Three Times The Love: Finding Answers and Hope for Our Triplets with Autism
By Lynn and Randy Gaston
Lynn and Randy Gaston longed to have children of their own. After many years of trying they were blessed to find out that they were expecting triplets. Lynn had a highly monitored pregnancy and delivered the boys via C-section at 35 weeks after Lynn went into labor. Once they had all three boys home the delightfully settled as parents and as a family.
When the boys turned 18 months old Lynn, who was home with them all day every day, started to notice that they weren’t developing “normally”. This was just the start of the long road that Lynn and Randy went down trying to find out what was wrong with their boys and to find them the help they both knew the three of them desperately needed.
Their journey included years of doctors, a misdiagnoses of mental retardation for two of the boys by their local school district, hiring their own therapists, having to sell their home in order to afford the therapies, and finally moving to a new school district. When the boys turned 4 they finally got the diagnoses that Lynn has suspected all along. Autism. All three. All three at a different level on the spectrum.
Their heartbreaking yet heartwarming story of hope is one that every parent going through or gone through the struggle of getting their child the help needed can relate to. But yet it is more than that. The determination and love that these two people have not only for their boys but for each other is outstanding. In a world where the divorce rate is 80-85% they are dedicated to do whatever necessary for their children and to do it together.
At the end of the book Lynn and Randy have a resource list for you to check out.
I was unable to put this book down until I read it cover to cover. I also went through a box of tissues. I think every ASD parent must read this book. Two thumbs up! And all ten toes!
Wednesday, November 24, 2010
School and Safety
I apologize for how late this next posting is.
I have been dealing with school issues with JuneBug. But this is how autism works. Right now he has been placed on a homebound IEP and we are starting the paperwork to get him into a different school that is much more equipped to handle his outbursts.
During this my fiancé got us a membership to The Autism Society of Minnesota. I urge everyone to join. Their website is www.ausm.org .
In the midst of all of this I started to feel very tired and run down. Finally dragging myself into the doctor’s office I found out that my iron level was low. Was a nice reminder from my body to also take care of myself. So please forgive an overworked, overly tired mom. I will make more of an effort to post regularly.
Ok now that that is out of the way let’s get down to brass tacks.
This next topic is kind of a mixed bag. I will briefly cover a couple of topics that later we will go into more detail on.
First let’s go over some of the acronyms that you will be hearing. And what they mean.
IFSP – Individualized Family Service Plan
This is what you will have if your child is birth to age 3. This outlines how much and what type of services that your county will provide to you. This plan must be completed within a certain number of days from the date of referral to your local Early Intervention program. This plan must be renewed every 6 months and reviewed once a year. Any changes made must be presented to you in written form before the changes are implemented.
IEP – Individualized Education Plan
This is the plan you will have in place when your child enters school. This is what allows your child to receive his or her special education needs. This is somewhat similar to a 504 plan expect that it is much more specific. Under a 504 plan schools just have to provide accommodations, with an IEP these accommodations are spelled out exactly. Also timelines are included, yearly reviews are done and so on. Like the IFSP changes to the plan must be submitted to you in writing and this plan needs to be reviewed once per year.
ABA – Applied Behavior Analysis
This is a therapy technique that has had great success with children with ASD. It is designed to break down tasks into simple, easy to digest parts. The use of positive re-enforcement is used.
ASD – Autism Spectrum Disorder
This is used to further describe that fact that autism is a spectrum disorder, meaning that the symptoms can range in severity from person to person.
PDD – Pervasive Developmental Disorders
As of the date of this post this is the category that Autism, PDD-NOS and Asperger’s fall under in the DSM-IV.
DSM-IV – Diagnostic and Statistical Manual of the American Psychiatric Association, fourth edition
This is the manual which doctors use to diagnose. It is written and published by the American Psychiatric Association. The Fourth edition is the current one, it was published in 1994. A fifth edition is in the works and is planned for publication in 2013. You can follow its progress here http://www.dsm5.org/Pages/Default.aspx
GFCF – Gluten Free/Casein Free
This refers to the diet that some parents put their ASD kids on. Though there is no scientific evidence that this works, most parents report to see a marked improvement in the behavior of their children.
DAN! Doctor – Defeat Autism Now! Doctor
These are doctors who use biomedical interventions in the treatment of autism. The DAN! Protocol involves the treatment of the child as a whole, including diet changes, running blood tests to see if the child has any definceies in minerals or vitamins’.
