. They told us to contact BCBS directly. I did that. I was told that asking to see if ABA was covered wouldn't be sufficient- they required a 5 digit procedure code (not to be confused with a diagnosis code). OK. So I google to see what is out there in terms of codes that people have used for ABA and I call BCBS again with my list of codes. After a a little research, I was told that coverage "depends" on this "other" policy. They give me access to the policy. I read it. It makes things about as clear as mud. *sigh*
So, Steve decides to once again employ the services of our HR benefits rep. That evening, Steve was unusually quiet. I thought that something the kids had done had set him off. He refused to talk to me about what was plaguing him. As bedtime approached, he finally was calm enough to disclose that our HR rep said that there would be no coverage. He was so distraught, and I totally understood why. I had to remind him that this is how the "real world" of insurance works - if you asked them, they probably would tell you a flu shot was not covered - that doesn't mean that it really isn't, you just have to find out the right way of asking. We would find a way. We will take care of this one way or another. We began to consult a family member for a child advocacy lawyer in our area just in case. I really don't want to go there.
Can you imagine what it feels like to be told a diagnosis by one of the world's recognized researchers (she is helping to write the next revision of the DSM) in developmental disorders that your child has an ASD, that he requires 25 hours of this sort of ABA therapy, that time is of the essence - and then have a bunch of people who are able to help your precious child get this treatment seem to give you nothing but bad news or roadblocks or shrugs?
BCBS covers ABA therapy in Minnesota. (Huh?) I can barely handle the winters in central NY - we are not about to move there. Another odd fact, the Department of Health of New York State recognizes and recommends this therapy as a treatment for ASD. Hmmm. What will we do? More research of course.
Let's hope the good folks at Early Intervention are going to be able to help us out. $80, 000 a year is just a little salty for us.
This all leads me to a a deeper understanding of the gifts we have been given: We are by no means rich, nor are we the smartest people in the world (although Steve is pretty damn smart if you ask me) but what do people do who don't have the resources we have to deal with these situations? I must say a prayer for them. I ask that everyone who reads this do the same.
Other therapies more specific to ASD include TEACHH, Floortime/DIR, and ABA. I know - acronym city. I'll probably get a post in here that is all acronyms at some point. Anyhow, ABA which stands for applied behavior analysis is what Yale recommended for Zach. " Applied behavior analysis (ABA) interventions focus on teaching tasks one-on-one using the behaviorist principles of stimulus, response and reward,and on reliable measurement and objective evaluation of observed behavior." (plag'ed from Wikipedia) . I have read about all of these therapies and the plethora of others. ABA certainly appeared to make the most sense for Zach based on his current needs, and also happened to have the most scientific evidence to back up its efficacy. Their recommendation made sense and we will start down a path to getting him this therapy.
The folks at Yale went and researched the Syracuse area for ABA therapists for us, which was much appreciated. They came across the SU Parent Project at Syracuse University and we have begun an initial contact with them to see what they can offer us. We also contacted our Earlty Intervention service coordinator through the county to see what was available through the various agencies. The service coordinator didn't think that we would be able to get covered the amount of services that the folks at Yale recommended via Early Intervention. We anticipated this. And thus began our unpleasantries with our health insurance administrators.
Steve had contacted our HR department regarding getting a copy of our policy to see what was covered. We were told that we didn't have the policy that Excellus Blue Bross Blue Shield held it. Our company is "self insured". Don't let that term delude you into thinking they can tell us what is covered though. They told us to contact BCBS directly. I did that. I was told that asking to see if ABA was covered wouldn't be sufficient- they required a 5 digit procedure code (not to be confused with a diagnosis code). OK. So I google to see what is out there in terms of codes that people have used for ABA and I call BCBS again with my list of codes. After a a little research, I was told that coverage "depends" on this "other" policy. They give me access to the policy. I read it. It makes things about as clear as mud. *sigh*
So, Steve decides to once again employ the services of our HR benefits rep. That evening, Steve was unusually quiet. I thought that something the kids had done had set him off. He refused to talk to me about what was plaguing him. As bedtime approached, he finally was calm enough to disclose that our HR rep said that there would be no coverage. He was so distraught, and I totally understood why. I had to remind him that this is how the "real world" of insurance works - if you asked them, they probably would tell you a flu shot was not covered - that doesn't mean that it really isn't, you just have to find out the right way of asking. We would find a way. We will take care of this one way or another. We began to consult a family member for a child advocacy lawyer in our area just in case. I really don't want to go there.
Can you imagine what it feels like to be told a diagnosis by one of the world's recognized researchers (she is helping to write the next revision of the DSM) in developmental disorders that your child has an ASD, that he requires 25 hours of this sort of ABA therapy, that time is of the essence - and then have a bunch of people who are able to help your precious child get this treatment seem to give you nothing but bad news or roadblocks or shrugs?
BCBS covers ABA therapy in Minnesota. (Huh?) I can barely handle the winters in central NY - we are not about to move there. Another odd fact, the Department of Health of New York State recognizes and recommends this therapy as a treatment for ASD. Hmmm. What will we do? More research of course.
Let's hope the good folks at Early Intervention are going to be able to help us out. $80, 000 a year is just a little salty for us.
This all leads me to a a deeper understanding of the gifts we have been given: We are by no means rich, nor are we the smartest people in the world (although Steve is pretty damn smart if you ask me) but what do people do who don't have the resources we have to deal with these situations? I must say a prayer for them. I ask that everyone who reads this do the same.
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