New, need so much advice

[Wingnut]

Hi. I joined this board because my husband and I are concerned that our 19 month old son is Autistic. Our research first began because Matthieu, our son, is not developing his speech appropriately. We work with him constantly, speak, read, do flash cards...yet one day he will pop up with a word like "listen," say it over and over for a week, then never say it again. He also has seemed delayed in social areas...doesn't wave bye-bye or point to things he wants, etc. As I searched the internet I continued to come across Autism, looking at warning signs and "red flags." My son seems to exhibit at about 3/4 of every warning sign or red flag listed on various websites. I had been hiding my suspicions and concerns from my husband because he travels a lot and we are expecting our second child any day now. He has been very worried that he is going to miss the birth. But today he caught me on an Autism website and I had to explain. We were both in tears as he agreed with me over and over. He actually had similar concerns but didn't want to tell me because I am so close to having the baby and he thought it would stress me out. Every day I feel like I am losing ground with my little boy. Every day that goes by I feel guilty that I am not doing something to help him. Every day I see children his age and younger...he is just different and I want to help him so very much.

This is one of the short checklists. He exhibits all five below:

According to the National Institute of Child Health and Human Development's Autism Facts, "a doctor should definitely and immediately evaluate a child for autism if he or she:

· Does not babble or coo by 12 months of age
· Does not gesture (point, wave, grasp, etc.) by 12 months of age
· Does not say single words by 16 months of age
· Does not say two-word phrases on his or her own (rather than just repeating what someone says to him or her) by 24 months of age
· Has any loss of any language or social skill at any age.


We would like to take Matthieu directly to some kind of specialist to have him evaluated rather than to a pediatrician who is probably going to blow me off as over-reacting. We are in the Phoenix, AZ area and have no insurance at this time. Where should we go to have the best evaluation done? How much is this going to cost? Is there someone on this board that would be willing to take a look at the more detailed list of signs my son has and help me determine if any of this is necessary? Our gut feeling says it is, though.

TIA,

Lisa

[Sassanach]

I understand your concerns, I'm new at this too..My son dropped off my grandson to me when he was 17 mos old...I didn't know him and was very frustrated by his behaviour and lack of child social skills and being able to focus on learning and communicating..I blamed the mother mostly for her excessive drug use during pregnancy and thought he was a drug baby and would never come out of it, but learned very fast that the baby was very smart and loveable and needed something. What though?I did research on fish oil for myself and thought that might be a good thing for my grandson and then read about flax seed oil and did start him on that 1/4 tsp to start and slowly introduce more to where he is taking 1tsp daily...What a different kid, his words a formulating better and putting words into sentences and actually looking into my eyes and responding to questions...I don't really understand the connection, but he is happy and I am happy...
I would love to hear from anyone else with similar problems with their babies and what they have done to help them and just because it seems that we have a common bond in that we understand something is wrong and we need to find an answer.
Thanks, Teri[QUOTE=Wingnut]Hi. I joined this board because my husband and I are concerned that our 19 month old son is Autistic. Our research first began because Matthieu, our son, is not developing his speech appropriately. We work with him constantly, speak, read, do flash cards...yet one day he will pop up with a word like "listen," say it over and over for a week, then never say it again. He also has seemed delayed in social areas...doesn't wave bye-bye or point to things he wants, etc. As I searched the internet I continued to come across Autism, looking at warning signs and "red flags." My son seems to exhibit at about 3/4 of every warning sign or red flag listed on various websites. I had been hiding my suspicions and concerns from my husband because he travels a lot and we are expecting our second child any day now. He has been very worried that he is going to miss the birth. But today he caught me on an Autism website and I had to explain. We were both in tears as he agreed with me over and over. He actually had similar concerns but didn't want to tell me because I am so close to having the baby and he thought it would stress me out. Every day I feel like I am losing ground with my little boy. Every day that goes by I feel guilty that I am not doing something to help him. Every day I see children his age and younger...he is just different and I want to help him so very much.

This is one of the short checklists. He exhibits all five below:

According to the National Institute of Child Health and Human Development's Autism Facts, "a doctor should definitely and immediately evaluate a child for autism if he or she:

· Does not babble or coo by 12 months of age
· Does not gesture (point, wave, grasp, etc.) by 12 months of age
· Does not say single words by 16 months of age
· Does not say two-word phrases on his or her own (rather than just repeating what someone says to him or her) by 24 months of age
· Has any loss of any language or social skill at any age.


We would like to take Matthieu directly to some kind of specialist to have him evaluated rather than to a pediatrician who is probably going to blow me off as over-reacting. We are in the Phoenix, AZ area and have no insurance at this time. Where should we go to have the best evaluation done? How much is this going to cost? Is there someone on this board that would be willing to take a look at the more detailed list of signs my son has and help me determine if any of this is necessary? Our gut feeling says it is, though.

TIA,

Lisa[/QUOTE]

[AutMom]

Welcome to the group!

No insurance...that's too bad. Hopefully someone can help answer your questions.

[JoiLynn]

Hi!

I joined this board today in hopes that someone could help me, & it seems that I'm already feeling better trying to help out others. After reading your post, I can not stress enough how important early diagnosis is to your son's future development!! Insurance or not.

