Find Out What Jen Finds

My journey on the spectrum of life … and the lessons I learn along the way …
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about Communication: sharing the diagnosis with your child

  • August 31, 2012 4:42 pm

I went by the library to pickup a few books I had on hold. One for The Younger: How to Talk to an Autistic Kid, and this one for The Elder: The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents).

I thumbed through it and was really excited about it. The Survival Guide for Kids with Autism Spectrum Disorders Then I had the worry…What if he doesn’t want to read it? I mean, I think this is something that he would want, and I think this is something he would need. But he has never asked me anything about autism. And if I approached him he responded with the annoyed tone of a teenager. My best strategies so far have been to set something up and just do it. Find videos, make him watch it. Find books, make him read them. Find games, make him play them. He does that with no issues. But have a conversation about this? Forget about it. How do you communicate about a communication disorder??

This book seems different than the books I’ve seen in the past. It is a survival guide geared for ages 8-13. It’s more like a textbook with real-life stories for examples, instead of social stories of how to act in certain situations – but it also includes solutions such as these. The first 7 chapters cover “What is ASD?” in a very kid-friendly presentation. A whole chapter is dedicated to Sensory issues. If I was THe Elder, I would think it was really cool, thus the reason I checked it out!

After School Convo:
M: Hey E, I wanna show you the book I got for you at the library today.
E: Hold on! (impatient tone – making me nervous) OK, I’m coming (happy bouncy tone – nervousness gone)
M: (Showing him the cover and just letting him read the title) I got this for us to read together.
E: (no response)
M: (Flipping through the pages so he can see all the pretty colors and pictures)  I think it will help answer a lot of the questions you might have about autism (assuming he had them, of course)
E: (no response)
M: (wondering if this was a bust and glad I got it from the library before purchasing) I thought maybe we could go through one chapter at a time.
E: (he gets up quietly and walks back down the hallway as he responds) Well, I have run out of books to read at night.
(Note to self: pick up more chapter books from the library)
M: (yelling after him down the hall) And if you like it and think you can use it for the rest of your life, we can get your very own copy!
E: Sure.

Yes!! My foot is in the door! Now I just need to get to Chapter 6 “Think About it, Talk About it” which clearly states “Ask Questions.” Because you know if it is a rule in the Survival Guide, then he must follow the rules! I think he will thank me for it…

More later as we begin the journey…

How do you communicate with your child about his/her diagnosis?

about Moods: finding relief naturally (part 1)

  • August 15, 2012 9:42 am

I’m anti-prescription when it comes to treating mood issues. I’m not against it for other people IF it is working for them. In fact, I wasn’t against taking a prescription myself when I thought it was working for me. The problem was that it was working against me, and I was blinded by the short term relief I felt when I started the regimen. Once I realized I was adversely reacting to my meds, I worked with my doctor to wean me off one, and then a year later said buh-bye cold turkey to the rest of them. It’s been almost 18 months that I have been 100% medication free! Including NO tylenol et al, NO allergy meds, NO vaccines, NO antibiotics – nothing prescribed or over-the-counter. Yay for me!

But…

My moods suffered. Not constantly. But

lots

of

mood

swings.

I do believe that I have earned my moods swings. After all, parenting is tough. Parenting special needs kids is tougher. Plus an Aspergian (a very adorable and loyal and all around great guy, I might add) for The Hub and that’s the tune that gets my moods “just a swangin’!” And when I swing, I take The Hub and The Brothers with me. Unfortunately, a family that swings together does not swing together, if you catch my drift. I’m proud to say, not one of us uses medication on a regular basis. The Hub and I are both 100% med free. The Brothers are 99% med free (allergy season is a bear in our region).

I have been working on my diet for the last 18 months, beginning with a clean slate (literally, I fasted for a few days). It was then I took out red meat and soy and some other things. NOT because I didn’t like eating them. NOT because I had an adverse reaction to them. I only took them out because they are so hard to digest and digestion takes up energy and I wanted my body to use its energy to HEAL, not to digest. I knew it would be temporary when I started but, I got a hold of some resources that made me so glad that I stopped eating them (The Omnivore’s Dilemma, for one). Very good and important information that everyone ought to know, but now I know it’s only part of the story. And to stop there is very dangerous – to me and the victims of my mood.

