Practical Information and Resources about the Autism Spectrum
This lens is being developed for anyone who's life is touched by Autism. Even though both of my boys have only been diagnosed within this past year, I had suspected there were problems with my older son for at least 2 years before formal diagnosis. I found that I did not get alot of help from the general medical world as my son's symptoms started out subtle and it was hard to find the correct help. We literally spent years jumping from dr. to dr. with little or no success in finding practical solutions for Liam. This was partially the health insurance company's fault as well because we were stuck having to use their in-network providers. It was a nightmare trying to find an in-network provider taking on new patients. It finally took a crisis inpatient hospitalization to get the proper supports that Liam needed.
It is my hope that maybe I can help other families struggling like we did not to have to reinvent the wheel again. The advice and views given here are strictly my own and I do not claim to be a professional of any kind whatsoever. I'm just a mom who has been down a rough road with my boys and this is my no nonsense take of what I have learned so far. Any comments from others are greatly appreciated and encouraged.
Adventures in Autism: My Life with 2 little boys on the Spectrum
Loving, Living, Learning, and facing the challenges one day at a time...
It's quite funny to think back 8 years ago and how incredibly different my life was. My husband and I had been on the infertility roller coaster for about 8 years due to the fact that I had stage IV Endometriosis. We were ready to give up on the idea of having kids of our own, when I miraclously wound up pregnant in March of 1999.
AT LAST! We finally had our happily every after or so I thought at that time. In many ways we did find it, but it certainly was not the happily ever after I had fantasized about.
We were gradually emersed into the world of Autism with our 1st son. When Liam was born we rejoiced in our perfectly wonderful new son. Other than some rough collicky nights, Liam met all his development milestones on schedule and even went beyond many of them. There was nothing specific that sent up red flags for us. He had an extrodinarily rich vocabulary for a little child and was extremely bright. It wasn't until he started having social and emotional issues around age 3 1/2 that we even suspected there were problems.
We did have a family history of Autism. My husband's sister's child was diagnosed with Pervasive Developmental Disorder. This is the spectrum catchall diagnosis for high functioning kids. When I did start to see similarities in Liam's behavior I was not exactly sure if he really could be on the spectrum because they were so subtle. They were not easy to pick up on or consistent, and I struggled for over 2 years trying to get his pediatrician to take me seriously about my concerns. It wasn't until the end of Kindergarten that we got a formal diagnosis.
Liam had Aspergers Syndrome. About a month later Liam's symptoms had escalated to the point that he wound up on the Autism unit of Shephard Pratt Hospital where we finally got a good Psychiatrist and the meds he needed in place.
Our youngest son Jack was quite a different story, which illustrates quite well why they call it the Autism Spectrum. Jack started out making his developmental milestones quite well but around 12 months we started noticing a decline. He we non-verbal and seemed to zone out quite easily. We immediately got him into the local infants and toddlers program. It was not until just after the age of 2 that we got the formal diagnosis for Jack mild to moderate Autism.
So with that brief history in place, I hope to continue my journey with these two beautiful boys and try to bring education, resources, strength, and hope, to other families touched by Autism.
AT LAST! We finally had our happily every after or so I thought at that time. In many ways we did find it, but it certainly was not the happily ever after I had fantasized about.
We were gradually emersed into the world of Autism with our 1st son. When Liam was born we rejoiced in our perfectly wonderful new son. Other than some rough collicky nights, Liam met all his development milestones on schedule and even went beyond many of them. There was nothing specific that sent up red flags for us. He had an extrodinarily rich vocabulary for a little child and was extremely bright. It wasn't until he started having social and emotional issues around age 3 1/2 that we even suspected there were problems.
We did have a family history of Autism. My husband's sister's child was diagnosed with Pervasive Developmental Disorder. This is the spectrum catchall diagnosis for high functioning kids. When I did start to see similarities in Liam's behavior I was not exactly sure if he really could be on the spectrum because they were so subtle. They were not easy to pick up on or consistent, and I struggled for over 2 years trying to get his pediatrician to take me seriously about my concerns. It wasn't until the end of Kindergarten that we got a formal diagnosis.
Liam had Aspergers Syndrome. About a month later Liam's symptoms had escalated to the point that he wound up on the Autism unit of Shephard Pratt Hospital where we finally got a good Psychiatrist and the meds he needed in place.
