To bring everybody up-to-date:
John was diagnosed as "at risk" for autism at 30 months old by Regional Center
When he turned 3, he was evaluated by the school district, who said they do not see a developmental delay or signs of autism that impact education and denied any special educational services.
Regional Center then told us that since he had "provisional" or "at risk" autism to begin with, there never was a diagnosis in the first place.
SO --- we are going through a medical doctor, a neuro-psych to find out if John needs a diagnosis or not. Both Regional Center and the school district determine funding, so we thought we needed another opinion by someone who had nothing to do with funding.
The assessment will consist of parent and teacher questionnaires and interviews, as well as a few days of evaluation of John in different settings and at school, with other kids. We've had 2 sessions already and am looking forward to her assessment.
Showing posts with label Regional Center. Show all posts
Showing posts with label Regional Center. Show all posts
Monday, March 2, 2009
Friday, August 15, 2008
Regional Center
I thought I'd talk about California's Regional Center and how it relates to our experiences with John and his therapy.
According to the California Department of Developmental Services website, Regional Centers provide diagnosis and assessment of eligibility, as well as help to plan, access, coordinate and monitor the services and supports that are needed due to a developmental disability.
Infants and toddlers (age 0 to 36 months) who are at risk of having developmental disabilities or who have a developmental delay may also qualify for services. The criteria for determining the eligibility of infants and toddlers is specified in Section 95014 of the California Government code. These services are provided through their "EARLY START" program. In addition, individuals at risk of having a child with a developmental disability may be eligible for genetic diagnosis, counseling and other prevention services.
I am going to concentrate on the infants and toddlers portion of the Regional Centers.
(from their website, sited above):
According to the California Department of Developmental Services website, Regional Centers provide diagnosis and assessment of eligibility, as well as help to plan, access, coordinate and monitor the services and supports that are needed due to a developmental disability.
Infants and toddlers (age 0 to 36 months) who are at risk of having developmental disabilities or who have a developmental delay may also qualify for services. The criteria for determining the eligibility of infants and toddlers is specified in Section 95014 of the California Government code. These services are provided through their "EARLY START" program. In addition, individuals at risk of having a child with a developmental disability may be eligible for genetic diagnosis, counseling and other prevention services.
I am going to concentrate on the infants and toddlers portion of the Regional Centers.
(from their website, sited above):
Who is eligible?
Infants and toddlers from birth to 36 months may be eligible for early intervention services if through documented evaluation and assessment they meet one of the criteria listed below:
- have a developmental delay in either cognitive, communication, social or emotional, adaptive, or physical and motor development including vision and hearing; or
- have established risk conditions of known etiology, with a high probability of resulting in delayed development; or
- are at high risk of having a substantial developmental disability due to a combination of risk factors.
What early intervention services are available?
Based on the child's assessed developmental needs and the families concerns and priorities as determined by each child's Individualized Family Service Plan (IFSP) team, early intervention services may include:
- assistive technology
- audiology
- family training, counseling, and home visits
- health services
- medical services for diagnostic/evaluation purposes only
- nursing services
- nutrition services
- occupational therapy
- physical therapy
- psychological services
- respite services
- service coordination (case management)
- social work services
- special instruction
- speech and language services
- transportation and related costs
- vision services
What happens after a referral?
Within 45-days the regional center shall:
- Assign a service coordinator to assist the family through evaluation and assessment procedures.
- Obtain parent consent for evaluation is obtained.
- Schedule and complete evaluations and assessments for the child's development.
- If infant or toddler is eligible for early intervention services, an Individual Family Service Plan (IFSP) will be developed that addresses the strengths, needs of the infant or toddler, parent concerns, and early intervention services.
- Identified early intervention services that are started in the family home or other community settings.
How much does it cost?
There is no cost. Early intervention services including evaluation, assessment and service coordination.
John's Transition out of Regional CenterJohn's services are paid through Regional Center until he turns 3. At that time, he must transition into the public school system. He will be re-evaluated by the school system to determine eligibility. He must qualify to receive services. This is why it is important to me to find out from someone other than those providing or withholding funding whether they think he continues to show "at risk" behavior, if he receives a permanent diagnosis, or if he'll be able to go into mainstream schooling. As his language develops further, we are (and will be) able to see more clearly where his problems lie. Being able to tell what he understands and what concepts are unclear will help determine what the future will be for John. At this time, it is too early to tell.
