LIFE IS A SPECTRUM

springchicken

By now, you know all about my Spring Chickens Tribe in the blogging network SITS, where our group of moms of special needs kids connects to talk about everything from how to create a button for a blog to how to survive their child's IEP meeting. If you're a mom with a child with any kind of special needs, and you blog, I'd love to invite you to join us. Just go sign up with The SITS Girls (free, of course) and join our tribe in the Spring Chickens Forum.

Today, I'm delighted to introduce you to Melody from My Twisted Stitches. In addition to raising three kids, two of whom struggle with behavioral/emotional disorders, Melody's job is made that much more challenging by her own ADD. Still managing to keep her sense of humor and share her journey with an open, honest heart, Melody is a true inspiration. So stop by My Twisted Stitches, follow Melody or subscribe to her fascinating blog by email. And tell her I said, "Hi!"

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When you have a child with behavioral issues attached to a mood disorder, the entire family is impacted. Sometimes it’s like experiencing the aftershocks from an earth quake where you live with the trepidation that at any moment the slightest shaking could become cataclysmic. Other days you are aware that every moment is a bombardment of agitated aggression, irritation, and frustration let loose in the form of verbal assaults, whining, and general chaos created in your living space. It is an exhaustive time for all, where your adrenaline is constantly flowing and nerves are left twitching. The child initiating the mayhem can spend hours in and out of time-out, or wrestling with consequences, but in the end he/she has succeeded in monopolizing everyone’s time and attention. This is our life.

The behavioral issues reared their ugly head at a tender age, and there was a strong early independence and tenacity that I was actually VERY proud of. These are characteristics I prayed for in my children, but in a “baby” they can certainly be a challenge. I found my first born to be extremely determined, seemingly fearless, and intensely curious. Language acquisition was easy for her; consequently, when with her peers she would be busy “teaching” in her bossy way as she thrived on telling others what and how to do things. Unfortunately, her reactions to their apparent lack of responsiveness toward her were fiercely intense and redirecting her was nearly impossible. She would persist (and still does) in holding onto an idea in order to get her way.

Over time she became extremely manipulative and overbearing. Consequences didn’t seem to make an impact and she rarely showed sadness or remorse for her behavior, rather she would demonstrate intense anger at her consequences or at the person implementing them. In addition, she would often find a way to retaliate later either toward the person who disciplined her or the person she was originally angry with. To make matters worse, small conflicts or differences of opinion could turn into huge issues in which irrational rage would erupt. It was often difficult for her to control her actions. On numerous occasions she would have to be physically contained to prevent damage to others or property. We used to say that she was “freakishly strong.”

Our second child joined the family when our first was 18 months and she was (understandably) very jealous. I became the “mama bear” to protect my newborn from his older sibling and struggled to balance caring for them both. Maybe I established the pattern of victim and aggressor right then, but if so why can’t we break out of that? I do have to say that there are many days when my children have their moments of playing well together and cooperating; it always seems tense and tenuous though. I know they both want to love each other, but there is such intensity of whatever emotion at the moment that they let loose on each other. I know it has been said, that we hurt the ones we love the most, but wow!

Now, there is a third dynamic at play. Along with the birth of our third child came increased jealousy, decreased "Mommy" time, and an increased need for shared space and stuff (which seems to be inherently difficult anyway). Intense behaviors, along with extremely poor emotional regulation began to spiral downward from there. I have sought help every step of the way and I hope we are climbing back up the ladder to stability and emotional security. Each of us have required support to move forward. As a Mom with attention deficit disorder, anxiety, and depression - although being treated myself - I find the struggle to help my children is like running a marathon, DAILY!

I have come to believe that when there is an individual in the household who is as unpredictable and volatile as what we experience on a regular basis, there is NOT a normal family dynamic (albeit there may be no true “normal”). Moreover, when it is the eldest child, the siblings develop in a way that is also uncommon as they require heightened natural defenses just to “survive”, let-alone thrive. The family structure is strained and if the marriage isn’t already a rock, the pressure can crumble its fragile existence.

So what are parents to do? We have to parent the children we have. Can we prevent one child from affecting the entire family?

Melody is a certified teacher, now a stay-at-home mom of three beautifully challenging children; the two oldest (8yrs. and 10yrs. old) have been diagnosed with childhood bipolar disorder while the 3yr. old is learning and growing by leaps and bounds. She blogs at My Twisted Stitches and she is a Parent Blogger for Empowering Parents. Her days are filled with activity that require a tremendous measure of energy, stamina, and courage!

