Tonight my heart kindles and flames with a hope I have not felt for a long time. I am also overwhelmed with feelings of panic and terror.
We have decided to send AJ to pre-school. This may not seem like a big deal, right? The thing is, we are going against the establishment, bulking the man, and sending him to a Montessori based learning program specializing in Early Intervention for special needs children. It sounds so good when I put it that way but it is not where the government established credentials have been pushing us to send him.
Let me back up. We have been trying (read: fighting) with the government program in California that handles services for special needs children called the Regional Center (RC). Federal Law mandates that children 1-3 years should be given the services needed, free of charge, to help them overcome their disabilities. However, these programs are run and structured by the individual state as they see fit. For those who don't know, California is in a horrendous financial crisis right now and has been for a little while. So, services are very, very hard to get because the need is so great and the money is so short. The RC that allocates the money for these services bases itself on the credence that they are the last resort when the Money for services is being paid out. Therefore, the counselor we are working with who is supposed to be putting us through the system is inclined to push us towards a program called LEAP which is paid for in conjunction with the school district. So of course they want us to go there, that way they are spending less out of their budget.
Don't get me wrong, we gave the LEAP program a chance. We visited the classroom, met the teacher and even saw some of the children coming to school. We were specifically asked not to bring AJ when we visited. Many, many things about this program just felt off, somehow wrong for us and the way we want AJ to grow and learn. It is a very regimented system, requiring all the children to learn the principles and routines assigned to all of them. They are trained in a "Pavlov Dog" response system where they are asked to do a task and then they get a treat when they do it right. It works, of course, because everyone wants a treat for doing something right. It does not seem to teach these kids to work within real world circumstances. The major things that really turned us off were :
1) Of all of the children who arrived while we were there, only one was actually happy to be there, the rest of the children clung to their parents as if they were drowning. The were not new to the classroom, as could be the explanation for the uncertainty of being left.
2) I asked if they used sign language within the classroom as a communication alternative since most of these children don't speak much. The teacher, a Speach Pathologist, said they did not use sign because "Sign goes away and not everyone understands it anyway." Hmmm . . . I object to this because, for now, that is the only way that AJ communicates with us.
This new school, called Newport Montessori at Phases, is a completely different approach, atmosphere, and overall feeling of right. We were welcome to tour the facility, twice, with AJ both times. AJ loved it. He did not even venture beyond the first room the first visit, he was so enchanted with the toys and the teacher within. The Early Intervention Teacher was there as well as the Montessori Certified Teacher for both tours, answering our endless questions.
As most of you know, we are "out of the box" thinkers when it comes to bringing our child back from the darkness. We are treating the whole child in order to help him the best way we can. Special diets and supplements have helped AJ develop so much. We know this because we have been fighting for services since January and still have none beyond the speech therapy we are paying for privately. The teachers at Phases knew about every supplement we have tried and the diets we are using. They were not shocked nor did they try to warn us away from our approach.
So we are doing this. We will be sending AJ to Phases starting next Tuesday. Four days a week for 3 hours each day. I am so excited about this decision. I hope that AJ will improve even more as he integrates into this program. I am terrified as well. It has always been him and I. We hang together, we spend every day together. I am now going to drop him off and trust someone else with his care, to know when he is sad, scared, or overstimulated. This will be hard for me even though we think this is the best idea. We are also going to be paying for this on our own unless we can convince the RC to fund for this program instead of LEAP. That is a huge financial burden we will be taking on as we get ready to welcome a new member to our family next month.
Keep your fingers crossed and pray for us all.
Thursday, May 20, 2010
Tuesday, May 4, 2010
Potty Training, the ER, and my wallet
For those of you who don't know, we decided yesterday was going to be the "big day" to begin potty training for AJ. Well, let me tell you, yesterday was rough! 14 count them, 14 accidents yesterday and 4 loads of wash. Whew! We made it through but by the end of day Andrew and I decided that we would put him in Pull-ups to sleep. Even though we had gone cold turkey all day, I was exhausted by the end of the day and Andrew's back (which has been acting up lately) was really hurting him. So, Pull-ups for the night.
BEST decision we made! You see, at 1:00am Andrew woke up in so much pain that we debated calling an ambulance. We hemmed, hawed, and generally stalled until 4:00am when I made the decision. We were going to the ER! I called my guardian angels (Sam and Holly you know who you are) and Holly was there in 20min. I must give props for the 20 min since she was dressed and ready to go to work and arrived at our door in 20min! AJ slept blissfully through all of this and we left him in Holly's expert care.
I made the decision on the drive to the ER that potty training gets shelved for now and we would try again later. I got home around 6:15 this morning to relieve Holly so she could go to work. Little boy was awake and his Pull-up was full. So I got him dressed and we then got the call that Andrew was being discharged after being pumped full of drugs. I packed us up into the car (AJ in a diaper)and we went to pick up Andrew.
