The past couple of weeks I've been watching Brinn carefully. I'm always very sensitive to any signs of autism that she may have. I've had one major concern and I have brought it to the attention of my family and Jason and we all have noticed it. Brinn doesn't respond to her name or noises made in order to get her attention. She also avoids eye contact most of the time. This was a sign Jaden had at her age. It worried Jason and I at the time, with Jaden, but we weren't sure because the delay in speech wasn't known for sure.
So now that we are seeing it in Brinn I'm a little sad. I hope I'm just ahead of myself but I don't want to be in denial either. So we've decided to watch her carefully for the next few months and to work hard with her on talking, listening, and eye contact. Then who knows we may have to sell the house to pay for both our kids' therapy. Life never gives you a holiday.
Monday, March 16, 2009
Antibiotics?!
Jaden had a ear infection and we took him to an instacare and they perscribed Jaden cefdinir. He was on it for three days and those were the worst three days I've had in a long time. I had to call for help from my mom to get me through each of those days. Jaden has huge tantrums once a day or more some times. But this was a continual thing for the whole day. People tend not to see the huge tantrums because I always stay home. But my mom was a part of the whole experience. It was nice for me to have someone see what it is like to have an autistic child who has these sort of outbursts. My mom told me it was such an eye opener for her and she never realized what patience is necessary for these tantrums. But since these tantrums were an all day thing I was going berserk myself. Thanks to my mom's help we were able to handle the storm. We took shifts as each of our patience ran out.
We couldn't figure out why such a change in personality. The only thing I could figure out was that is coincided with his antibiotics for his ear infection. I took him off the medication and the next day he was much better. He wasn't totally normal but I could handle him for a good period of time without breaking down in tears with despair and hopelessness.
So we did some research online and found out that antibiotics can affect the symptoms of autism and some people think contribute to it. I called the doctor and he prescribed some different antibiotic that he had been on before and Jaden seemed to do well after that.
So I wonder if an antibiotic can make such a difference, what could a diet do or not do for Jaden. I've heard a lot about gluten free and dairy free diets helping autistic children. It will mean more work but I'll have to do what I can to help Jaden.
We couldn't figure out why such a change in personality. The only thing I could figure out was that is coincided with his antibiotics for his ear infection. I took him off the medication and the next day he was much better. He wasn't totally normal but I could handle him for a good period of time without breaking down in tears with despair and hopelessness.
So we did some research online and found out that antibiotics can affect the symptoms of autism and some people think contribute to it. I called the doctor and he prescribed some different antibiotic that he had been on before and Jaden seemed to do well after that.
So I wonder if an antibiotic can make such a difference, what could a diet do or not do for Jaden. I've heard a lot about gluten free and dairy free diets helping autistic children. It will mean more work but I'll have to do what I can to help Jaden.
The Bumpy Road Ahead
So since we last had that consultation we have had quite an experience. We continued to keep going to the place Jaden was going to preschool and therapy. It was the cheapest for the quality of therapy he is receiving. So since January Jaden has started to say a few more words. I should keep a tab on the side of this blog just to keep track of his words. He is doing better at trying to say words and also saying the first syllable or sounds of words.
We have increased his therapy by two more sessions. So he is attending thereapy 4 days a week Tues- Fri at a hour each session, along with 4 days of preschool at the same place for two hours each, and on Wednesdays he has preschool at the school district for an hour and a half. I have to drive to each of these places and back and it takes 25 minutes to drive to each place. I'll let you do the math. I'm sure the car is as tired as I am.
Jaden now can say: hi, no, hey, banana (some of these words don't sound exactly like the word), apple, car, night-night, bye-bye, candy, cookie, tree, see, yeah, shoes, toes, eye, nose.
I'm still waiting for mommy. I'm working hard on that word. For those mothers out there who get frustrated with your little ones be grateful that your kids can call you mommy and probably that they love you because this job is ungratifing and to only hear those words makes it worth it. But if you can't hear those words it is hard to tell if someone really appreciates the endurance and work.
And he can point to : hair, eyes, toes, mouth, belly button, nose, chin, tummy.
But we are still wondering if we are doing enough.
I would love to enroll Jaden into Autism Journeys and keep him in preschool. I've heard great things about this place. But it would cost $2,000 a month. We are already paying $1,200 a month. We have spent all our savings, and all excess income and are calling in all IOUs.
