Showing posts with label Special Needs. Show all posts
Showing posts with label Special Needs. Show all posts

Sunday, March 18, 2012

An Interesting Discovery - Prenatal Nutritional Deprivation

A few weeks ago, Lee and I were speaking at an adoption agency about adopting special needs kids – something we do several times a year with another couple who focuses on transracial adoption. We’ve been co-speaking with our friends, Kiara and Andy, for several years now and we’ve built up a special bond with them as we’ve both embarked on our adoptive journeys. They’ve really helped us understand some of the transracial adoption issues we have unexpectedly experienced with Cody and we’ve helped them along in their unexpected special needs journey. Every time we get together to present, I notice that we take new little nuggets of wisdom and insight home with us.

This last time, Kiara was talking about some struggles one of her kiddos has with hunger and behaviors and Lee and I couldn’t help but notice that they were very much the same issues that we’ve had with Cody and food ever since we brought him home. Near panic attacks whenever he feels hungry, lashing out and saying things like “you never feed me” or “I’m going to die!” and becoming aggressive and extremely irritable are just a few of the particular things we noted as being very familiar. Kiara mentioned that one of their nutritionists had suggested Prenatal Nutritional Deprivation might be to blame, so I made a mental note to check this out as soon as I got home. 

The next morning, I quickly Googled it and was blown away. Every article I could find on it pointed to a link between it and schizophrenia. We knew that schizophrenia was bio family factor so my attention was definitely peaked. I made a few phone calls and got a hold of an old family friend who is a leading researcher in the field of schizophrenia and the biological aspects of it and was assured that yes, this is a real thing. I was also given some very helpful information and advice. What they are finding in many of these kids that have these behaviors because of being nutritionally deprived in the womb (due to many factors), is that they have a constant deficiency of choline and omega three fatty acids. Choline is an essential nutrient found most readily in meat and eggs. Our family friend suggested that we try to keep Cody on a well-balanced diet high in protein and fat, as this would more likely get the needed amounts of choline into Cody’s system the most regularly. He suggested trying to get meat into his system at least twice a day, if possible.  We also needed to either get Cody eating salmon a couple of times a week or get him supplements for the omega three fatty acids.

That week we started making sure that Cody got meat in some form with his breakfast, to start the day off with a more balanced meal in his system. Every morning for the last couple of weeks, we have given him an omega three fatty acid supplement (we all take the Mega Red supplement) and we have had him eat one or two sausage patties with his breakfast (our friend assured us that the meat does NOT have to be organic or high quality to be effective), and we have actually seen a big difference. His moods are more stable, especially in the morning, and we are having less emotional melt downs the rest of the day when he gets his meat. It hasn’t been an easy adjustment for Cody, who craves carbs like crazy and prefers waffles with Nutella and/or peanut butter for breakfast, but he’s managed to stick with it and for the most part cooperates willingly.  He seems to be sleeping better as well.

Our family friend also cautioned us about head injuries, as it seems that people who have high risk factors for serious mental illnesses seem to develop them more often after head injuries. Just something to take note of.

So we just wanted to share that information with any of you who might find that helpful. Not that it applies to EVERYONE exhibiting these behaviors, but just in case it might be a possibility. We’d never heard of it at all before now.

Sunday, January 15, 2012

The Journey Into Never Ever Land, part one


Someday I’m going to learn to stop saying “Never. No way. Nuh-uh. Absolutely not.” I’ll realize that I send out some sort of cosmic red flag, the proverbial matador cape or signal flare to the fates that says “Okay, she’s ready! Send it on in!” I can see God up there, watching me and hearing me utter my denials and bowing his head and shaking it, probably much like my husband does when I do something really stupid. He probably chuckles like Lee does, too. :)

Once again I find myself at that place where I am doing the very thing I vowed I would never, ever do. I’ve been here before. I would never work at a church. I wasn’t going to have kids. I wasn’t EVER going to have two boys. No freaking way would I EVER be a stay-home mom. Absolutely impossible to believe I would even LIKE it. :)

And I would have SWORN that pigs would fly before I would EVER consider schooling a child of mine from home. 

