How many people did you have over your house today? We had 8 - and that does not include the residents. There are so many people coming in and out of our house, no wonder it's trashed all the time.
We had the new therapist come today - what is it with all the tall chicks? Yup, she is over six foot. So that makes 4 women besides myself over 5 foot 9 coming in and out of my house. Such a strange phenomenon. Anyhow - no real training needed, she knows ABA pretty well and it sounds like she can slide right in. I only wish she was not just here for the summer. Zach should start receiving closer to 30 hours a week now. I pray that this will make a difference.
Another family issue had me up until 1 am the other night. I can barely handle my nuclear family, the extended family thing has me just tired. I realized I just don't have anything to give at this point.
At work, I was requested to start a support group for people affected by ASDs. So far there has been only minimal interest - 6 people. I don't want to be the leader, but no one else does either. Oh crud. Can we have a leaderless group?
Zach is doing OK. I was going to say that there are no emerging skills that I am aware of - but that is not true. It just happens to be his latest skill is subtle - and it involves him playing with toys. He really appears to play with toys appropriately - and he has a wide array of interest in toys.
Tonight Steve made arrangements to take me out to dinner. How exciting, right? We get to the restaurant, called Pascales (which I totally think jumped the shark) and get put in a booth next to a family. Kind of strange to see a family in a place like this - found it totally my luck that on a date night we would get stuck next to 4 kids. The youngest took a particular interest in us. He was asking us what we were doing, what we were eating - all the usual obnoxious questions - I asked his Mom how old he was - turns out he is 2 months older than Zach. This was rough. I cannot imagine Zach ever turning to a stranger and attempting to engage with them, let alone have such fluency in speech. If I had anything left, I would have cried on the spot. Guess being totally depleted pays off once in awhile.
Every time we attempt to get a break, something blows it. North Carolina - stolen car, date night at Pascales - young child reminding me of what should be. I hate this.
I love Zach to death - I love to hug him and play with him and spend time with him. But he is so much like having a baby and that is starting to freak me out. Can he have a good life and be so different? Is he happy? I can't tell for sure.
There are so many people in his life - and I feel like I am barely in it at times. Every free moment I have is spent cleaning the house, doing laundry, mopping floors, cooking, shopping, etc. I feel I am losing out on just enjoying my son as a child, and not just dealing with him as a child with special needs.
Let's see if I can change that. I don't want to spend so much time helping him develop that I miss him altogether. After all, he is a child first, and a child with autism next.
Saturday, June 13, 2009
Thursday, June 11, 2009
Adding another therapist
An email dropped itself in my inbox from a bulletin board post at my company. An intern had a girlfriend who followed him to Syracuse for the summer and had ABA experience and was looking for a summer gig. Of course you know that I was all over that.
She will come tomorrow for an intro and start next week if all goes well tomorrow. That will get us up to the 30-35 hours of therapy a week. As much as this sounds horrible, and feels horrible, I know that it could possibly make the difference. This will also buy me time to find someone for the fall, and to train them as necessary. Research indicates that 30-40 hours a week is what is recommended. Here we go.
That brings up the other big event of the week - our first training session was Monday. I was able to attend a little more than half of the hour and a half session - had to be out of the room to help out with wee ones, but I believe it went OK. There is so much information and technical jargon, as with any specialty. We are hoping to conduct more sessions, so this was a good first trial run. One of the things I would like to do is start regular training sessions for those interested - therapists, teachers, parents. Oddly enough I liked doing it in my home. I guess I am a weirdo.
Zach is doing OK. No major jumps that I have noticed - but a slow and steady increase in using a few words more functionally. His use of "up" and pronunciation of "up" are right on. We lost a few sessions these past few weeks due to illnesses (therapists), appointments, and using some session time for planning the training activities and preparing materials for his therapy.
I would love to see another jump in some skill sometime soon - it always helps keep the momentum going.
Pretty intense week with meetings going on just about every night. Mon- ABA training, Tue - neighborhood watch, Wed - Families for Effective Autism Treatment (totally missed), Thurs - new therapist interview (likely will reschedule).