Friday, August 8, 2008
Do I see it or do I not?
In follow up to the last blog regarding the Autism spectrum, I'd like to take the time to address the most asked question I get. Do I see John as Autistic?
To be perfectly honest, there are some days when I think, "yeah maybe they're right" and then other days when I feel that "autism" isn't John's problem. There are things about this syndrome that make it difficult to really determine whether John falls within it or not. The fact that "every child is different" and shows a varying degree of symptoms is one of those things. The other is that when John is around other children with it, parents of other children with Autism, therapists, etc., they often state to me that they are surprised with the autistic diagnosis so young and if "he really has it, it's mild".
Before I go on, I want to make it clear that I KNOW something is "not right" with John's development. He is significantly delayed in many areas and has behaviors that are not 'normal'. That is why I am learning all I can about all of the things that affect John, his behavior and his development. He has very scattered skills, with very low attention span, and is easily distracted.
The more I am reading (and writing) about SPD (Sensory Processing Disorder), the more I believe that John has sensory issues. Now, most autistic kids suffer from SPD as well, but not all kids with SPD are autistic, but the pattern of behaviors (including limited eye contact) are associated with SPD.
Now, I'm not saying John is not autistic, by any means. I'm just starting to realize what "at risk" behaviors truly are and why an early intervention program can help kids whether "at risk", autistic, or just developmentally delayed. The "label" of autism right now gets the help needed in the early intervention programs. At 3 years old, he will be re-tested through the school system to determine whether they believe he can continue through the public school system.
****Now, all of this leads me to my point. I will not "know for certain" if John is autistic or not, until a medical doctor, that is NOT tied into giving me some sort of funding or early intervention help, gives me that diagnosis. We are awaiting confirmation that John will be seeing an autistic specialist in October to give us a full evaluation. That diagnosis will be the one that will be the determining factor whether I have to fight for services (and what kind of services to fight for) or not. I am not going to let the school system tell me he isn't autistic or he no longer needs services. As his language develops and he gains certain skills through early intervention, it will become clear whether or not he is autistic, but someone who is granting or denying me service will not be the ones to give me that diagnosis.
Determining if John is/was eligible for Regional Center's services had a lot of contributing factors, including which Regional Center we got to go to. Some Regional Center's have more funding than others, for example. The first round is to pass an over the phone interview with the caregiver to determine if an evaluation should be done. I was told that every Mondays a committee meets to go through the calls from the week and determines which children can come in for a full evaluation. Two therapists hold the 2 1/2 hour evaluation and determine on the spot whether he qualifies for service or not. It was at that evaluation when they told me John was "at risk" for Autism and gave me the "now that your child is autistic" packet. The written evaluation came about 1-2 weeks later, stating that it was an "autistic disorder". That diagnosis qualified John for 25 hours a week of service, although we are not using that much at this time.
To sum it up, I'd like to answer the question by saying that the label John has right now doesn't matter to me. There is a reason why he qualified for service and that is because there is a significant developmental delay. I want to do everything I possibly can to help John progress. I want a medical doctor's second opinion because I don't want funding issues to interfere with his diagnosis. I also don't want the wrong label placed on John. As I am learning about disorders like SPD, I am discovering about different means of therapy. While classes like speech and early start pre-school teach John to do specific tasks to fit into a societal mold, occupational therapy helps to determine what it is that causes John to be delayed in those areas. It seeks to find the underlying cause and fix it through structured therapy. Right now, I'm fighting for the Occupation Therapy Evaluation that will determine if John would benefit from OT/SI therapy. Being pro-active and being involved in your children's therapy and "individualized service plan" (Regional Center's term) is what determines the success for your child. Finding the right 'label' is important in determining how to help.
To be perfectly honest, there are some days when I think, "yeah maybe they're right" and then other days when I feel that "autism" isn't John's problem. There are things about this syndrome that make it difficult to really determine whether John falls within it or not. The fact that "every child is different" and shows a varying degree of symptoms is one of those things. The other is that when John is around other children with it, parents of other children with Autism, therapists, etc., they often state to me that they are surprised with the autistic diagnosis so young and if "he really has it, it's mild".