Our youngest son Jack was quite a different story, which illustrates quite well why they call it the Autism Spectrum. Jack started out making his developmental milestones quite well but around 12 months we started noticing a decline. He we non-verbal and seemed to zone out quite easily. We immediately got him into the local infants and toddlers program. It was not until just after the age of 2 that we got the formal diagnosis for Jack mild to moderate Autism.
So with that brief history in place, I hope to continue my journey with these two beautiful boys and try to bring education, resources, strength, and hope, to other families touched by Autism.
What a difference a year makes...
How getting the right supports in place make all the difference...
In July 2006 we had to have our oldest son admitted on an urgent intake to Shephard Pratt Hospital's Pediatric Autism Unit. As hard as it was having to leave your 6 year old child in a psychiatric hospital, I have no regrets whatsoever about our decision. Our lives had become so unmanagable and I had lost all leverage over Liam trying to parent him because he was so oppositional, and frankly quite violent. He would go into terrible rages and there was no way to diffuse it. Unfortunately Liam also has Oppositional Defiant Disorder (ODD) that is co-morbid with his Aspergers Syndrome. From my research, I found that is not uncommon to have another co-morbid condition with autism.
Shephard Pratt was really a God-send to our family because they immediately stopped the downward spiral of negative behavior. Then they were able to get Liam stabilized with the appropriate medication, and we FINALLY had a great psychiatrist in place who could prescribe meds. We had a terrible time trying to find a participating child psychiatrist who was taking new patients on our plan.
We also we able to get Liam into Kennedy Kreiger's behavioral therapy program, which also was a God-send for us. We continue to get hands on behavioral therapy that addresses our personal family needs for both boys. I learned how to contain Liam with a technique called a "basket hold" when he becomes too violent, ad it works quite well! We have also learned different parenting skills that work well with Liam's personality.
Our biggest challenge right now is a very dangerous elopement issue with our 2 year old Jack.(who we like to call our "Little Houdini") Jack has an amazing skill to be able to go missing in a matter of seconds. He even got out of our house one morning while we were all sleeping. Liam had accidently left the sliding glass door unlocked in the basement the night before. Jack was the first to wake up and he wandered 2 flights down to the basement and right out the unlocked door in his diaper and bare feet. It truly was by the grace of God that our next door neighbor just happened to find Jack running back and forth across a busy street a half block from our house. We are now working on home visits for stratedgies to contain and condition Jack from eloping.
Long story short: To fellow struggling families, PLEASE never give up looking for answers because they are out there even though it may take time to find them.
Shephard Pratt was really a God-send to our family because they immediately stopped the downward spiral of negative behavior. Then they were able to get Liam stabilized with the appropriate medication, and we FINALLY had a great psychiatrist in place who could prescribe meds. We had a terrible time trying to find a participating child psychiatrist who was taking new patients on our plan.
We also we able to get Liam into Kennedy Kreiger's behavioral therapy program, which also was a God-send for us. We continue to get hands on behavioral therapy that addresses our personal family needs for both boys. I learned how to contain Liam with a technique called a "basket hold" when he becomes too violent, ad it works quite well! We have also learned different parenting skills that work well with Liam's personality.
Our biggest challenge right now is a very dangerous elopement issue with our 2 year old Jack.(who we like to call our "Little Houdini") Jack has an amazing skill to be able to go missing in a matter of seconds. He even got out of our house one morning while we were all sleeping. Liam had accidently left the sliding glass door unlocked in the basement the night before. Jack was the first to wake up and he wandered 2 flights down to the basement and right out the unlocked door in his diaper and bare feet. It truly was by the grace of God that our next door neighbor just happened to find Jack running back and forth across a busy street a half block from our house. We are now working on home visits for stratedgies to contain and condition Jack from eloping.
Long story short: To fellow struggling families, PLEASE never give up looking for answers because they are out there even though it may take time to find them.
Pivotal Response Training (PRT)
A great new technique for high functioning children on the spectrum
One of the most frustrating problems with a non-verbal or speech delayed child is trying to figure out their wants and needs. It is frustrating for both the child and the parent. You have to become a mindreader learning subtle reactions and reponses that alert you to what you child wants. Alot of times it's just hit or miss till you get it right.
For successful communication to begin, it is imperative the child make the crucial connection that words are a valuable tool to getting their needs met. A recent Kennedy Kreiger Study revealed that Pivotal Response Training is a wonderful new technique that does just this.