EVER.

Yeah, folks, better be checking your bacon for feathers because it’s happening. :)

How did this happen, you ask? Ha ha ha Let me tell you…

First, I just want to note that I am writing from my own perspective here, using “I” instead of “we” not because Lee and I as parents are not in agreement, but because I want it to be clear that I am speaking for myself alone. Thankfully, Lee and I share the same perspective here, so technically I could just say “we” but it just feels kind of presumptive. 

Secondly, I want to make sure that it is CLEARLY understood that I do NOT hate the public school system or its teachers. FAR FROM IT.

I am not an angry parent who hates the public school system and teachers. In fact, I have several friends who are teachers in the public school system and I admire them profoundly. I believe that they – along with firemen, policemen and other public servicemen - are tragically overlooked, undervalued, and oftentimes vastly underpaid heroes. These people make a living out of putting other people first and they too often get the last of our resources, our attention, our respect and our thanks. (I could go on and on about this, but I will save my soapbox for another blog and move on to the issue at hand.) Today’s public school teachers are dealing with issues and conditions that most of us don’t even realize. For most of them, resources and funding are dropping out from under them but their class sizes are rapidly increasing. More and more of their students are struggling with various disorders and are in desperate need of more help than the teachers can give. 

Teachers are also being asked to add more and more non-classroom tasks to their already full schedules - such as IEPs, 504s, special trainings, etc. We are giving these individuals more to do with far less resources and they are struggling and being hung out to dry when they don’t perform up to the standards that we believe that they should be. Really? Do ANY of us perform well when we’re stressed out, tired and don’t have the basics that we need? As a parent, I know I am at my worst when my kids are acting out and I’m tired, need to get a million things done and don’t have the time or the resources I need to get them done. And teachers are doing it with far more kids than the two I have. Every day. 

So no, I do NOT hate public school teachers. I applaud them. I understand that the public school system is struggling and some of that is its own fault and some of it is the economic situation, etc. Even though it struggles and is an imperfect system, I still believe that public schools provide an invaluable service to millions of children. 

Now on to why we have made this particular decision for our particular child at this particular time.

Most of our family and friends know that our boys are two amazing dudes. And most of you also know that they each have some particular struggles that trip them up from time to time. These are struggles that may very likely be life long, so one of our goals as a family is to help them learn to navigate the world using their particular strengths and develop skills and strategies to help compensate for the particular struggles that they face. We use several approaches for both boys to accomplish these goals. 

Some of the things that Shaun struggles with are sitting still, staying focused, curbing impulsivity, and staying organized. The flip side to those struggles is that he is full of energy, ready to go, creative, funny, an out-of-the-box thinker, and never boring. In some situations – like an overcrowded classroom with a lot of other kids like him who are being asked to sit still, listen and learn – the combination of his strengths and struggles can be toxic to him and those around him. These are the times when he can be his own worst enemy. We have employed a variety of approaches to help him with these issues:  sensory strategies, reward systems, redirection, gentle reminders, not so gentle reminders, and medication (another never-ever issue). It requires a concerted effort with very clear expectations on the parts of EVERYONE involved and A LOT of follow up, follow through and regular communication.

Shaun also struggles with anxiety. It has plagued him on and off since he was young. Most of the time you would look at our bold and daredevil son and say, “Seriously? He has ANXIETY issues? NO WAY.” But anxiety doesn’t always look like the scared child sitting in the corner, cowering and afraid of his own shadow. Anxiety can be loud and aggressive; lashing out at the people you love the most. Anxiety can be twitchy and nervous or even sullen and sulky. Anxiety has a lot of faces and we have seen them all with Shaun. When his anxiety levels are up, he becomes moody, mean, clingy, antagonistic, loud, sullen, angry, withdrawn… you name it. We’ve seen it. He also gets twitchy and will rub his nose constantly, often developing sores that are painful and huge. We have learned to look for these when behaviors increase as a possible sign that it’s anxiety rearing its ugly head again. (Though sometimes it is just puberty or lack of hygiene. :) )

Knowing these things, we entered the junior high arena with some trepidation but still hopeful. Foremost on our minds was that we were no longer interfacing with only one or two teachers; now we were dealing with seven or more. In previous years, we’d been blessed with amazing teachers who had been able to bring out the best in Shaun through tapping in to his strengths and unique interests as they spent time with him and got to know him. Now, he would be with seven or more different people every day, with 30-40 other kids at the same time. We knew that this would be a difficult hurdle for Shaun but we didn’t believe it would be impossible. We also knew that the coursework and assignments in junior high would dramatically increase from what he was used to and that this would also be a hurdle for him, but again, did not think it would be impossible. 