Before I go on, I want to make it clear that I KNOW something is "not right" with John's development. He is significantly delayed in many areas and has behaviors that are not 'normal'. That is why I am learning all I can about all of the things that affect John, his behavior and his development. He has very scattered skills, with very low attention span, and is easily distracted.
The more I am reading (and writing) about SPD (Sensory Processing Disorder), the more I believe that John has sensory issues. Now, most autistic kids suffer from SPD as well, but not all kids with SPD are autistic, but the pattern of behaviors (including limited eye contact) are associated with SPD.
Now, I'm not saying John is not autistic, by any means. I'm just starting to realize what "at risk" behaviors truly are and why an early intervention program can help kids whether "at risk", autistic, or just developmentally delayed. The "label" of autism right now gets the help needed in the early intervention programs. At 3 years old, he will be re-tested through the school system to determine whether they believe he can continue through the public school system.
****Now, all of this leads me to my point. I will not "know for certain" if John is autistic or not, until a medical doctor, that is NOT tied into giving me some sort of funding or early intervention help, gives me that diagnosis. We are awaiting confirmation that John will be seeing an autistic specialist in October to give us a full evaluation. That diagnosis will be the one that will be the determining factor whether I have to fight for services (and what kind of services to fight for) or not. I am not going to let the school system tell me he isn't autistic or he no longer needs services. As his language develops and he gains certain skills through early intervention, it will become clear whether or not he is autistic, but someone who is granting or denying me service will not be the ones to give me that diagnosis.
Determining if John is/was eligible for Regional Center's services had a lot of contributing factors, including which Regional Center we got to go to. Some Regional Center's have more funding than others, for example. The first round is to pass an over the phone interview with the caregiver to determine if an evaluation should be done. I was told that every Mondays a committee meets to go through the calls from the week and determines which children can come in for a full evaluation. Two therapists hold the 2 1/2 hour evaluation and determine on the spot whether he qualifies for service or not. It was at that evaluation when they told me John was "at risk" for Autism and gave me the "now that your child is autistic" packet. The written evaluation came about 1-2 weeks later, stating that it was an "autistic disorder". That diagnosis qualified John for 25 hours a week of service, although we are not using that much at this time.
To sum it up, I'd like to answer the question by saying that the label John has right now doesn't matter to me. There is a reason why he qualified for service and that is because there is a significant developmental delay. I want to do everything I possibly can to help John progress. I want a medical doctor's second opinion because I don't want funding issues to interfere with his diagnosis. I also don't want the wrong label placed on John. As I am learning about disorders like SPD, I am discovering about different means of therapy. While classes like speech and early start pre-school teach John to do specific tasks to fit into a societal mold, occupational therapy helps to determine what it is that causes John to be delayed in those areas. It seeks to find the underlying cause and fix it through structured therapy. Right now, I'm fighting for the Occupation Therapy Evaluation that will determine if John would benefit from OT/SI therapy. Being pro-active and being involved in your children's therapy and "individualized service plan" (Regional Center's term) is what determines the success for your child. Finding the right 'label' is important in determining how to help.
Monday, July 28, 2008
Autism
I thought I'd take the time in today's blog to concentrate on Autism, the diagnosis John has received.
Autism (defined here by regional center) is a developmental disorder defined as a syndrome causing significant and sustained impairment in social interaction and communication, with restricted and stereotypic patterns of interests, behavior, and activities which appear before age three. Since Autism is a syndrome, all people who have the disorder will not have all of the different behaviors associated with the disorder. Autism is a lifelong disability.
Children with autism are slow developing self-care, communication, social or learning skills. These skills are often uneven, having good skills in one area and poor skills in another. The person will have limitations in understanding words and ideas, and may be inappropriate responses in sight, hearing, touch, pain or balance. Relationships with people and objects may be abnormal.
Here are a list of behaviors that are Characteristic of Autistic Children: (though a child may not show all of these, showing a significant amount of them could lead to a diagnosis of an Autistic Disorder)
I took John in for a speech delay, but had also noticed these things:
Characteristics seen in his evaluation
Social Skills : Tested at a 10-17 month level (he was 30 months the day of the test)
Language Skills: tested at a 6-9 month level
Problem Solving: tested at a 21 month level
An "area of concern" is determined when a child tests at 1/3 his age in any category. He was 30 months old when he was tested. Any category where he tested at 20 months or lower was labeled an "area of concern".