In the next couple of blog posts, I’m going to share some of the remedies that are so far working for our family. I set out to fix my own ability to cope with my circumstances and discovered many overlaps for each member of our family. If you could use this information, please include comments/feedback for me to address in the sequels of this post.

Now for the rest of our story…

about Carpe Diem: at least I’m seizing something

  • January 6, 2012 10:05 pm

If you never read any more of this blog post of mine, you MUST, without fail, follow this link and read Glennon’s blog post.

I’m glad I took the kairos time (that will make more sense if you’ve read her post) to read this raw and beautifully written article. I think all parents should read it, but especially the parents of special needs children. Its message, I believe, goes further to affirm us as we face the very different challenges on a daily basis.

I get caught up in the guilt of not “enjoying every moment of their childhood before it’s too late.” I can’t honestly say I loooove parenting. It’s not my gift. It’s the hardest thing I’ve ever had to do. But it is the most rewarding thing I’ve ever done. I do loooove being a parent, or as Glennon says “having parented.” I have an influence on them, not just as their parent, but the one and only role of being their mother. I’m way far from perfect, but at the end of the day, I’m learning to pat myself on the back for getting though another day – for finding the one (it’s usually more than one but I like to set myself up for success) instance of hope, glimmer of beauty, evidence that something I tried to pass on actually did, proof that some therapy I paid for was worth its investment.

It reminds me of my favorite clip from the movie “The Back-up Plan.”


You know, when I really think about it though, I’m actually very lucky because statistically, I feel like I have more opportunities to seize moments of hope and beauty. On those days that I’m up to my eyeballs in tantrums, strewn legos, and broken computer peripherals and I look at the clock and it’s only 8:30 in the morning, I need that moment when I hear the distant, unprompted toilet flush. I don’t know if that makes sense or not. Maybe a story would help illustrate.

Today, we took The Skipper Dog to the vet. It was quite an intense appointment (about a different kind of seizing :( ), so both me and The Hub went and of course had to bring the kids. We left them in the lobby with the directions that they were in charge of only themselves, to make sure they made themselves make good choices. About after 15 minutes of being back with the vet, I heard The Elder screaming in the lobby. I went out there and he was sitting criss cross applesauce on the bench screaming:

E: “Y is touching me!”
M: (to The Younger) “Don’t touch him.”
Y: “But I want to sit here.”
M: (to The Elder) “Choose a different place to sit”
E: “But that place has a scary thing, and that place is too close to the vent, and that place is touching that plant, and that place is near the magazines.”

The Younger couldn’t really top that so (with maternal encouragement) he moved to a chair on the other side of the lobby. I was able to return to the patient room without missing too much of the vet’s testing-results spiel.

Let’s list the obvious triumphs. (triumphs that I must say make me one proud mama!)

  • I was comfortable leaving them both in the lobby (not without my super sonic ears open to eavesdrop on their every word)
  • The appointment was nearly an hour long and I only had to intervene once.
  • There was 15 minutes before the onset of the intervention.
  • The intervention was pretty painless and straightforward.

Now the not-so-obvious triumphs.

  • The Elder was sitting on the bench – and criss cross applesauce to boot. (This would be opposed to wallowing in the floor or running outside in the parking lot)
  • He verbally expressed his case of why he should be allowed to remain where he was seated. (as opposed to physically expressing his case with his fist or teeth or saliva)
  • The Younger complied on first request (not without whining, but without any oppositional defiance)

Finally the triumphs that could easily slip away if I wasn’t intentionally seizing them.

  • The Elder had all of his clothes on, including his shoes.
  • Both kids were wearing their glasses at all times.

Therefore in a single event, I’m able to seize greater than 100% more triumphant moments! Sometimes all I can walk away with is the fact that “Both kids were wearing their glasses at all times,” and sometimes I can’t even claim that moment and must settle for “We found their glasses before we left, flung atop the the silk tree in the lobby, and eventually repaired them, at no additional cost.” Maybe I’m crazy, but that makes me feel lucky!