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Back from the Brink

I'm FINALLY totally over this flu ... I think (knocking heavily on wood) and I wanna thank everyone for the kind wishes I got through email, Facebook, Twitter. With any luck, I'll be back in the blogosphere by the end of the day.

I want to especially thank Melody for providing her wonderful guest post for Friday ... it couldn't have come at a better time, as I was feverishly rambling and incapable of forming a coherent thought, much less typing :-)

Thanks for sharing!

Mel:

Wow, what a story! Thanks for sharing it.

Anyway :*P

Amanda, I can't believe it has taken me this long to actually, successfully submit a commmmmmmment here :)! I have tried twice and the server crashed, so now it is 7 ish and the kids are set up with "Milo and Ottis" so I'll try again.

Thank you, Thank you, Thank you so very much for hosting my post and supporting my efforts as both a Mom and a blogger. I think you are truly amazing and I'm constantly in awe. I love to read your work and admire your strength. It was an honor to be featured here on "Life Is A Spectrum". I find that my bipolar kiddos have a surprisingly large measure of common features with the Asperger Spectrum; in addition, I heard for the first time this week, the term "spectrum" used to describe the range of Bipolar Symptoms. If you are interested I happened to put a video clip up this week on my blog where this is mentioned. It is the "True Child Within" Youtube clip.

Thank you again for hosting me! I feel a kinship that I can't describe.

Mel~

Ummmm... That comment was suppose to be for your anniversary post!

I am so sorry about that irrelevant comment a moment ago. I thought it was going under yesterday's for your anniversary. It was my second attempt as the server crashed mid typing and popped back up "here", but I thought it just kicked off my comment....
Weird! Please Delete These!

*sobbing*

Tears, sobbing, shaking.....
I am truely shuddering like a child who has calmed after crying for an hour.
I am filled with joy for you and your family.
Congratulations and Blessings!!!!!

Total 5 comments

We try to limit TV in our house. We really do. I know all the statistics: how too much TV has been linked to obesity and attention problems -- particularly in autistic kids -- and violence in children in general. One of the biggest challenges with autistic kids is getting them out of their own worlds and interacting with people; clearly TV can be an obstacle to that.

We never have adult TV on while the kids are awake. And by "adult TV," I don't mean porn (though you can safely assume that we aren't watching porn with the kids in the room). I'm talking about anything that isn't on Nick Jr. or Disney or PBS Kids. We don't even watch the news with the kids, because with all the news tickers and quick cuts and crazy graphics and split screens, it starts to give me ADD after about 15 minutes.

So, on the advice of our occupational therapist, we try to limit the kids' TV to about 30 minutes a day. The exception is when they're sick and feverish. When Billy feels so rotten that he just wants to watch cartoons, I don't have the heart to tell him no.

He's been sick for almost a month, off and on, and we've watched “Finding Nemo” so many times that it has become an alternative language for us. You can find a line of dialogue in Nemo to fit almost any situation, as it turns out. We had an unsettling couple of days when Billy spoke almost exclusively in “whale,” but luckily, that phased out quickly.

We also now tell time in “Nemos:” a “full Nemo” is a 90-minute block, a “half-Nemo” is 45 minutes, and so on. It takes about a “quarter-Nemo” to get both kids dressed with shoes on.

Now that Billy's feeling better, I have written a script of my own: It's called “Losing Nemo” and it lasts for the rest of our lives.

So we're going to start this week newly healthy and going cold turkey on the TV-watching. Only educational TV and only for 30 minutes a day.

I will say this about TV, though: Billy can learn stuff he sees on a screen about 10 times faster than something he has to hear some other way. He pays attention when it's on a TV or computer screen.

I'm not just talking about memorizing dialog – though he does have a catalog of cartoons in his head that could rival the Netflix kids' section.

I'm talking about learning skills, even motor skills, by watching someone else complete the task: handwriting, bike riding, dancing, etc.

We've been working with a couple of handwriting programs this summer (not too consistently, because of the illness): TV Teacher and Handwriting Without Tears.

The TV Teacher program is based on the idea that certain autistic kids learn very well from video. The host of the program is an occupational therapist, and she noticed that one of her clients, a young boy, improved a lot after his sessions were videotaped and played back. He would watch them over and over. And they taught him shapes and letters this way before creating the DVD series and selling it to other parents.

It's been a big hit with Billy. We've mainly focused on shapes over the past month. As she teaches each shape, “Ms. Marnie” will show how the child can use the shape to draw something fun: a circle becomes a balloon, a triangle becomes a pizza, and a heart becomes a valentine.