Need to start getting the medicaid waiver paperwork accomplished. Hoping to find out what agency can best support me with the process. We have a decision to make with whether or not to stick with the home based ABA program or send Zach to a school for the fall. This is a tough one. We will lose funding if we continue the at home program, and I am trying to determine if I can get the waiver to provide some assistance with that. Without it, we are looking at a $50,000 bill for his therapy alone next year - this does not include appointments, evaluations, biomed treatments, special diets, etc. - just his services. Can anyone say YIKES?
Totally did not sleep last night - just too wigged out about everything.
One of the therapists mentioned a family with a hot tub - and that is all I can think about lately. Steve seems to dig the idea. I just have to find out how much one of those bad boys cost. Could totally use it more year round which would help tolerate the rough winters around here. Once in awhile I see a twinkle in Steve's eye - and I think I saw one when I mentioned this. I have to find a way to make this happen before the winter comes.
She will come tomorrow for an intro and start next week if all goes well tomorrow. That will get us up to the 30-35 hours of therapy a week. As much as this sounds horrible, and feels horrible, I know that it could possibly make the difference. This will also buy me time to find someone for the fall, and to train them as necessary. Research indicates that 30-40 hours a week is what is recommended. Here we go.
That brings up the other big event of the week - our first training session was Monday. I was able to attend a little more than half of the hour and a half session - had to be out of the room to help out with wee ones, but I believe it went OK. There is so much information and technical jargon, as with any specialty. We are hoping to conduct more sessions, so this was a good first trial run. One of the things I would like to do is start regular training sessions for those interested - therapists, teachers, parents. Oddly enough I liked doing it in my home. I guess I am a weirdo.
Zach is doing OK. No major jumps that I have noticed - but a slow and steady increase in using a few words more functionally. His use of "up" and pronunciation of "up" are right on. We lost a few sessions these past few weeks due to illnesses (therapists), appointments, and using some session time for planning the training activities and preparing materials for his therapy.
I would love to see another jump in some skill sometime soon - it always helps keep the momentum going.
Pretty intense week with meetings going on just about every night. Mon- ABA training, Tue - neighborhood watch, Wed - Families for Effective Autism Treatment (totally missed), Thurs - new therapist interview (likely will reschedule).
Need to start getting the medicaid waiver paperwork accomplished. Hoping to find out what agency can best support me with the process. We have a decision to make with whether or not to stick with the home based ABA program or send Zach to a school for the fall. This is a tough one. We will lose funding if we continue the at home program, and I am trying to determine if I can get the waiver to provide some assistance with that. Without it, we are looking at a $50,000 bill for his therapy alone next year - this does not include appointments, evaluations, biomed treatments, special diets, etc. - just his services. Can anyone say YIKES?
Totally did not sleep last night - just too wigged out about everything.
One of the therapists mentioned a family with a hot tub - and that is all I can think about lately. Steve seems to dig the idea. I just have to find out how much one of those bad boys cost. Could totally use it more year round which would help tolerate the rough winters around here. Once in awhile I see a twinkle in Steve's eye - and I think I saw one when I mentioned this. I have to find a way to make this happen before the winter comes.
Sunday, June 7, 2009
A brief revisit of where we are at...
I posted this to a mommy's board I belong to, and thought it might be good to post it here. Some information is new, a lot of it is stuff I have mentioned before - but a good summary of where we are at right now.
For those of you who follow our autism fight...
Zach is now able to repeat just about all words we ask him to say. His pronunciation is sometimes good, but quite often he leaves off the final consonant. His pointing is pretty good - although we sometimes have to prompt him to point at the object of his desire.Although he has a vocabulary, his language is far from functional. The two things he says independently to request are milk and up - in which he also give the sign for. Everything else is still murky.
He sort of counts to 20 - I will say one, he will say 2, I will say 3, he will say 4, sometimes he manages to go to 10 this way but quite frequently he jumps to 13 and just repeats that over and over.
Today he surprised me while in therapy by identifying a handful of letters for the therapist when she asked him what they were (she held up a cube with a letter on it and asked him "what's this?"
He still is awful when attempting to get him to follow directions. His receptive language is so low! He doesn't understand necessarily how to play with others, and avoids other children besides his sister. We will be looking into organized playgroups with other children to see if that helps.
His eye contact is sometimes good, and sometimes not. He more often appears shy than anything else.
He gives kisses and says hi and bye on command which is awesome.
25 hours of services a week (and likely maybe even 10 more to be added) is a little intense - but he has really come a far ways.