I wish we could get student loans for our autistic kids because if they get all the help they can before age 5-7 they are more likely to be mainstreamed and not have any problems. It is only a couple of years of intense spending for therapy for these kids and then they can be mainstreamed and live a normal life. But if you miss that small window it may cost more money for therapy to make the same difference in those kids' lives in the future.
We have increased his therapy by two more sessions. So he is attending thereapy 4 days a week Tues- Fri at a hour each session, along with 4 days of preschool at the same place for two hours each, and on Wednesdays he has preschool at the school district for an hour and a half. I have to drive to each of these places and back and it takes 25 minutes to drive to each place. I'll let you do the math. I'm sure the car is as tired as I am.
Jaden now can say: hi, no, hey, banana (some of these words don't sound exactly like the word), apple, car, night-night, bye-bye, candy, cookie, tree, see, yeah, shoes, toes, eye, nose.
I'm still waiting for mommy. I'm working hard on that word. For those mothers out there who get frustrated with your little ones be grateful that your kids can call you mommy and probably that they love you because this job is ungratifing and to only hear those words makes it worth it. But if you can't hear those words it is hard to tell if someone really appreciates the endurance and work.
And he can point to : hair, eyes, toes, mouth, belly button, nose, chin, tummy.
But we are still wondering if we are doing enough.
I would love to enroll Jaden into Autism Journeys and keep him in preschool. I've heard great things about this place. But it would cost $2,000 a month. We are already paying $1,200 a month. We have spent all our savings, and all excess income and are calling in all IOUs.
I wish we could get student loans for our autistic kids because if they get all the help they can before age 5-7 they are more likely to be mainstreamed and not have any problems. It is only a couple of years of intense spending for therapy for these kids and then they can be mainstreamed and live a normal life. But if you miss that small window it may cost more money for therapy to make the same difference in those kids' lives in the future.
Monday, December 15, 2008
Consultation Report
So we went to our free consultation at the autism clinic I mentioned earlier. They start the whole process by telling you how great they are and how much your child needs them. Both statements are very true. The clinic was amazing in what they offered and, yes, your autistic child does need the therapy and training they provide. But then they tell you you need to sell the farm in order to help your child. How much is your child worth to you? Yes my son is worth the farm but I can't sacrifice my child's well being for therapy.
They offered three packages: A package with 2 hours of therapy a week with other services, a package with 4 hours of therapy a week with the same services, and a package with 6 hours.
They recommended the 4 hour package for Jaden. But that package costs $24,000. Where was I suppose to get money like that being middle class. They also suggested seeing their speech pathologist which costs $150/hour once a week.
The other services were nice perks for the rich who could afford it but I just wanted the thereapy not the two monthly meetings with all the staff, the 24 hour thereapy calling service, and video review. They were nice services but I didn't want to pay $24,000 for only 4 hours of therapy a week.
We'll have to get creative in finding the help we need.
They offered three packages: A package with 2 hours of therapy a week with other services, a package with 4 hours of therapy a week with the same services, and a package with 6 hours.
They recommended the 4 hour package for Jaden. But that package costs $24,000. Where was I suppose to get money like that being middle class. They also suggested seeing their speech pathologist which costs $150/hour once a week.
The other services were nice perks for the rich who could afford it but I just wanted the thereapy not the two monthly meetings with all the staff, the 24 hour thereapy calling service, and video review. They were nice services but I didn't want to pay $24,000 for only 4 hours of therapy a week.
We'll have to get creative in finding the help we need.
Thursday, December 11, 2008
Ability to pay the price
Nothing is more frustrating than to know there is something out there that can help or even heal your child but you can't afford to buy the treatment. It really gives you appreciation for science and teachers and what they have achieved but also the importance of using your money wisely and the purpose of this life.
I love that there are people out there who knew and were interested in the study and the psychology of learning disabilities. They have an understanding of how these children see their world and their reaction to it.
Money is the energy source of getting things done in this world...either for good or for awesome. Whatever you choose for your motivation is inevitably what motivates everything you do. Whether your motivation is your family, your fame, your image, your selfishness, your love for humanity, love for the earth, or your pride it is all up to you to decide. Autism is so close to my heart right now that any help we can afford for Jaden we just might do.
