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.
Wednesday, August 25, 2010
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.
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!
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!
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!
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