Upon arriving we discover that Andrew is not leaving and can't stand up so we will be staying a little while. Little boy started getting fussy, whiney, etc. My smart, smart boy (she says with complete bias) was completely dry! He got on board and was wondering why we were not. In a public restroom, outside his safety zone, my great little boy went potty 3 times!
OH! And to the @#@#%%#$% person who stole my wallet while I was getting pain meds for my husband, you will get yours! Karma comes around.
On one of my darkest days, my son continues to be a shining light.
Wish me a better day tomorrow!
BEST decision we made! You see, at 1:00am Andrew woke up in so much pain that we debated calling an ambulance. We hemmed, hawed, and generally stalled until 4:00am when I made the decision. We were going to the ER! I called my guardian angels (Sam and Holly you know who you are) and Holly was there in 20min. I must give props for the 20 min since she was dressed and ready to go to work and arrived at our door in 20min! AJ slept blissfully through all of this and we left him in Holly's expert care.
I made the decision on the drive to the ER that potty training gets shelved for now and we would try again later. I got home around 6:15 this morning to relieve Holly so she could go to work. Little boy was awake and his Pull-up was full. So I got him dressed and we then got the call that Andrew was being discharged after being pumped full of drugs. I packed us up into the car (AJ in a diaper)and we went to pick up Andrew.
Upon arriving we discover that Andrew is not leaving and can't stand up so we will be staying a little while. Little boy started getting fussy, whiney, etc. My smart, smart boy (she says with complete bias) was completely dry! He got on board and was wondering why we were not. In a public restroom, outside his safety zone, my great little boy went potty 3 times!
OH! And to the @#@#%%#$% person who stole my wallet while I was getting pain meds for my husband, you will get yours! Karma comes around.
On one of my darkest days, my son continues to be a shining light.
Wish me a better day tomorrow!
Friday, April 9, 2010
RANT . . .
Please allow me to rant for a minute . . .
As anyone knows, when dealing with the government, there are many hoops you have to jump through in order to get what you need or want. This is strongly brought home to me today but allow me to give you a little background first.
Since AJ was 18 months old, we have known there was some sort of problem although now we know it as Autism, then we knew there was a speech delay. So the battery of tests and assessments began.
18 months- Speech Evaluation through Kaiser Health Insurance (we were told to bring him back at 2 years even though he already showed major delays because "By then he will be so much further")
2 years- Speech Evaluation through Kaiser Health Insurance (Still showed significant delays. No follow up)
2 years- Finally evaluated at Regional Center (Government fielding house for all disabilities) with an Occupational Therapist and Intake Case Manager (Showed all markers for needed immediate therapy including speech and behavior)
2 years 1 month- Evaluation with Psychologist to determine if he was autistic (determination was yes)
2 years 1 month- Evaluation with Special Needs Pediatrician at Kaiser Health Insurance to determine that he needed services, that he was autistic and then to get denial for those services
2 years 2 months- Evaluation at a play class by the Psychologist to further determine that he is autistic.
2 years 2 months- finally assigned a permanent case manager who signed him up for the waiting list for a pre-school program that is full integration of speech, behavior, and occupational therapies 5 days a week each morning.
The school mentioned above sounded like a perfect solution. AJ really needs a lot of attention and focused therapy, a lot more than I can give him with my knowledge base. Of course there are more hoops to jump through in order to get into this program. One being a 3-part, 3 week, mandatory class that the parent(s) have to take before any therapies can begin. This class was never mentioned by our first case manager which put us even further behind.
So, I am now signed up for the class and have been to one session already. I tried to contact my case manager in order to be sure things were moving along with the other hoops that needed jumping so that we would be all set when I was done with these classes. She is on medical leave until mid-may!!!! So again, we hit stagnant!
I have since contacted her manager. Another hoop we need to jump through for the class is to have an in-home evaluation done by yet another company because the 5 evaluations listed above are not enough. Oh yeah, and the person who does the evaluations for that company in this capacity is now on vacation until April 16th!!!
Further into the conversation with our new supervisor/ case manager (now our third one) she starts looking at the waiting list for this pre-school program to see if we get all our ducks in a row as I have listed above when we might get in. AUGUST! We can't get in until August!! I am so angry, so very, VERY angry! Meanwhile we are shelling out of pocket for private speech therapy because my son needs something, something to help him. Because every day that he hits himself, cries because he can't communicate, he breaks my heart in two.
I just want to hit something! My poor little guy does not understand why I am stomping around the house and slamming doors and being not so happy with him when he does the smallest thing wrong. Pray for me. Give me the strength and power to see this through. Because he is worth it, even if others don't care.