Our 2 year old Jack is very receptive to this particular technique and responds extremely well. The basic idea behind PRT is actually quite simple, yet applying it correctly can be easier said than done.
BASIC PRT TECHNIQUE:
You must first have a reward that the child will really want to work for. For example: Jack will work quite well for cookies.
The most important thing to remember is that the child needs to be interested the the task at hand and willing to work for the reward.
In the cookie example, you would show the cookie to the child and get good eye contact from him. When you have established the eye contact, look right at him and say "cookie" if there are no verbal skills yet you can actually give him the cookie for good eye contact to begin with.
Once the eye contact is achieved easily, you now need to up the anti, before you reward him with the cookie, he must now make eye contact and give you some sort of sound that means: "I want the cookie". For example the child may just make the beginning sounds of the word cookie or even any sound at all to get the cookie. The important thing to remember here is that the reward is given immediately after the desired respose so that the child makes the connection that "if I make this sound, I will get a cookie"
Basically you just keep upping the anti for the child as he masters each desired response until you have the child saying the entire word "cookie".
The ultimate (PRT) goal is for the child to make the connection that words help me to get what I want. This global realization is truly "pivotal" for the future success and development of the non-verbal or speech delayed child. As a parent who has seen how well (PRT) works, I would definately encourage parents to seek out a good behavioral therapist skilled in (PRT)training.
For successful communication to begin, it is imperative the child make the crucial connection that words are a valuable tool to getting their needs met. A recent Kennedy Kreiger Study revealed that Pivotal Response Training is a wonderful new technique that does just this.
Our 2 year old Jack is very receptive to this particular technique and responds extremely well. The basic idea behind PRT is actually quite simple, yet applying it correctly can be easier said than done.
BASIC PRT TECHNIQUE:
You must first have a reward that the child will really want to work for. For example: Jack will work quite well for cookies.
The most important thing to remember is that the child needs to be interested the the task at hand and willing to work for the reward.
In the cookie example, you would show the cookie to the child and get good eye contact from him. When you have established the eye contact, look right at him and say "cookie" if there are no verbal skills yet you can actually give him the cookie for good eye contact to begin with.
Once the eye contact is achieved easily, you now need to up the anti, before you reward him with the cookie, he must now make eye contact and give you some sort of sound that means: "I want the cookie". For example the child may just make the beginning sounds of the word cookie or even any sound at all to get the cookie. The important thing to remember here is that the reward is given immediately after the desired respose so that the child makes the connection that "if I make this sound, I will get a cookie"
Basically you just keep upping the anti for the child as he masters each desired response until you have the child saying the entire word "cookie".
The ultimate (PRT) goal is for the child to make the connection that words help me to get what I want. This global realization is truly "pivotal" for the future success and development of the non-verbal or speech delayed child. As a parent who has seen how well (PRT) works, I would definately encourage parents to seek out a good behavioral therapist skilled in (PRT)training.
McKendrick's Gifts: T-Shirts & More
Check out Matt McKendrick's Great Autism Awareness Designs for T-Shirts & More
Make sure to visit this great CafePress store loaded with lots of great Autism Awareness designs by Matt McKendrick! Let everyone know how important Autism Awareness is!
Autism:Handprint Sweatshirt
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Reader Feedback
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- BabyHarley BabyHarley May 5, 2009 @ 10:38 pm
- Great lens giving much needed information. Well done.
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- jpoet jpoet Apr 7, 2009 @ 11:04 pm
- Very nice lens. Thank You for sharing your story.
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- CDT CDT Dec 27, 2008 @ 6:07 pm
- As a parent of an 18 year old with Aspergers Syndrome, I KNOW what you're going through...5* for a very useful lens :)
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- dc64 dc64 Dec 26, 2008 @ 11:15 pm
- I can't begin to imagine the struggles you have gone through with Autism. I applaud your strength and perseverance, and wish you only the best. It seems that we all have our own kind of struggles, but it is how we handle them that defines us as people. God bless you.
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- Margo_Arrowsmith Margo_Arrowsmith Dec 20, 2008 @ 10:43 pm
- I currently have an asberger's client. She was a challenge although as we work and I get to know her and she me, it is going better. My prayers and best wishes to you! ***** to you also.
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by adventuresinautism
Hi my name is Chris and I am a mom to two wonderful little boys on the Autism Spectrum. I also a stay at home mom and married to a great gu...
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