ADD/ ADHD – Attention Deficit Disorder/ Attention Deficit Hyperactivity Disorder
These are most commonly known behavioral disorders in children. The reason I have included them is because some of the charactistc of these two disorders are very close to some of the charatics of autism.
This list is by no means complete nor are the explanations all-inclusive. To get more information you can simply Google each one.
This next statement is a bit of a “duh!” but it has to be said. Your child has a right to a public education even though they have autism. There are federal laws mandating this and protecting to your child. Even if your child has to be taught at home, these services are to be provided to you free of charge. Note that I did say public education, if you want to put your child into a private school I would ask how that school will help your child. Some parents do choose to home school their children, and some like HW2K have found an online school for their children. So yes you do have choices when it comes time to decide on the type of education for your child. Just make sure that you fully research each choice and choose the one that will be the best fit for your child. From here on out the question you need to ask yourself when it comes to you ASD child is this “What is in the best interest of my child?” or “How will this benefit my child?”.
Now we come to the safety of and for your child.
This is the part where you really need to be honest with yourself and with others involved. You need to identify the problem areas that could negatively impact the safety of your child.
Is your child prone to wandering?
If you answered yes than you need to take proactive steps.
1. Install a deadbolt that needs a key on either side to lock
a. If you rent ask your landlord if you are able to do this, explain about your child’s autism and the need to keep them safe. Most landlords will allow this if you provide them with a key.
2. Install alarms on all doors the lead outside and windows
a. You can get these at Radio Shack, Target, or online. They are battery operated and just stick on.
3. Move all chain locks up out of the child’s reach.
The eventual goal is to teach your child that it is not safe to just wander off or to take off running. But the above listed steps can help give you some level of comfort. (The last thing you need is more stress)
You should also prepare an emergency kit in the unfortunate event that your child goes missing, and you should have an emergency plan.
The kit should contain:
Some type of printed document with your child’s name, age, physical description (including any scars, birthmarks, etc), your child’s official diagnosis, any medications they are on, and any special medical needs. You should than explain if your child is verbal or non verbal. How your child communicates, what noises or sounds scare your child or what noises or sounds they are attracted to. List what places your child likes to go, include the “dangerous” ones also like pools, lakes, ponds. With the technology of today and the fact that most of everybody has a digital camera take a photo of your child after they get dressed for the day, that way you have a recent photo of the child and a photo including what they were last wearing.
Find friends and neighbors who are willing to be “search angels”. Assign them each an area. Have a list of their names, phone numbers and the area they are assigned to.
If you have other children find someone who will be your Emergency coordnatior. Have the name and number of this person in the kit also.
Now the steps that I think you should take:
1. Once you have noticed that the child is missing do an immediate and though search of your home, property and neighborhood.
2. Alert your “Search Angels” and have them head to the places that they are assigned to
3. CALL 911!
4. Inform the dispatcher and the first officer on the scene that your child has autism.
5. Give the first officer on the scene your emergency kit.
6. Try and remain calm.
Now there are devices that you can purchase that are a tracker for your child. But we will cover them on a different post.
I think that is enough for now. Don’t need to overload you with too much.
I have been dealing with school issues with JuneBug. But this is how autism works. Right now he has been placed on a homebound IEP and we are starting the paperwork to get him into a different school that is much more equipped to handle his outbursts.
During this my fiancé got us a membership to The Autism Society of Minnesota. I urge everyone to join. Their website is www.ausm.org .
In the midst of all of this I started to feel very tired and run down. Finally dragging myself into the doctor’s office I found out that my iron level was low. Was a nice reminder from my body to also take care of myself. So please forgive an overworked, overly tired mom. I will make more of an effort to post regularly.
Ok now that that is out of the way let’s get down to brass tacks.
This next topic is kind of a mixed bag. I will briefly cover a couple of topics that later we will go into more detail on.
First let’s go over some of the acronyms that you will be hearing. And what they mean.
IFSP – Individualized Family Service Plan
This is what you will have if your child is birth to age 3. This outlines how much and what type of services that your county will provide to you. This plan must be completed within a certain number of days from the date of referral to your local Early Intervention program. This plan must be renewed every 6 months and reviewed once a year. Any changes made must be presented to you in written form before the changes are implemented.
IEP – Individualized Education Plan
This is the plan you will have in place when your child enters school. This is what allows your child to receive his or her special education needs. This is somewhat similar to a 504 plan expect that it is much more specific. Under a 504 plan schools just have to provide accommodations, with an IEP these accommodations are spelled out exactly. Also timelines are included, yearly reviews are done and so on. Like the IFSP changes to the plan must be submitted to you in writing and this plan needs to be reviewed once per year.