Dorothy
As anyone knows, when dealing with the government, there are many hoops you have to jump through in order to get what you need or want. This is strongly brought home to me today but allow me to give you a little background first.
Since AJ was 18 months old, we have known there was some sort of problem although now we know it as Autism, then we knew there was a speech delay. So the battery of tests and assessments began.
18 months- Speech Evaluation through Kaiser Health Insurance (we were told to bring him back at 2 years even though he already showed major delays because "By then he will be so much further")
2 years- Speech Evaluation through Kaiser Health Insurance (Still showed significant delays. No follow up)
2 years- Finally evaluated at Regional Center (Government fielding house for all disabilities) with an Occupational Therapist and Intake Case Manager (Showed all markers for needed immediate therapy including speech and behavior)
2 years 1 month- Evaluation with Psychologist to determine if he was autistic (determination was yes)
2 years 1 month- Evaluation with Special Needs Pediatrician at Kaiser Health Insurance to determine that he needed services, that he was autistic and then to get denial for those services
2 years 2 months- Evaluation at a play class by the Psychologist to further determine that he is autistic.
2 years 2 months- finally assigned a permanent case manager who signed him up for the waiting list for a pre-school program that is full integration of speech, behavior, and occupational therapies 5 days a week each morning.
The school mentioned above sounded like a perfect solution. AJ really needs a lot of attention and focused therapy, a lot more than I can give him with my knowledge base. Of course there are more hoops to jump through in order to get into this program. One being a 3-part, 3 week, mandatory class that the parent(s) have to take before any therapies can begin. This class was never mentioned by our first case manager which put us even further behind.
So, I am now signed up for the class and have been to one session already. I tried to contact my case manager in order to be sure things were moving along with the other hoops that needed jumping so that we would be all set when I was done with these classes. She is on medical leave until mid-may!!!! So again, we hit stagnant!
I have since contacted her manager. Another hoop we need to jump through for the class is to have an in-home evaluation done by yet another company because the 5 evaluations listed above are not enough. Oh yeah, and the person who does the evaluations for that company in this capacity is now on vacation until April 16th!!!
Further into the conversation with our new supervisor/ case manager (now our third one) she starts looking at the waiting list for this pre-school program to see if we get all our ducks in a row as I have listed above when we might get in. AUGUST! We can't get in until August!! I am so angry, so very, VERY angry! Meanwhile we are shelling out of pocket for private speech therapy because my son needs something, something to help him. Because every day that he hits himself, cries because he can't communicate, he breaks my heart in two.
I just want to hit something! My poor little guy does not understand why I am stomping around the house and slamming doors and being not so happy with him when he does the smallest thing wrong. Pray for me. Give me the strength and power to see this through. Because he is worth it, even if others don't care.
Dorothy
Wednesday, March 3, 2010
A bit more information . . .
Dear faithful readers,
After last night's post I am sure you understand why I have not been writing these last few months. We are fighting the good fight to treat AJ and bring him back but more on that later. I wanted to back track and fill you in from the beginning.
In October, my mother-in-law (bless her) gave us 2 books called "Special Diets for Special Kids Volumes 1 & 2". She said the diets she had read about might help with AJ's speech problems and to give them a look. I shrugged, stowed them on a shelf and forgot about them.
A couple of weeks later, I was on a play-date at a friend's house. She has a little girl who is 3.5 months younger than AJ. She has always been a super advanced child, walked early, talked early, and is just an overall amazing kid. She sat on the couch reading a book full of animal pictures with another Mommy friend of ours. As this mommy asked the girl to point at a particular animal (zebra for example) the little girl did so with such precision and accuracy I felt jealous. My son has never done that, even with me who he seems to "hear" the most.
This got me thinking. That night I pulled the first book down and began to read. The beginning of this book starts with the author's own story of trying to help her son who was diagnosed with autism. I began to cry as I read this little boy's story. I was reading bullet points of AJ's life!! This scared and terrified me. This is when the awareness and the first trickles of real fear began to take hold. My husband was sitting beside me and we went through the information together. We agreed to try the diet as a start and see what happens. That was November 11, 2009.
So much has changed since that night. I will fill you in as I get time and hopefully this will help me get a clearer picture of it all.
Thanks for reading,
Dorothy
After last night's post I am sure you understand why I have not been writing these last few months. We are fighting the good fight to treat AJ and bring him back but more on that later. I wanted to back track and fill you in from the beginning.
In October, my mother-in-law (bless her) gave us 2 books called "Special Diets for Special Kids Volumes 1 & 2". She said the diets she had read about might help with AJ's speech problems and to give them a look. I shrugged, stowed them on a shelf and forgot about them.
