Okay so I have gotten tired lately of all the sad stories written about our autistic children. and really want to share hope with other moms and dads out there with autistic children.
so here's my letter I wrote to Dr. Phil.
Dear Dr. Phil
My name is Joy Neds I am a loving mother too 2 boys Dax 7 and Dallon 6 and I am married to a wonderful husband Derrick. I write today because I am a mother of a 7 year old Autistic child who we luckily got the help for at an earlier than average age. His diagnosis's are ASD, oral evasive, Developmental Speech Apraxia, Hypotonia, and FTT ( seems to be doing better on this one :) ). Our road is still long but instead of fearing it I try too look at as an adventure like no other,I would love to share my message of hope and a light at the end of that dark tunnel mom's who have children with autism face. My sons proof that yes although the path is steep and sometimes with out seeming hope. If we as parents are proactive and do all we can that our children can and do succeed.
As a mom of autistic child I do not have all the answers but maybe some ideas that can help other mothers out there who like me can not afford the 26,000 a year schools or insane therapies that seem to show little results. These are just little things that I feel can help other moms like myself walk this maze called Autism.
Some suggestions for other parents are
1. Children on the spectrum that I have interacted with have done better with parents that are "" lovingly strict"". This means setting clear and strong expectations and guide line for these kids. I find quite a few moms of these kids want to baby them and protect them for the realities of this world. I understand this desire and fight myself with it all the time,yet we have to remember when were gone they need to know how to handle everyday life and responsibilities. We are not just there parents we are there life line into the real world. They need strong structure from us who spend the very most time with.Love your autisic kids enough to believe they to can learn the rules of life.
2. Never allow anyone to tell you as a mom you do not know what's going on with your child.
You are your child's Advocate. If your instinct says over and over too you that something is wrong it likely is.
A.When my son was 6 months old I went to my sons doctor because he had stopped eating almost completely. I felt in my heart that this was not good. The doctor looked at my husband saw he was a small guy and said oh don't worry he is small for size but so is your husband no worries. Hell eat when he is hungry. I then asked but why would a 6 month old stop eating and stop growing. His response is its normal he will be just fine.
I went home feeling stupid and that I was silly to worry so much.
I went back again a few months later and got the same results.
I then decided to go to any other doctor I could find. I was lucky I found Dr. Kuo. To this day although we moved a few years later and no longer use her services that she saved my sons life and mine.
When I went in to her I let her know that he was 13 months and that from 6 month to now he had not grown in any way and that he would only eat a bite of food a day, he had also by then started to speak and then quit.She was immediately proactive. She got us to a wonderful speech and food therapist Dr. Gaylord Pinder at the children's therapy center of Kent Washington. We did 2-3 days a week therapy for both issues, we discovered a wonderful drink that helped him maintain his weight while we worked on his food issues. Dr. Kuo and Gaylord pinder also helped us when my sons early intervention preschool teacher refused to test him for autism citing his age as a major factor against testing ( he was 3 not too young in my view).
They found us wonderful Specialist in the field who evaluated him and helped us decide to move to Utah for better resources for our son.
What I learned from this is that not every doctor is right and that we as parents have the right and responsibility to find out what is really going on.
3. Is we as parents forget to ask for help and give ourselves or others a break.
Now not only do I mean finding things that help you to be happy but also that although ideally a perfectly clean house and such is great so is a house that is clean enough. Find time just to be the fun person even if it is only by rolling around on the floor with your kids.
The other part of this is not always passing judgment on others on how they do things. Every parent has a bad day and all kids are strewn with issues. Do not assume that because my son vocalizes in a store or an elevator or does crazy stunts with condiments. That I am a bad / inattentive parent.Parents of autistic deal with behaviors that would drive a saint insane. My son needs a 5 minute window to do major damage to my house. He is smart and sneaky, combine that with the crazy autistic behaviors and the disasters are too numerous to count!! I am considered over protective and a strict mom by most accounts, I do not believe in corporeal punishment but I believe my job is clearly to teach them right from wrong. Even my son who has done a ton of therapy over the years does crazy things.
The final word of advice is...
Learn to laugh at those major messes and things your children will do.
My sons messes have left me and my husband in stitch's more times than not.
One in particular is a living legend in our house. about 5 months ago my son decided to start hoarding items. I unfortunately am not a supper observant person and did not notice my food storage jars of Curry and taco seasoning and chili powder were gone. nor did i notice that the fire extinguishers we had had disappeared. I have since noticed he like to hide things over months at a time for future use. He used these items he had hoarded at the time to decorate the basement where his room is with both fire extinguishers and all the BULK spices. when i discovered this he was covered like a curry and white covered ghost.Now i had two reactions one was desperation over the disaster i was going to have to clean up.The other was pure laughter. Now i know not to laugh at this kind of behavior around my child but I had to find a quick place to die laughing over this picture i had of my son covered in that stuff.