The pattern of development shows "at risk" behaviors for an Autistic Disorder. At this time, he has not been "officially" diagnosed with Autism. The pattern meets the criteria for an Autistic Spectrum Disorder. Early Intervention was recommended, as well as a re-test when John is 4 or 5. We are also going to be seeing an Autistic Specialist in October for a second opinion.
Autism (defined here by regional center) is a developmental disorder defined as a syndrome causing significant and sustained impairment in social interaction and communication, with restricted and stereotypic patterns of interests, behavior, and activities which appear before age three. Since Autism is a syndrome, all people who have the disorder will not have all of the different behaviors associated with the disorder. Autism is a lifelong disability.
Children with autism are slow developing self-care, communication, social or learning skills. These skills are often uneven, having good skills in one area and poor skills in another. The person will have limitations in understanding words and ideas, and may be inappropriate responses in sight, hearing, touch, pain or balance. Relationships with people and objects may be abnormal.
Here are a list of behaviors that are Characteristic of Autistic Children: (though a child may not show all of these, showing a significant amount of them could lead to a diagnosis of an Autistic Disorder)
- Difficulty expressing needs; severe language deficits
- difficulty mixing with other children (parallel play)
- Repeats words or phrases in place of normal responsive language
- Acts deaf at times. Tests in normal range of hearing, but not always responsive to verbal cues (doesn't respond to name when called, for example)
- Resists learning
- No fear or danger
- Resists change in routine
- Indicates needs through gesture (may lead adult by the hand, instead of pointing)
- inappropriate laughing
- resists cuddling
- physical over activity
- avoids eye contact
- inappropriate attachment to objects
- spins objects
- sustained odd play
- standoffish manner
- uneven gross/fine motor skills
- laugh, cries, or shows distress for no apparent reason
- unresponsive to normal teaching methods
I took John in for a speech delay, but had also noticed these things:
- would make eye contact for only brief periods of time - nothing sustained
- Abnormal behavior of touch (wanting his hands in my mouth or armpits all the time)
- Difficult time with pointing out objects
- Communication issues (would lead my hand to what he wanted)
- Scattered skills (on a development chart he would have some advanced skills and lack basic skills like stacking blocks)
- Didn't always respond to his name when called
- always in constant movement
Characteristics seen in his evaluation
- tip toe walk
- "W" sit on the floor
- did not respond to his name
- reduced eye contact
- low joint attention (ability to point or look at an object one is directed to)
- Could representational play (imaginary play -- pick up a phone and say hello)
- short attention span
- Difficulty with imitation (this one surprised me because at home,he imitates everything Katie does)
- Could hold crayon appropriately
- Completed peg board quickly in only 25 seconds
- Could retrieve hidden toys quickly
- Easily distracted
- Could follow directions in imaginary play (feed the baby, put the baby to bed)
- needed to be reminded to "watch where he was going"
- words used were not recognizable
- Difficulty in sensory processing
- preference for mother
- engaged in non-functional activity (turning lights on and off repeatedly)
Social Skills : Tested at a 10-17 month level (he was 30 months the day of the test)
Language Skills: tested at a 6-9 month level
Problem Solving: tested at a 21 month level
An "area of concern" is determined when a child tests at 1/3 his age in any category. He was 30 months old when he was tested. Any category where he tested at 20 months or lower was labeled an "area of concern".
The pattern of development shows "at risk" behaviors for an Autistic Disorder. At this time, he has not been "officially" diagnosed with Autism. The pattern meets the criteria for an Autistic Spectrum Disorder. Early Intervention was recommended, as well as a re-test when John is 4 or 5. We are also going to be seeing an Autistic Specialist in October for a second opinion.
Saturday, July 26, 2008
John's Diagnosis
The motivation for writing this blog is my son, John. He will be 3 in November. Two months ago, he was diagnosed by Regional Center with an Autistic Disorder. His "at risk" behaviors has led them to recommending an early intervention program.