A couple of weeks later, I was on a play-date at a friend's house. She has a little girl who is 3.5 months younger than AJ. She has always been a super advanced child, walked early, talked early, and is just an overall amazing kid. She sat on the couch reading a book full of animal pictures with another Mommy friend of ours. As this mommy asked the girl to point at a particular animal (zebra for example) the little girl did so with such precision and accuracy I felt jealous. My son has never done that, even with me who he seems to "hear" the most.
This got me thinking. That night I pulled the first book down and began to read. The beginning of this book starts with the author's own story of trying to help her son who was diagnosed with autism. I began to cry as I read this little boy's story. I was reading bullet points of AJ's life!! This scared and terrified me. This is when the awareness and the first trickles of real fear began to take hold. My husband was sitting beside me and we went through the information together. We agreed to try the diet as a start and see what happens. That was November 11, 2009.
So much has changed since that night. I will fill you in as I get time and hopefully this will help me get a clearer picture of it all.
Thanks for reading,
Dorothy
Tuesday, March 2, 2010
What can I do?
What do you do when you are told your child has a disease? A disease that has no cure? That it is something that you can't fix. When more and more each day you see the glaring "different" that your child is from all the others. Sure they all talked at different speeds, they walked at different ages, but now, they even fight over the same toy.
My son does not.
Does not talk.
Does not fight over the toy because someone else has it. He does not even seem to know that the other child is there, so fixated on the object that he can't see past it. What can I do? He does not sleep, at least with any regularity.
Will he ever see me and say"Mama!" with joy instead of "mamamama" with no recognition? I don't know.
Most days I do OK with that dreaded word . . . AUTISM, but tonight? Tonight I cry for what was, the potential of that little boy I gave birth to, who we may never find again. I want my baby back! Help me find the strength to fight.
I love you my son,
Mama
My son does not.
Does not talk.
Does not fight over the toy because someone else has it. He does not even seem to know that the other child is there, so fixated on the object that he can't see past it. What can I do? He does not sleep, at least with any regularity.
Will he ever see me and say"Mama!" with joy instead of "mamamama" with no recognition? I don't know.
Most days I do OK with that dreaded word . . . AUTISM, but tonight? Tonight I cry for what was, the potential of that little boy I gave birth to, who we may never find again. I want my baby back! Help me find the strength to fight.
I love you my son,
Mama
Friday, December 11, 2009
The Ache
My husband travels a lot for work. I do mean a lot! Days like these, when the baby is sick and so am I, I miss him with and ache that sometimes threatens to overwhelm me. I strive to do what I can to take care of both of my children, the 2 year old and the one growing inside me. We are having a mellow day full of movies and naps. And we pray every night for his safe return home. Unlike most people, my Sunday can not get here soon enough.
I miss you dear,
D.
I miss you dear,
D.
Monday, September 21, 2009
Busy, busy!
Dearest Loyal Readers,
I momentarily fell off the radar but I am back now. Pictures below of what I have been working on. Halloween is almost here already (at least in proportion to the work I need to get done).
So, you have seen this little guy before (notice that AJ is still little in this photo). I have had several requests to make another elephant for this year so I now have one in stock but used the pictures from last year.
This beauty is also a remake of last year. AJ actually wore this as his Halloween costumes last year. I loved it so much that I made one for my Etsy store for this year. The fabric is slightly different than the original. I made AJ's personal one out of scraps that were being thrown away from the LA Opera's Rosenkavalier. Not likely to find that fabric again so now this one is made from corduroy that I found in downtown LA.
I am now working on two chipmunk costumes that someone on Etsy has commissioned me to build! I am really excited about these. The Mommy wants "Chip and Dale" from Disney. They are going to be in fur. I am trying to be excited about that part but well, yuck. It just sheds so much.
Other projects are also in the works which I will tell you about soon!
Dorothy
I momentarily fell off the radar but I am back now. Pictures below of what I have been working on. Halloween is almost here already (at least in proportion to the work I need to get done).
So, you have seen this little guy before (notice that AJ is still little in this photo). I have had several requests to make another elephant for this year so I now have one in stock but used the pictures from last year.
This beauty is also a remake of last year. AJ actually wore this as his Halloween costumes last year. I loved it so much that I made one for my Etsy store for this year. The fabric is slightly different than the original. I made AJ's personal one out of scraps that were being thrown away from the LA Opera's Rosenkavalier. Not likely to find that fabric again so now this one is made from corduroy that I found in downtown LA.
I am now working on two chipmunk costumes that someone on Etsy has commissioned me to build! I am really excited about these. The Mommy wants "Chip and Dale" from Disney. They are going to be in fur. I am trying to be excited about that part but well, yuck. It just sheds so much.
Other projects are also in the works which I will tell you about soon!
Dorothy
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