The first quarter of the semester, Shaun loved the social part of being with so many of his friends, and he loved being able to move around from classroom to classroom throughout the day. He loved the electives and the opportunity to learn about more than just the usual math and English, etc. He loved the variety of what he was learning. But he began to struggle with the amount and speed of what was being thrown at him – more than any of us realized – and he got overwhelmed. We noticed right off that he was having a difficult time keeping up with taking notes. He has very poor handwriting and for him to write neatly, he has to go very slow and concentrate. In order for him to keep up with the teacher, he had to write fast. That meant he couldn’t read his notes. Thankfully, his IEP and the fact that he had amazing teachers enabled him to get fill in the blank notes so that he could still take notes but also get all the information he needed. That solution helped some. Unfortunately, we didn’t discover that this had been an issue soon enough. 

In his efforts to try to stay on top of things – or at least give the appearance of staying on top of things – Shaun began to let things slide and would put them off until later but would never actually get around to doing them. Although he is a master strategist (play chess with the kid and he’ll beat the pants off you), figuring out a plan for his day is mind boggling. Although he can manage to build an entire civilization in a computer game (where you will note that structure is already provided for him), breaking down a homework assignment into workable pieces is overwhelming. 

The thing is, the kid is brilliant and he KNOWS he should be able to do these simple things. He sees that it’s “just” a homework assignment or what have you, but he doesn’t know how to start it. All he sees is the giant wall in front of him and no way to climb it. He just knows he has to get over the damn thing and everyone is on him to get it done NOW. Imagine yourself in that situation. You see the wall. You know you HAVE to get over it and you SHOULD be able to get over it. And you have everyone around you saying “come on, already, get over the wall” but you can’t find a way to do that, and man, that wall is HUGE. Would you feel a little anxiety there? Now imagine that you’ve faced this situation over and over and over again and every time you hit the wall, those people around you get more and more impatient, angry, loud and demanding. They tell you that you are not climbing that wall on purpose. You might start to get a little jumpy every time you see a wall. In fact, you might get a little crazy about them. You might start having panic attacks when you saw them. Or you might just shut down and walk away and avoid walls all together.

I think Shaun thought he could coast through on his charm and charisma but he got further and further behind, deeper and deeper into an abyss and began to basically disintegrate. He was at a massive wall and he had seven teachers, two parents and a host of other peoples all breathing down his neck to get it over it. What we saw was a moody, defiant, irresponsible, lazy, manipulative, frustrated child whom most of us thought just needed to buckle down and get his nose to the grindstone and he’d be fine. What was happening was that Shaun was standing in front of this massive wall, much of it of his own making and he knew it. He was frustrated, ashamed, scared and had given up and no one was listening. In fact, we were all just yelling at him. All the time. 

I was on the phone with or emailing with most of his teachers at least once or twice a week, trying to keep tabs on what he needed to do and turn in because getting information out of him was impossible and assignments and projects were forever getting “lost” between school and home. We took away privileges, we tried everything we could. Nothing helped. We got more frustrated and angry and frankly, incredibly anxious ourselves. Peace in our household dissolved like snow in Phoenix in the summer.

During the second quarter, under threat of permanent misery at home, Shaun started off well and wanted to do better and stay on task. He realized that if he failed that quarter, he would have to repeat classes over the summer or next year which he did NOT want to do. So he tried. But there was still enough gray area around him that he was still able to work the system and do as little as possible to get by. It didn’t work for him. He continued to not turn stuff in, not do his work in class, bomb tests, etc. I think he never believed he could do it all so he never tried. We talked with his teachers. We made contracts. But he continued to struggle academically. And we watched as he become more deceptive, more moody, more withdrawn, more anxious and no longer cared about any of it. We had him tested for drugs. (Negative.) We changed his meds.  