Jason and I use to live off of $20 a week in New York City his first year of law school. I would walk everywhere rather than spending the $2 to go one-way to anywhere. We ate the bare minimum and going out to dinner for fun was going to 34th St. and eating at Wendy's. That was an $14 excursion with food and subway for both of us.
Now I find myself at the stores compairing the price and the necessity of the item to the price and necessity of Jaden's therapy. My indulgences always loose. I always hear my voice echo in my head, "Sorry, Jaden, you can't have therapy thay may help you learn today because I need another pair of shoes and a blouse which I already have a closet full of."
But we still can't afford the best teatment and schools for autistic children which would definitely help Jaden. That is where despair creeps in.
I love that there are people out there who knew and were interested in the study and the psychology of learning disabilities. They have an understanding of how these children see their world and their reaction to it.
Money is the energy source of getting things done in this world...either for good or for awesome. Whatever you choose for your motivation is inevitably what motivates everything you do. Whether your motivation is your family, your fame, your image, your selfishness, your love for humanity, love for the earth, or your pride it is all up to you to decide. Autism is so close to my heart right now that any help we can afford for Jaden we just might do.
Jason and I use to live off of $20 a week in New York City his first year of law school. I would walk everywhere rather than spending the $2 to go one-way to anywhere. We ate the bare minimum and going out to dinner for fun was going to 34th St. and eating at Wendy's. That was an $14 excursion with food and subway for both of us.
Now I find myself at the stores compairing the price and the necessity of the item to the price and necessity of Jaden's therapy. My indulgences always loose. I always hear my voice echo in my head, "Sorry, Jaden, you can't have therapy thay may help you learn today because I need another pair of shoes and a blouse which I already have a closet full of."
But we still can't afford the best teatment and schools for autistic children which would definitely help Jaden. That is where despair creeps in.
Our Travels So Far
So after I compiled the list of Jaden's symptoms I took this list to the pediatrician and he agreed that Jaden was autistic but we still needed him to be officially diagnosed. My pediatrician sent me on an unintentional wild goose chase as the numbers he gave me only worked with children with Medicaid and a research clinic that only worked with children 3 and older. Also it was just a research clinic and not a practical clinic so we couldn't get a diagnosis. So I went to see my sister's pediatrician since this doctor had an autistic son of her own and she knew the medical field of autism well. She suggested I see the state health department to get the diagnosis. And of course everything is out-of-pocket since our health insurance doesn't cover autism.
Jason bought a book called "Act Early Against Autism". The best advice the book gave was in the title. The lady who wrote the book is very bitter and only deepens the despair. A definite "do not read"!
Jason also found a preschool in the area (20 minute drive) that works with autistic children. The teacher there is amazing with these kids and they all love him. The ratio is 5 kids per teacher and they have them on a strict routine and the teachers work with the kids individualy for a period of time to focus on their particular need.
If you're interested, the preschool is called Kidsworld Preschool and the price is a little steep. It's not nearly as expensive as Pingree School of Autism ($26,000 tuition a year!) which all parents with autistic kids dream of getting their kids into. This preschool is $360 for four-days-a-week of 2 hours a day. The teacher also provides private sessions of therapy for the kids. He does charge $50 an hour which is very reasonable for those of you who aren't on Medicaid or are filthy rich. If you're filthy rich put your kids in the Pingree School of Autism because that is where you can get your doctors, researchers, special ed teachers, and therapists together to help your child with a ratio of one teacher for two kids. But the thing is someone has to pay for all the help, and insurance companies and the state won't pay so parents have to.
As I was waiting for the state health department to call me back to make an appointment with a behavioral pediatrician, my father told me about a new clinic that opened called Autisitic Journeys. Since they are just barely opening they are having free consultations and diagnosis. I immediately called and got an appointment. This clinic teaches the child's family and friends therapies and treatments so they can get the help they need at home. Just what I was looking for! I wanted to learn what the therapists knew so I could help Jaden. This clinic also privides thereapy for the kids and works with the schools that these children will and do attend.
I will have to update later about my consultation.
Jason bought a book called "Act Early Against Autism". The best advice the book gave was in the title. The lady who wrote the book is very bitter and only deepens the despair. A definite "do not read"!