ABA – Applied Behavior Analysis
This is a therapy technique that has had great success with children with ASD. It is designed to break down tasks into simple, easy to digest parts. The use of positive re-enforcement is used.
ASD – Autism Spectrum Disorder
This is used to further describe that fact that autism is a spectrum disorder, meaning that the symptoms can range in severity from person to person.
PDD – Pervasive Developmental Disorders
As of the date of this post this is the category that Autism, PDD-NOS and Asperger’s fall under in the DSM-IV.
DSM-IV – Diagnostic and Statistical Manual of the American Psychiatric Association, fourth edition
This is the manual which doctors use to diagnose. It is written and published by the American Psychiatric Association. The Fourth edition is the current one, it was published in 1994. A fifth edition is in the works and is planned for publication in 2013. You can follow its progress here http://www.dsm5.org/Pages/Default.aspx
GFCF – Gluten Free/Casein Free
This refers to the diet that some parents put their ASD kids on. Though there is no scientific evidence that this works, most parents report to see a marked improvement in the behavior of their children.
DAN! Doctor – Defeat Autism Now! Doctor
These are doctors who use biomedical interventions in the treatment of autism. The DAN! Protocol involves the treatment of the child as a whole, including diet changes, running blood tests to see if the child has any definceies in minerals or vitamins’.
ADD/ ADHD – Attention Deficit Disorder/ Attention Deficit Hyperactivity Disorder
These are most commonly known behavioral disorders in children. The reason I have included them is because some of the charactistc of these two disorders are very close to some of the charatics of autism.
This list is by no means complete nor are the explanations all-inclusive. To get more information you can simply Google each one.
This next statement is a bit of a “duh!” but it has to be said. Your child has a right to a public education even though they have autism. There are federal laws mandating this and protecting to your child. Even if your child has to be taught at home, these services are to be provided to you free of charge. Note that I did say public education, if you want to put your child into a private school I would ask how that school will help your child. Some parents do choose to home school their children, and some like HW2K have found an online school for their children. So yes you do have choices when it comes time to decide on the type of education for your child. Just make sure that you fully research each choice and choose the one that will be the best fit for your child. From here on out the question you need to ask yourself when it comes to you ASD child is this “What is in the best interest of my child?” or “How will this benefit my child?”.
Now we come to the safety of and for your child.
This is the part where you really need to be honest with yourself and with others involved. You need to identify the problem areas that could negatively impact the safety of your child.
Is your child prone to wandering?
If you answered yes than you need to take proactive steps.
1. Install a deadbolt that needs a key on either side to lock
a. If you rent ask your landlord if you are able to do this, explain about your child’s autism and the need to keep them safe. Most landlords will allow this if you provide them with a key.
2. Install alarms on all doors the lead outside and windows
a. You can get these at Radio Shack, Target, or online. They are battery operated and just stick on.
3. Move all chain locks up out of the child’s reach.
The eventual goal is to teach your child that it is not safe to just wander off or to take off running. But the above listed steps can help give you some level of comfort. (The last thing you need is more stress)
You should also prepare an emergency kit in the unfortunate event that your child goes missing, and you should have an emergency plan.
The kit should contain:
Some type of printed document with your child’s name, age, physical description (including any scars, birthmarks, etc), your child’s official diagnosis, any medications they are on, and any special medical needs. You should than explain if your child is verbal or non verbal. How your child communicates, what noises or sounds scare your child or what noises or sounds they are attracted to. List what places your child likes to go, include the “dangerous” ones also like pools, lakes, ponds. With the technology of today and the fact that most of everybody has a digital camera take a photo of your child after they get dressed for the day, that way you have a recent photo of the child and a photo including what they were last wearing.
Find friends and neighbors who are willing to be “search angels”. Assign them each an area. Have a list of their names, phone numbers and the area they are assigned to.
If you have other children find someone who will be your Emergency coordnatior. Have the name and number of this person in the kit also.
Now the steps that I think you should take:
1. Once you have noticed that the child is missing do an immediate and though search of your home, property and neighborhood.
2. Alert your “Search Angels” and have them head to the places that they are assigned to
3. CALL 911!
4. Inform the dispatcher and the first officer on the scene that your child has autism.
5. Give the first officer on the scene your emergency kit.
6. Try and remain calm.
Now there are devices that you can purchase that are a tracker for your child. But we will cover them on a different post.
I think that is enough for now. Don’t need to overload you with too much.
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