Now i am not saying don't get mad they need the limits set and to know that they are responsible for there behaviors but take time to also enjoy the funny thing these kids do,
Thanks
Joy Neds
My name is Joy Neds I am a loving mother too 2 boys Dax 7 and Dallon 6 and I am married to a wonderful husband Derrick. I write today because I am a mother of a 7 year old Autistic child who we luckily got the help for at an earlier than average age. His diagnosis's are ASD, oral evasive, Developmental Speech Apraxia, Hypotonia, and FTT ( seems to be doing better on this one :) ). Our road is still long but instead of fearing it I try too look at as an adventure like no other,I would love to share my message of hope and a light at the end of that dark tunnel mom's who have children with autism face. My sons proof that yes although the path is steep and sometimes with out seeming hope. If we as parents are proactive and do all we can that our children can and do succeed.
As a mom of autistic child I do not have all the answers but maybe some ideas that can help other mothers out there who like me can not afford the 26,000 a year schools or insane therapies that seem to show little results. These are just little things that I feel can help other moms like myself walk this maze called Autism.
Some suggestions for other parents are
1. Children on the spectrum that I have interacted with have done better with parents that are "" lovingly strict"". This means setting clear and strong expectations and guide line for these kids. I find quite a few moms of these kids want to baby them and protect them for the realities of this world. I understand this desire and fight myself with it all the time,yet we have to remember when were gone they need to know how to handle everyday life and responsibilities. We are not just there parents we are there life line into the real world. They need strong structure from us who spend the very most time with.Love your autisic kids enough to believe they to can learn the rules of life.
2. Never allow anyone to tell you as a mom you do not know what's going on with your child.
You are your child's Advocate. If your instinct says over and over too you that something is wrong it likely is.
A.When my son was 6 months old I went to my sons doctor because he had stopped eating almost completely. I felt in my heart that this was not good. The doctor looked at my husband saw he was a small guy and said oh don't worry he is small for size but so is your husband no worries. Hell eat when he is hungry. I then asked but why would a 6 month old stop eating and stop growing. His response is its normal he will be just fine.
I went home feeling stupid and that I was silly to worry so much.
I went back again a few months later and got the same results.
I then decided to go to any other doctor I could find. I was lucky I found Dr. Kuo. To this day although we moved a few years later and no longer use her services that she saved my sons life and mine.
When I went in to her I let her know that he was 13 months and that from 6 month to now he had not grown in any way and that he would only eat a bite of food a day, he had also by then started to speak and then quit.She was immediately proactive. She got us to a wonderful speech and food therapist Dr. Gaylord Pinder at the children's therapy center of Kent Washington. We did 2-3 days a week therapy for both issues, we discovered a wonderful drink that helped him maintain his weight while we worked on his food issues. Dr. Kuo and Gaylord pinder also helped us when my sons early intervention preschool teacher refused to test him for autism citing his age as a major factor against testing ( he was 3 not too young in my view).
They found us wonderful Specialist in the field who evaluated him and helped us decide to move to Utah for better resources for our son.
What I learned from this is that not every doctor is right and that we as parents have the right and responsibility to find out what is really going on.
3. Is we as parents forget to ask for help and give ourselves or others a break.
Now not only do I mean finding things that help you to be happy but also that although ideally a perfectly clean house and such is great so is a house that is clean enough. Find time just to be the fun person even if it is only by rolling around on the floor with your kids.
The other part of this is not always passing judgment on others on how they do things. Every parent has a bad day and all kids are strewn with issues. Do not assume that because my son vocalizes in a store or an elevator or does crazy stunts with condiments. That I am a bad / inattentive parent.Parents of autistic deal with behaviors that would drive a saint insane. My son needs a 5 minute window to do major damage to my house. He is smart and sneaky, combine that with the crazy autistic behaviors and the disasters are too numerous to count!! I am considered over protective and a strict mom by most accounts, I do not believe in corporeal punishment but I believe my job is clearly to teach them right from wrong. Even my son who has done a ton of therapy over the years does crazy things.
The final word of advice is...
Learn to laugh at those major messes and things your children will do.
My sons messes have left me and my husband in stitch's more times than not.
One in particular is a living legend in our house. about 5 months ago my son decided to start hoarding items. I unfortunately am not a supper observant person and did not notice my food storage jars of Curry and taco seasoning and chili powder were gone. nor did i notice that the fire extinguishers we had had disappeared. I have since noticed he like to hide things over months at a time for future use. He used these items he had hoarded at the time to decorate the basement where his room is with both fire extinguishers and all the BULK spices. when i discovered this he was covered like a curry and white covered ghost.Now i had two reactions one was desperation over the disaster i was going to have to clean up.The other was pure laughter. Now i know not to laugh at this kind of behavior around my child but I had to find a quick place to die laughing over this picture i had of my son covered in that stuff.
Now i am not saying don't get mad they need the limits set and to know that they are responsible for there behaviors but take time to also enjoy the funny thing these kids do,
Thanks
Joy Neds
3 comments:
can I just say AMEN! I love what you said. My son is autistic and I have to agree on everything you said. Even the laughing at what they do. Thank you.
Thanks I really felt inspired to write it. Our lives are differnt than others and we forget to allow ourselves the grace and laughter needed to get through this.
AMEN! People who have never walked in our shoes have no idea what it is like. Sometimes laughing is easier than getting upset.
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