Introducing: The Special Needs Moms Show

Okay, I'll admit it, when it comes to taking care of my family, I'm a bit of a control freak.  I am on top of everything (or try to be!).  As the mom of 2 boys, including one with autism, I am in charge of coordinating appointments, filling out paperwork, and making sure they're getting everything they need.

But I'm not so good at taking care of myself.  I am always last on my "To Do List".  Between being a full time mom and working full time, I just don't have enough time to take care of all of my needs.  Whether it's going to the salon for a haircut, working out, or even just taking a relaxing bath, it's hard to find the time!

I've come to realize though, this isn't a good life plan.  Taking care of everyone else- my kids, my husband, my co-workers- but by not taking care of myself, I'm putting my own health at risk.  So when my friend and fellow special needs mom, Kathy Kelly, asked me to join her on her new podcast, I was excited and up for the challenge.

The Special Needs Moms show is for moms who have kids with special needs.  But instead of talking about our kids and their special needs, we're talking about us and our special needs!  Together we will explore realistic ways to stay healthy.  So if you're the mother of someone with autism, sensory processing disorder, down syndrome, ADHD and/or other related conditions- this is the podcast for YOU!

Want to hear more?  Check it out on iTunes, and subscribe today and join you can join the conversation in our community on Facebook.

When Are We Going To Do More For Our Children?

Since I started writing my blog, I have heard from a lot of you and I love it!  I’ve talked to people I haven’t talked to in years and I'm so happy about that. Writing about our journey with Nathan has resonated with a lot of people.  I am so glad I am able to help, but it's also made me mad. Really mad. When is more going to be done?  When are we going to figure out why so many children are being diagnosed with not only autism, but also ADHD, asthma and allergies?

In 2007, one of Nathan’s doctors, Dr. Kenneth Bock, wrote a book called "Healing The New Childhood Epidemics, Autism, ADHD, Asthma and Allergies, The Groundbreaking Program for the 4-A Disorders”.  That was 8 years ago, yet nothing has changed since then. The number of children diagnosed each year with these disorders continues to go up.  A lot of people, including researchers, say, “It’s better screening and diagnosis”.

Really????  1 in 68 children (and 1 in 42 boys) has autism because of better diagnosis?  What about ADHD?  The CDC reports that in 2011- 11% of children had been diagnosed ADHD and diagnosis rates has been increasing every year since 1997. Because autism and ADHD are diagnosis clinically and there are no blood tests or x-rays, it's easy to say it's just better diagnosis and the number of children impact really isn't going up.

It's not as easy to brush off allergies and asthma. The CDC says both food and skin allergies are increasing steadily among children with 5.1% of children having food allergies and 12.5% having skin allergies in 2011. The CDC reported that in 2011 1 in 12 people have asthma and those rates increase every year.  Hmmm.. how are we going to explain that? Because there are actual allergy and asthma lung function tests, we can't really say that's because of better diagnosis now can we?

There is a reason that more and more children are being diagnosed with these disorders. But what is it? I don't know! Could it be the food we eat? Could it be vaccines? Could it be pollution in the air or water? Could it be something else? I don't know! But it must be something! When are we going to figure it out? When are we going to stop this cycle? I know there have been studies that have found no connection to food, pollution or vaccines- but we can't give the entire population of children milk or peanut butter or a vaccine and expect that all of them will be fine- some will NOT be fine! I'm going to repeat- I DON'T KNOW why the rates of these disorders are going up. But I do know that there is a reason. When are we going to figure it out? When are we going to do more for our children?

Flapping or Flopping?

Nathan has been taking Intuniv for about a year and a half.  It is actually a medication for ADHD, but helps Nathan with impulsiveness, flapping or stimming (this is when Nathan runs around in a circle, with his hands and arms flailing making a high pitched squeaking sound), and meltdowns.  In general, I don't like medicating kids.  But after consulting with our pediatrician we decided to start the medication during a particularly bad school year, when he was having daily outbursts.

Nathan was doing so well on his medication,
I thought he didn't need it anymore

About a year after he started taking it, Nathan was doing amazingly well.  So, of course, I thought he didn't need it anymore.  I reached out to the pediatrician and asked him about taking Nathan off the medicine.  Since Nathan was on the lowest possible dose- 1 mg/day- we didn't have to ween him off of it.  Within days, I realized I had made a huge mistake.  Nathan was having more severe outbursts than ever, hitting his aide in school, his brother, cursing, throwing things.  It was like he was possessed or something.

Minutes after a meltdown, Nathan would fall asleep,
even sitting up, on the couch

After a couple of weeks, I called the doctor again and he said to resume the medication.  It didn't seem to work anymore.  We kept him on the 1mg dose for about six weeks (we were hoping his body would get used to the 1mg dose), but we didn't see any improvement.  I called the doctor again who increased Nathan to 2mg.  We saw an improvement in flapping, but Nathan was so tired.  He had no energy at all, and his body was just floppy.  He napped in school, he napped at camp, he napped at theme parks!  At first the doctor said to give it time.  He was also still having pretty bad meltdowns, then immediately afterward, he would just fall asleep.

He even fell asleep while at Six Flags Great Adventure

A couple of weeks ago, I switched his medication from the morning to evenings.  I was hoping if we gave it to him at night he would have more energy during the day.  No such luck.  I started to get nervous that perhaps there was something else going on.  I called the doctor again who said to bring Nathan in for a series of blood work.  I asked him if we should try a lower dose first he said ok, we can try it.

This weekend, Nathan asked me and Drew to play Operation

He even sat patiently and waited during Drew's turn,
and congratulated Drew when he won!

Well, it's been a week since he started the lower dose, and Nathan is like a totally different kid!  He is spending less time on the computer, he actually asked me and Drew to play Operation with him this weekend.  We spent time laying in the hammock talking about our upcoming trip to Walt Disney World, and he bonded with his cousins while staying with my parents.  He has had a few outbursts, but much less frequent- although still really bad.  And he's flapping- a lot.

Nathan and I relaxed in the hammock in the
backyard and talked

I still don't like medicating children, but sometimes it's necessary.  Finding the right dosage can be hard though.  We need to keep the impulsiveness to a minimum, but I would much rather have him flapping than being so tired that he's floppy.  But medication should not be used in place of therapy either.  We have a therapist coming to the house to help Nathan control his outbursts and to help us know what to do when they happen.