I have twin 2 year old sons, Reece & Jacob. Reece was diagnosed with autism 4 months ago. Having the diagnosis is both a blessing and a curse. A blessing because you can get special services for your son FOR FREE. A curse because there is so much pain & heartache involved in knowing one of my twins has autism.

First step, I would make a call to your local school and ask them what agency in your area does early intervention services. These are specialty services provided to children up to age three. (After age three, the school department is responsible for providing services.)

Second, call the early intervention agency and tell them your fears and situation. These agencies are often provided funds by the state & federal governments to help assist families like yours. Ask them for a good pediatric psychologist who has experience in diagnosing children with autism. You pediatrician may try to tell you that they can't make a diagnosis until age 4-5, BUT DON'T LISTEN TO HIM IF HE TELLS YOU THIS! Insist on an early appt with the psychologist - get on the cancellation list if they have one. Every day you miss services for your son is a day he can never get back. Work out a monthly payment plan with the psychologist if necessary: your son's future depends on getting the proper diagnosis. Without a concrete diagnosis, your son is not eligible for so many free services. I'd rather pay a couple hundred dollars up front (over several months) rather than the thousands and thousands of dollars it would cost me to get Reece help without the diagnosis!

Next, I STRONGLY encourage you to read the book, Facing Autism by Lynn Hamilton. It helped me so much! She is a parent of a young boy with autism. She tells her experience in such a way that I could easily relate to! It is written to parents, not to doctors or professionals. It's easy to understand & has so much great advice, agencies in your state, how to get funding, how to try certain diets, types of therapies to try, etc. When my son was diagnosed 4 months ago in November, this book became my "bible" of autism. I have since contacted the Autism Research Institute (ARI) as she suggested in her book, and they have helped me to navigate this mess of the world of autism.

Reece has grown so much in the past 4 months since his diagnosis! I am incorporating the DAN! protocol (Defeat Autism Now!) through the Autism Research Insittute. Just do a search for them - you'll learn so much your head will spin!

I hope this message helps you in your quest to help your son. I wish you answers & I wish you well.

Warmly,
Joi Lynn

[Wingnut]

JoiLynn,

Thank you, thank you so much. We were actually able to get into the Center for Autism Research and Education the first day we called. We went today and they "consulted" us as well as spent some time with our son. They said our concerns were valid and referred us to the Early Intervention people in our area as well as their psychologist. They did a nutritional and medical eval while we were there and felt that some changes in his diet would be a place to start due to evidence of allergies. My husband and I are feeling very emotional today. He is very grumpy, angry. We have done everything right (to our educated knowledge) and then we have so many family members who have just neglected their children, abused them, used drugs in their presence, etc. and their kids are without these struggles. I am very relieved yet very sad for our little guy. We both know, too, that we have a long, long, long road ahead of us...we all do...the three of us...and I am due with our little girl in just two weeks which is going to add some pressure and emotion. Thank you so much for your direction and encouragement. I hope to keep in touch with you.


I joined this board today in hopes that someone could help me, & it seems that I'm already feeling better trying to help out others. After reading your post, I can not stress enough how important early diagnosis is to your son's future development!! Insurance or not.

I have twin 2 year old sons, Reece & Jacob. Reece was diagnosed with autism 4 months ago. Having the diagnosis is both a blessing and a curse. A blessing because you can get special services for your son FOR FREE. A curse because there is so much pain & heartache involved in knowing one of my twins has autism.

First step, I would make a call to your local school and ask them what agency in your area does early intervention services. These are specialty services provided to children up to age three. (After age three, the school department is responsible for providing services.)

Second, call the early intervention agency and tell them your fears and situation. These agencies are often provided funds by the state & federal governments to help assist families like yours. Ask them for a good pediatric psychologist who has experience in diagnosing children with autism. You pediatrician may try to tell you that they can't make a diagnosis until age 4-5, BUT DON'T LISTEN TO HIM IF HE TELLS YOU THIS! Insist on an early appt with the psychologist - get on the cancellation list if they have one. Every day you miss services for your son is a day he can never get back. Work out a monthly payment plan with the psychologist if necessary: your son's future depends on getting the proper diagnosis. Without a concrete diagnosis, your son is not eligible for so many free services. I'd rather pay a couple hundred dollars up front (over several months) rather than the thousands and thousands of dollars it would cost me to get Reece help without the diagnosis!

Next, I STRONGLY encourage you to read the book, Facing Autism by Lynn Hamilton. It helped me so much! She is a parent of a young boy with autism. She tells her experience in such a way that I could easily relate to! It is written to parents, not to doctors or professionals. It's easy to understand & has so much great advice, agencies in your state, how to get funding, how to try certain diets, types of therapies to try, etc. When my son was diagnosed 4 months ago in November, this book became my "bible" of autism. I have since contacted the Autism Research Institute (ARI) as she suggested in her book, and they have helped me to navigate this mess of the world of autism.

Reece has grown so much in the past 4 months since his diagnosis! I am incorporating the DAN! protocol (Defeat Autism Now!) through the Autism Research Insittute. Just do a search for them - you'll learn so much your head will spin!

I hope this message helps you in your quest to help your son. I wish you answers & I wish you well.

Warmly,
Joi Lynn[/QUOTE]

[Bethintx]

Look at my post introducing myself. I hope it's encouraging!

Bethintx