Jason also found a preschool in the area (20 minute drive) that works with autistic children. The teacher there is amazing with these kids and they all love him. The ratio is 5 kids per teacher and they have them on a strict routine and the teachers work with the kids individualy for a period of time to focus on their particular need.
If you're interested, the preschool is called Kidsworld Preschool and the price is a little steep. It's not nearly as expensive as Pingree School of Autism ($26,000 tuition a year!) which all parents with autistic kids dream of getting their kids into. This preschool is $360 for four-days-a-week of 2 hours a day. The teacher also provides private sessions of therapy for the kids. He does charge $50 an hour which is very reasonable for those of you who aren't on Medicaid or are filthy rich. If you're filthy rich put your kids in the Pingree School of Autism because that is where you can get your doctors, researchers, special ed teachers, and therapists together to help your child with a ratio of one teacher for two kids. But the thing is someone has to pay for all the help, and insurance companies and the state won't pay so parents have to.
As I was waiting for the state health department to call me back to make an appointment with a behavioral pediatrician, my father told me about a new clinic that opened called Autisitic Journeys. Since they are just barely opening they are having free consultations and diagnosis. I immediately called and got an appointment. This clinic teaches the child's family and friends therapies and treatments so they can get the help they need at home. Just what I was looking for! I wanted to learn what the therapists knew so I could help Jaden. This clinic also privides thereapy for the kids and works with the schools that these children will and do attend.
I will have to update later about my consultation.
Wednesday, December 10, 2008
Something is wrong
As a baby Jaden was very high maintenance. He was very colicky and the suggestions were gripe water, different bottles, and massages. None worked. I just looked forward to the few months away when he would grow out of it. I couldn't go anywhere. He always had a screaming fit and I always felt like he was a ticking time bomb. I was desperate to get any time with peace and quite. Jason was always gone. After starting his job at the sweat-shop law firm he left at 6:00 AM and came home anytime from 10:00 PM to 2:00 AM.
I remember at Jaden's 5 month check up my doctor commented on how this is the age that babies are so much fun. I remember thinking "What is she talking about?"
Jaden was a screamer and still is but the concern set in at about 11 months when comparing him to other babies his age he wasn't saying any words, waving, or responding to his name when I called it. He seemed not to want to pay attention. I also wondered if 11-month-olds knew the concept of ignoring.
My doctor in New York was concerned. I remember lying to him saying he knew two words... but he didn't. I lied because I didn't want to believe something was wrong with Jaden. Denial is a real thing. Even in denial I shed tears out a frustration and despair as I worked with Jaden to get his attention and to say any word or sound I made. Jaden did say a couple words around 12 to 18 months but then he would never say them again. I thought I'd give him some time. He is just a late bloomer.
We moved to Utah to be near family and also to improve Jason's work hours. It was a smart move hindsight to what was in our near future. At 22 months I went to a pediatrician here and told him my concerns. He said Jaden was just choosing to ignore and was being a two-year-old. I was relieved. It gave me hope that he was okay. But I still had a feeling something was wrong and that is what kept me asking questions. So I got his hearing checked and learned he could hear just fine. With those results I went to the school district to get him speech therapy.
A couple months went by and I felt there was no improvement with his speech and his behavior was getting worse. The screaming had intensified and his tantrums turned in to destructive stampedes around the house. Chairs, toys, dishes, food, and any object he could get a hold of were thrown or tipped over. Even his little sister, Brinn, was the object to express his anger and frustration on. I was deeply concerned, frustrated, and desperate for any help for this behavior.
I was talking to my sister Kristie. Her oldest boy has autism too along with other health complications because of a stressful delivery. She told me Jaden sounds like another autistic boy she knew and that I should get him tested.
I still didn't want to believe something could be wrong. I wanted to hold onto that hope that this was something he would grow out of, but I had a feeling that there was something wrong no matter what I wanted to believe.
So I did my own research on the internet about autism and found a list of symptoms that fit Jaden's description. They are as follows:
-He doesn't have imaginative play. He only organizes and stacks his toys.
-He is very attached to a toy. His stuffed lion to be exact.
-It is hard to get eye contact with him. At times he refuses to look at you while other times he gives it freely.
-He doesn't like strangers and has a melt down when he is surrounded by people he doesn't know. Church is a joke to go to. Our weekly seats are in the foyer.
