Wednesday, November 24, 2010

Book Review - Three Times the Love

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!

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 .
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
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.

Wednesday, August 25, 2010

My Story Thus Far

My Story……thus far

Greetings! I am Mindy, mother to the CuddleBugs, JuneBug and LoveBug. My oldest, JuneBug, is my ASD child. Our journey didn’t start right at the start with an ASD diagnosis. It started with a Developmentally Delayed diagnosis around the age of 18 months. I had a feeling that something was up with his speech due to all the ear infections he had suffered. What I didn’t know was how much more it was than delayed speech. This is my story…….thus far.

My JuneBug was born June 11, 2004 via C-section. This was an emergency, due to the fact that he was transverse (sideways) and had the cord around his neck twice (this was discovered at the time of birth). I had also been laboring for 24 hours, 12 of which were induced with Pitocin. He was cyanotic (blue), though once they got the cord off his neck he started to “pink-up”. His apgar scores were average (thank god). I had a bit of a problem with post-surgery bleeding, but was brought under control with the help of Pitocin. After 3 days in the hospital we were both released to go home.

Our first medical condition started with JuneBug being diagnosed with Colic. His upper lip was tethered and was unable to form a tight “seal” around the bottle nipple or breast. I started to bottle feed exclusively due to the fact that he had to be feed 2 oz. every 2 hours. At 8 weeks of age he had his first surgery to release his lip, once he recovered from that feedings were normal. But he still wasn’t sleeping for long stretches of time.

Around 6 months he started to get ear infections, sometimes in both ears at once. He was on a revolving door of antibiotics. During all of this I noticed that he wasn’t talking, not even babbling, just grunting or screaming. I told this to the doctor who then referred me to an ENT (Ear, Nose and Throat Specialist). This ENT said that JuneBug wasn’t talking due to the fact that he needed tubes to help drain the fluid in his ears. So in went the first set of tubes. Infections still continued and so did the antibiotics and so did the not talking. We were referred to a different ENT who told us that the first set of tubes put in were too small, one was completely blocked and one had already fallen out. So another surgery was scheduled. That brings us to 3 surgeries all before JuneBug turned two.
At his 18 month check up I mentioned that he still wasn’t talking, just grunting and screaming. I was giving the wait and see answer.
6 longs months later and it was time for the 2 year check up. He still wasn’t talking. We were referred to the school district for assessment. JuneBug was found to be Developmentally Delayed. It was Global Delay, due to the fact that not only was his speech delayed, but also his fine motor skills and social skills.

Well to make a long story short after a long road we finally have our diagnose of PDD. JuneBug is on two meds and doing great at school.

I will be sharing more detail of my story as time goes on.

My first tip: Pick your battles.

Tuesday, August 24, 2010

HW2K, an introduction, of sorts

Good morning all, sorry for the delay, but as many of you know, when you have a kid on the spectrum, planning on doing something the next day means it gets done anywhere from 15 minutes after you planned it to a month later!
I am HW2K, or Housewife2000. I have three sons, Hermes, who is 9 and entering 4th grade, Loki, who is 4, and Thor, who is 5, almost 6. Thor is the child you will hear and read the most about here.
Thor had a troubled pregnancy, I was on a lot of bedrest, and various and sundry meds. His delivery was long and hard to induce, but induction was necesary. Of the three, Thor was the smallest at birth, and only had a 2 vessel umbilical cord. Thor had Colic from 2 weeks to about 3 months of age, it was torture. Thor had breathing problems, and infant and toddler asthma.
There are, in retrospect a ton of things that tipped me off that he was different, but no parent wants to admit that something may be not right with their child.
At just about 2 years, Thor was diagnosed as having PDD_NOS (Pervasive Developmental Disorder, Not Otherwise Specified. In layman's terms, he was on the Autism Spectrum, they just didn't know where, or how severe. Add to this is Sensory Integration Dysfunction, Synesthesia, OCD tendencies, and the list goes on. I soon found that it seems doctors prefer to just add acronyms to the original diagnoses instead of changing it unless a major milestone has happened, or the new diagnoses seems somehow 'better'.
Over the 4 years since then, life has been a roller coaster. There are good days and bad days, ups and downs. I am rather fortunate to have Hubby by my side, as well as the support of my family. In total honesty, the support of friends and family os both one of the most stress relieving things there is, as well as one of the biggest stressors there is.

As this blog progresses, you will learn more about me, and Mindy, who has been a friend and chosen sister to me for over 15 years now. You will learn more about our children's backstory, what is going on in day to day life, how we deal, and hopefully, others will leave their stories and insights in the comments. We will discuss researcg done by professionals, research done by os and those near to us, resources, at as many levels as possible, and let you into a slice of our always hectic lives. Do not be surprised if you notice a routine start in our posting, not only the day, but the time of day, something is posted. Having a kid on the Spectrum is having a routine. Granted, there will be times when posts are far between, as when the kids need us, the internet must wait.

As a parting for this post, I will share a statement that I make often, a friend taught me, and I find true every time I meet someone new on the Spectrum. When you know one person with Autism, you know one person with Autism, we are all different, but something has to be the same.

Friday, August 13, 2010


Welcome to Navigating the Spectrum.

Our title really says it all, Navigating the Spectrum, two mothers experiences with ASD. We are both stay-at-home, work at home, moms, who are also students, and have children on the autism spectrum. Neither of us are doctors or nurses, neither of us have medical degrees. What we do have is experience raising boys on the spectrum, as well as 'neurotypical' kids, boys who are not on the spectrum.
We hope to impart our gained wisdom, resources, irritations, joys, support, and whatever else we can.
Introductions to both of us will come later, we just wanted to welcome anyone and everyone, and let you know that we are here, this is a safe space for questions, rants, vents, comments, or anything else, and remind you that, no matter what, you are not alone!