I took him in for an evaluation due to a speech delay. By 2 years old, he hadn't turned his baby babble into understandable words. He had only 2 words that were close to the correct pronunciation -- and those were not "mommy" and "daddy". He could say 'mulk' for "milk" and "butter"!!! Mommy was "baugh-in". He just couldn't move his mouth the right way to get words out. He had created his own language for things and couldn't figure out why we couldn't understand him. Temper tantrums came from frustration and life was very difficult for all of us.
John was a high maintenance baby. He is and always has been "on the go". He is in constant movement, rarely at rest, often irritable, had times when he cry inconsolably, and had poor sleep habits. From the time he was born, he was waking up 5-8 times a night. Every 45 minutes to an hour, he was usually waking up. I nursed him until ten months old and went straight to a sippy cup with milk, skipping the bottle. The milk became a security blanket for him. He'd ask for milk all the time, sometimes foregoing meals to drink milk. If he was tired, upset, or hungry, he wanted milk, and I gave it to him. By 2 years old, he was drinking between 24-36 ounces of milk a day! I had suspected milk allergies and was switching to lactose free and lowering his quantities daily. When he was tested at Regional Center and we were given the diagnosis of Autism, I decided to pull him off of milk completely. That night, we got our first full night of sleep! From that night on, he slept through the night. Life was about to change! His ability to function during the day increased with sleep. I got sleep, which helped me function better in the day!
Regional Center's findings surprised me at first, but I wanted to help John. My mind was all over the place. If I need to place a label on my child to get him help, then there will be a label on him. But, what other effects do labels have on our kids? At what point do we ask ourselves, “slightly autistic or typical boy behavior?” Is Autism the buzz word for the next 5 years? Are kids that don’t fit into a box labeled “autistic”? But, at the same time, we need to get our kids help if they need it. How do we tell if the clinical stuff is right?
The answer is simple. Be a mother. Be there for your child. Know your child. Be cautious, but listen. Fight your child’s battles. Fight for your child. Do everything you can do that helps your child. Not all advice is worth taking. Weed it out. Find out what works for your family and your child’s needs. Pray for your child. Pray with your child. I’m just starting this journey, but to ignore that journey would not benefit John. I'm going to be a pro-active parent and get John the help he needs.
I took him in for an evaluation due to a speech delay. By 2 years old, he hadn't turned his baby babble into understandable words. He had only 2 words that were close to the correct pronunciation -- and those were not "mommy" and "daddy". He could say 'mulk' for "milk" and "butter"!!! Mommy was "baugh-in". He just couldn't move his mouth the right way to get words out. He had created his own language for things and couldn't figure out why we couldn't understand him. Temper tantrums came from frustration and life was very difficult for all of us.
John was a high maintenance baby. He is and always has been "on the go". He is in constant movement, rarely at rest, often irritable, had times when he cry inconsolably, and had poor sleep habits. From the time he was born, he was waking up 5-8 times a night. Every 45 minutes to an hour, he was usually waking up. I nursed him until ten months old and went straight to a sippy cup with milk, skipping the bottle. The milk became a security blanket for him. He'd ask for milk all the time, sometimes foregoing meals to drink milk. If he was tired, upset, or hungry, he wanted milk, and I gave it to him. By 2 years old, he was drinking between 24-36 ounces of milk a day! I had suspected milk allergies and was switching to lactose free and lowering his quantities daily. When he was tested at Regional Center and we were given the diagnosis of Autism, I decided to pull him off of milk completely. That night, we got our first full night of sleep! From that night on, he slept through the night. Life was about to change! His ability to function during the day increased with sleep. I got sleep, which helped me function better in the day!
Regional Center's findings surprised me at first, but I wanted to help John. My mind was all over the place. If I need to place a label on my child to get him help, then there will be a label on him. But, what other effects do labels have on our kids? At what point do we ask ourselves, “slightly autistic or typical boy behavior?” Is Autism the buzz word for the next 5 years? Are kids that don’t fit into a box labeled “autistic”? But, at the same time, we need to get our kids help if they need it. How do we tell if the clinical stuff is right?
The answer is simple. Be a mother. Be there for your child. Know your child. Be cautious, but listen. Fight your child’s battles. Fight for your child. Do everything you can do that helps your child. Not all advice is worth taking. Weed it out. Find out what works for your family and your child’s needs. Pray for your child. Pray with your child. I’m just starting this journey, but to ignore that journey would not benefit John. I'm going to be a pro-active parent and get John the help he needs.
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