-He is very huggy and loves to be touched. I didn't think this was a symptom but it is along with not wanting to be touched. I guess moderation is the key for a normal diagnosis.
-He doesn't respond to simple commands. It seems like he is ignoring me.
-At times he squeezes hard when he gives hugs or touches things with intensity. This is because of his sensory issues with touch. His sense of touch may not be as strong as normal kids or it may be stronger.
-Also tantrums, frustration, anger, and screaming are some symptoms.
There are many symptoms for autism. It is said that if you meet one autistic person you have only met one autistic person. That is why autism is a spectrum disorder. There is a wide spectrum they can fall on and no one person is the same.
So after doing this checklist I knew this was the monster I was facing. Both Jason and I cried for the loss of our son's normal future. For the kids who will refuse to play with him. For the family we hoped he would have in the future. And for all the opportunities that we dreamed and hoped for him. But at the same time I was relieved to know what the problem was and that I knew where to start to try and help Jaden.
I remember at Jaden's 5 month check up my doctor commented on how this is the age that babies are so much fun. I remember thinking "What is she talking about?"
Jaden was a screamer and still is but the concern set in at about 11 months when comparing him to other babies his age he wasn't saying any words, waving, or responding to his name when I called it. He seemed not to want to pay attention. I also wondered if 11-month-olds knew the concept of ignoring.
My doctor in New York was concerned. I remember lying to him saying he knew two words... but he didn't. I lied because I didn't want to believe something was wrong with Jaden. Denial is a real thing. Even in denial I shed tears out a frustration and despair as I worked with Jaden to get his attention and to say any word or sound I made. Jaden did say a couple words around 12 to 18 months but then he would never say them again. I thought I'd give him some time. He is just a late bloomer.
We moved to Utah to be near family and also to improve Jason's work hours. It was a smart move hindsight to what was in our near future. At 22 months I went to a pediatrician here and told him my concerns. He said Jaden was just choosing to ignore and was being a two-year-old. I was relieved. It gave me hope that he was okay. But I still had a feeling something was wrong and that is what kept me asking questions. So I got his hearing checked and learned he could hear just fine. With those results I went to the school district to get him speech therapy.
A couple months went by and I felt there was no improvement with his speech and his behavior was getting worse. The screaming had intensified and his tantrums turned in to destructive stampedes around the house. Chairs, toys, dishes, food, and any object he could get a hold of were thrown or tipped over. Even his little sister, Brinn, was the object to express his anger and frustration on. I was deeply concerned, frustrated, and desperate for any help for this behavior.
I was talking to my sister Kristie. Her oldest boy has autism too along with other health complications because of a stressful delivery. She told me Jaden sounds like another autistic boy she knew and that I should get him tested.
I still didn't want to believe something could be wrong. I wanted to hold onto that hope that this was something he would grow out of, but I had a feeling that there was something wrong no matter what I wanted to believe.
So I did my own research on the internet about autism and found a list of symptoms that fit Jaden's description. They are as follows:
-He doesn't have imaginative play. He only organizes and stacks his toys.
-He is very attached to a toy. His stuffed lion to be exact.
-It is hard to get eye contact with him. At times he refuses to look at you while other times he gives it freely.
-He doesn't like strangers and has a melt down when he is surrounded by people he doesn't know. Church is a joke to go to. Our weekly seats are in the foyer.
-He is very huggy and loves to be touched. I didn't think this was a symptom but it is along with not wanting to be touched. I guess moderation is the key for a normal diagnosis.
-He doesn't respond to simple commands. It seems like he is ignoring me.
-At times he squeezes hard when he gives hugs or touches things with intensity. This is because of his sensory issues with touch. His sense of touch may not be as strong as normal kids or it may be stronger.
-Also tantrums, frustration, anger, and screaming are some symptoms.
There are many symptoms for autism. It is said that if you meet one autistic person you have only met one autistic person. That is why autism is a spectrum disorder. There is a wide spectrum they can fall on and no one person is the same.
So after doing this checklist I knew this was the monster I was facing. Both Jason and I cried for the loss of our son's normal future. For the kids who will refuse to play with him. For the family we hoped he would have in the future. And for all the opportunities that we dreamed and hoped for him. But at the same time I was relieved to know what the problem was and that I knew where to start to try and help Jaden.
Subscribe to:
Posts (Atom)