And nothing improved.

As Christmas break approached, Lee and I began to sit and really talk about how much our family was just disintegrating. We were all tired of the fights, the yelling, and the constant conflict. We were both deeply concerned about the direction his character was going. We no longer felt like we knew our son. We couldn’t believe anything he said. 

We prayed. A lot. And cried. And sweated. And began to realize that we as a family needed to make changes. We needed to CALM things down in our home and refocus on the things that were most important to us as a family – God, love and family. Yes, our son was struggling academically. Yes, our son was overwhelmed. Yes, our son’s character and integrity were disintegrating. But he was still OUR SON. And we, as his family, had to DO something about it. 

About this time, Shaun had a couple of episodes where he had chest pain and couldn’t breathe. At first, I thought he was just being dramatic and seeking attention. But he kept having them and I saw him trying to deal with them on his own at home, without trying to draw my attention to them. I casually asked him about them and found out he’d had them at school, too. So we had an EKG done to make sure it wasn’t from his medications, which it apparently wasn’t. I also noticed that the sores on his face were getting worse.

I found myself with a 12 year old having panic attacks and realized that it wasn’t about just increasing his meds to take care of it. We needed to deal with what was CAUSING the anxiety to skyrocket out of control. And that was easy enough to answer. 

School.


(Stay tuned for part two of The Journey Into Never Ever Land...)

Wednesday, August 18, 2010

Sleepless in Phoenix

Well folks... Cody is on day... ten? twelve? Fourteen? (I'm not actually sure) of an insomnia bender.

He goes to bed at 8.

He sleeps for an hour or so.

He wakes up thinking he hasn't slept.

He freaks out that he hasn't slept.

He comes running out into the living room, frantic and screaming at us that he's not sleeping. He thinks we're lying to him that he has, in fact, been asleep.

He wants water, tea, crackers, medicine, backrubs, pressure massage, beanbags, blankets, books, vidoes, music... anything that he thinks might put him to sleep.

None of which actually work. It's all stuck in his head now and it's the very suggestion that he MIGHT not be able to sleep that is eating at him. It starts the minute he walks in from school. Nothing distracts him from it. Nothing redirects his obsessive thoughts away from it. It just keeps happening and we are at a loss to break the cycle. Is it the obsessiveness of the autism biting him in the butt? Is it the sleeplessness of the bipolar playing in? Is it just an anxious 8 year old stuck in an ugly cycle? Is he eating something that is messing with his sleep cycle? A side effect of his meds? AHHHHHH!!! I don't know.

Over and over again, night after night, he wakes up and gets more and more frantic about not being able to sleep. He's angry, demanding, anxious and LOUD.

We're tired, concerned, frustrated, baffled and - yeah - a little annoyed.

"Go to bed."

"Go to bed."

"Go to bed."

"Go to bed."

"Go to bed."

"Go to bed."

"Go back to bed."

"Go back to bed."

"Go back to bed."

"Go back to bed."

"Go back to bed."

"Go back to bed."


It's. All. Night.

Anyone got any ideas?

Wednesday, July 21, 2010

Echolalia

Yesterday, I learned that there is an actual name for the thing that makes me want to run screaming from my 8yo autistic son...

Echolalia. :)


Definition: repetition of a word or phrase. Some autistic people and people with Asperger syndrome may use repetition as a method of allowing themselves more time to process language. A typical pediatric presentation of echolalia might be: a child is asked, "Do you want dinner?" the child echoes back "Do you want dinner?" followed by a pause and then a response, "Yes. What's for dinner?" In delayed echolalia, a phrase is repeated after a delay, such as a person with autism who repeats TV commercials, favorite movie scripts, or parental reprimands.


So by my best guess, I would be experiencing Post-traumatic Echolalia Syndrome. Or perhaps Anti-echolalia. Or Echolaliaphobia. Something like that. :)