A couple of days ago, Billy and I were drawing with crayons on his easel. He asked, “Draw a heart! Draw a heart!,” so I did. Then I walked away, talking to my parents about something.

Then my dad got a funny look on his face, staring at something just over my shoulder. I turned around and saw that Billy had written “Mom” in the center of the heart. It was slightly wonky but completely legible.

My jaw dropped. No one had asked him to write anything. He had never written “mom” before anywhere.

I picked up the paper from the easel and held it out to him, asking, “Billy what does this say?”

He smiled and pointed at each letter: “M-O-M ... MOM!”

I couldn't believe it. I know that he saw it on TV, but it has been almost a month of non-stop Nemo-thon since he's seen that program. And no one prompted him to write anything. I didn't even know he could spell “mom,” much less write it.

So don't tell me that TV is all bad for children. It may not be a popular opinion, but I think video can be a great way for some autistic kids to learn; I don't understand the science behind it, but I think there's something there. The key is picking the right programs and using this tool strategically.

I'd love to hear any of your suggestions about really good educational programming, either online or on TV/DVD. Or do you think exposing kids to any TV is a bad idea? How do you choose the stuff you'll let your kids watch? I'd love to hear opinions!

Reader Comments

Tv

We limit tv too.It's easy to do once you get used to it, especially since we don't have cable or satellite. =) I will agree with you somewhat about some children learning from the tv. My Morgan learned her ABCs from Barney in a couple of days. I had tried to teach her them for MONTHS, and something about what Barney did made sense.
Our favorite programs are Word Girl and Sid the Science Kid. Both awesome for learning and reading.

YouTube and My Sister's Wedding

Don't know if I told you, but my youngest sister in DC became engaged last month and is getting married in late October (actually, it is the same day as our wedding anniversary!). She wants EJ to be her ringbearer and I said yes initially, but of course, after giving it some thought, I am having anxiety attacks over the idea. I have worked out the general plan to get him through a one and half hour high Mass (can you say Grandma's iPhone??), but I am still stressed over the idea of him not really "getting it" when it comes showtime, never mind how in the world are we going to get him to button a top button around his neck and then wear a tie.

We tried a "practice" run yesterday. I gave him a small pillow and then walked about 20 feet away from him; then I said, "OK, bring the pillow to me with a BIG smile!!". Well, he did fine the first time, but by the second time, he had decided that it was MUCH more fun to stop 1/2 way and then THROW the pillow to me. We did this a few more times, but I was afraid the throwing would become reinforced, so we quit.

Enter YouTube. I love YouTube for many reasons, but the main one is that you can always find at least one video of some neurotypical kid doing exactly what you want your kid to do (e.g. using the potty, brushing teeth, using utensils when eating, hitting a baseball, etc.). I thought, "I'll be there is a wedding video out there somewhere that he can watch and model the ringbearer.". I found one that was shot fairly close up of the kid (who had a huge smile on his face), so I showed it to EJ.

He watched it all the way through (about 1 minute) and then asked to watch it again. As the kid in the video started walking down the aisle, I said, "what is he doing?".

EJ: "He is being a ringbearer for Tia Tini and PJ's wedding."

Me: "What is he carrying on the little pillow?"

EJ: "He is carrying the rings."

Me: "Is he smiling?"

EJ: "Yes."

Me: "Why is he smiling?"

EJ: "Because he is about to throw the pillow."



MOM -- awesome!

Hey Sis, it's nice to know Billy has you in his heart!

By the way, JD in TLH, the pillow story is awesome, too. I needed a chuckle this afternoon and you provided it!

From Amanda Broadfoot

Oh man, that pillow story made me laugh so hard I fell off that couch! So great!

We do the same thing with YouTube -- finding neurotypical kids to model -- because Billy does seem to pay attention so much more to video. But he always surprises me by what will stick with him. It's not always what I have in mind.

Good luck with the wedding. Dave's brother had asked Billy to be ringbearer at his wedding and we were too chicken to try. Of course, that also required a transatlantic flight -- something we haven't tried with Billy since he was two.

Can't wait to see you guys again. We're just done with a bout of viral pink-eye so we're almost ready for public exposure again!

mom <3

Wow that's incredible. and the "losing nemo" line -- lol.

we try to limit tv too but I can't help but think that it can be beneficial in small doses.

From Amanda Broadfoot

Absolutely agree with you. My hat's off to those moms who firmly adhere to a strict "NO TV AT ALL" rule for their kids. However, I need a few minutes to take a shower sometimes, and I don't think a few minutes of Mickey Mouse Clubhouse is going to screw them up too badly :-)

Total 6 comments

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