We are doing special diets and supplements which I think are adding to his progress. So that's it for now. Will attempt potty training next month. This will be interesting, no?
Saturday, June 6, 2009
YouTube video
Mark Leland video I found during an insomnia episode. Would love to see a pop artist do a version to get a broader audience. The video part of the couple splitting gets to me. I feel like autism has taken my boy, a lot of my family, some of my friends, my career, and what about my marriage? We are fighting this in so many fronts beyond the obvious.
What a friend Mark Leland must be to watch his manager go through the struggle and be able to pen a song that captures quite a bit. I feel like so many people in my life want to just ignore that this has happened. I am so grateful to those who are helping to see us through. I can definitely say that I have met some of the greatest folks out there who truly have extremely generous spirits and are there to see us through this. One day when we get to a better spot, I hope I get the chance to return the favor.
What a friend Mark Leland must be to watch his manager go through the struggle and be able to pen a song that captures quite a bit. I feel like so many people in my life want to just ignore that this has happened. I am so grateful to those who are helping to see us through. I can definitely say that I have met some of the greatest folks out there who truly have extremely generous spirits and are there to see us through this. One day when we get to a better spot, I hope I get the chance to return the favor.
Thursday, June 4, 2009
Questions....
What is it with my kids lately? (Sophia is now sick once again.)
What is sleep like and will I ever get a chance to experience it in totality?
God has given me more than I can handle, and now what? I pray, I ask for help, what else?
If a government representative has said he will do all in his power to help, isn't it my right to find out what exactly he is doing?
What is it with the notion of entitlement with people lately?
Why do people you think will be there evaporate when you really need them, and some people out of nowhere are amazingly generous?
Is blood really thicker than water?
I only have so much to give - how do I direct it?
How come I feel energized after helping someone else but am totally losing steam when trying to figure things out for myself and my family?
Is it foolish to think about a career change so dramatic that will require intense schooling when I am already barely functioning?
Are we supposed to be foolish sometimes?
Does it make people feel good to tell you that God has chosen you when you have a kid wish a special need? It surely doesn't make the parent feel any better.
Where are my fellow Christians and church members as we are going through all this?
Does God give disabilities? Is it evil? Is life just random?
He's so beautiful, he smiles so often, he even seems happy a lot - then why do I spend so much time in a state of worry?
It still feels like someone punched me in the stomach - so how come I don't cry that often?
How is Sophia being affected by this? How is Steve being affected by this? What is affecting Zach that makes him autistic?
Can I make a difference for him? Is what we are doing truly helping? Can I help others with what I know?
What is sleep like and will I ever get a chance to experience it in totality?
God has given me more than I can handle, and now what? I pray, I ask for help, what else?
If a government representative has said he will do all in his power to help, isn't it my right to find out what exactly he is doing?
What is it with the notion of entitlement with people lately?
Why do people you think will be there evaporate when you really need them, and some people out of nowhere are amazingly generous?
Is blood really thicker than water?
I only have so much to give - how do I direct it?
How come I feel energized after helping someone else but am totally losing steam when trying to figure things out for myself and my family?
Is it foolish to think about a career change so dramatic that will require intense schooling when I am already barely functioning?
Are we supposed to be foolish sometimes?
Does it make people feel good to tell you that God has chosen you when you have a kid wish a special need? It surely doesn't make the parent feel any better.
Where are my fellow Christians and church members as we are going through all this?
Does God give disabilities? Is it evil? Is life just random?
He's so beautiful, he smiles so often, he even seems happy a lot - then why do I spend so much time in a state of worry?
It still feels like someone punched me in the stomach - so how come I don't cry that often?
How is Sophia being affected by this? How is Steve being affected by this? What is affecting Zach that makes him autistic?
Can I make a difference for him? Is what we are doing truly helping? Can I help others with what I know?
Wednesday, June 3, 2009
allergist part deux
Forgot to mention that he missed 2 therapy appointments for his unproductive allergist appointment- something that does make a difference. *sigh*
Tuesday, June 2, 2009
Allergist annoyances
Gotta love them there doctors. Showed up to Zach's appointment and asked the receptionist if we could get a copy of his lab results. She had me start to fill out some sort of release form, as I turned in this special little form, she told me there was nothing to give me, they had not received copies of the test results.
So I sit down in a stupor and feel my adrenaline rise - this is the whole point of the visit - so why are we here? I scramble for my phone thinking I will call the lab - but I have no idea what the number for Upstate is. I then figure I will call someone to look it up on the Internet for me and as I am working out my scheme in my head, a nurse calls us back. We go back to a small room. We wait. 15 minutes pass, and finally a NP comes in and talks. Yup, there are no results. She leaves. We wait some more. After an HOUR AND A HALF the doctor walks in and apologizes. Just as my head was about to spin around, a secretary walks in with the results. The doctor says everything looks fine. Take these pills when his skin gets a rash and stick these drops in his eyes when he sticks his fingers in them, and go see a GI doc about the puking and food stuff.
I don't know about anyone else, but this is not only unprofessional, it is incredibly disrespectful. Zach was very irritated about being stuck in a small confined space for a long time for so long. In my job, if I had a meeting and I went into it unprepared like this, I would get roasted. How much did this cost our insurance (and ultimately us)?
I had a feeling the results would be negative - the research I had done indicated that the type of sensitivities kids on the spectrum have with food are not testable using the conventional IgE tests conducted by most traditional allergists and doctors. You probably recall the post I wrote after the initial appointment with this same doctor that discussed this IgG vs. IgE thing. I have no biology background and have not done the thorough research to really understand enough about this.
SCIENCE BIT OF THE DAY by Simpleton Leanne
What I do know is that IgG is the most abundant immunoglobulin in the body and there are four subclasses (1-4). IgG4 seems to be the particular subclass of interest. According to various published articles, some say it has a benefit in diagnosis, some do not. Diangosis of what is yet another story. My gut feeling from the preliminary research I have done is that IgG may be a valuable test for kids on the spectrum, however, enough is not known about the test and there appears to be a problem with several of the labs that conduct the test. If we did this, I would want to be very careful about who I let run the lab work.
So why am I going to these appointments? Sometimes I am not even sure. I know there was a difference when Zach started the diet in both his GI issues and his lessening of autistic symptoms, better eye contact, vocabulary, etc. I wish doctors wouldn't poo poo this stuff and would concentrate a little more on why it may appear to work. If I ruled the world...
So I sit down in a stupor and feel my adrenaline rise - this is the whole point of the visit - so why are we here? I scramble for my phone thinking I will call the lab - but I have no idea what the number for Upstate is. I then figure I will call someone to look it up on the Internet for me and as I am working out my scheme in my head, a nurse calls us back. We go back to a small room. We wait. 15 minutes pass, and finally a NP comes in and talks. Yup, there are no results. She leaves. We wait some more. After an HOUR AND A HALF the doctor walks in and apologizes. Just as my head was about to spin around, a secretary walks in with the results. The doctor says everything looks fine. Take these pills when his skin gets a rash and stick these drops in his eyes when he sticks his fingers in them, and go see a GI doc about the puking and food stuff.
I don't know about anyone else, but this is not only unprofessional, it is incredibly disrespectful. Zach was very irritated about being stuck in a small confined space for a long time for so long. In my job, if I had a meeting and I went into it unprepared like this, I would get roasted. How much did this cost our insurance (and ultimately us)?
I had a feeling the results would be negative - the research I had done indicated that the type of sensitivities kids on the spectrum have with food are not testable using the conventional IgE tests conducted by most traditional allergists and doctors. You probably recall the post I wrote after the initial appointment with this same doctor that discussed this IgG vs. IgE thing. I have no biology background and have not done the thorough research to really understand enough about this.
SCIENCE BIT OF THE DAY by Simpleton Leanne
What I do know is that IgG is the most abundant immunoglobulin in the body and there are four subclasses (1-4). IgG4 seems to be the particular subclass of interest. According to various published articles, some say it has a benefit in diagnosis, some do not. Diangosis of what is yet another story. My gut feeling from the preliminary research I have done is that IgG may be a valuable test for kids on the spectrum, however, enough is not known about the test and there appears to be a problem with several of the labs that conduct the test. If we did this, I would want to be very careful about who I let run the lab work.
So why am I going to these appointments? Sometimes I am not even sure. I know there was a difference when Zach started the diet in both his GI issues and his lessening of autistic symptoms, better eye contact, vocabulary, etc. I wish doctors wouldn't poo poo this stuff and would concentrate a little more on why it may appear to work. If I ruled the world...
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