Dec 12

Holy MTHFR!

surprise1If I say MTHFR, then Methylenetetrahydrofolate Reductase are the two words that pop into your brain, right? No? Well, hopefully after reading this, you’ll see more than that swear word that caught your attention.

If I next mention bipolar struggles, rapid mood swings, depression, anxiety, heart disease, strokes, macular degeneration, miscarriages – and any of these issues hit home for you, then read on, because you might just want to know about MethyleneTetraHydroFolate Reductase – better known by its abbreviation – MTHFR.

MTHFR is a gene and like all genes, it acts as a light switch – turning on or turning off various body processes. In this case, MTHFR takes folate (vitamin B9) and methylates (converts) it into methylfolate (5-methylTHF). Hardly seems like a big deal, does it? Yet, if you belong to an autism, Pandas, Lyme or chronic fatigue group, you’ve probably noticed a big buzz around this thing called methylation. While the past decade has seen MTHFR studied in terms of cardiovascular disease and cancer, it turns out it might also be a very big deal for those raising kids with developmental, neurological or behavioral symptoms and for those fighting chronic infections.

Methylwhat?

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Oct 22

Guest post: The ODD Mom gives us 8 Tips for Surviving your Child’s ADHD without Losing your Mind or your Sense of Humour

This week is ADHD Awareness Week, which seems an appropriate time to share my thoughts on surviving your child’s ADHD. Granted, Bear is only 7 and we have a long way to go, but I think these tips can help no matter where you are in the journey. (For the record, I started this post days ago, but my own ADHD kind of got in the way and I ended up doing 23 other things instead.)

If you have a child with ADHD, then you know that there are days where you would not only happily sell your child to the highest bidder but might even be enticed to giving them away for free.

When Bear was first diagnosed, it was a relief. This wasn’t our fault. We weren’t bad parents. We weren’t to blame. There was something bigger than us at work here, and now we had to figure out what to do about it.

My instinct has always been to approach things with a sense of humour. If I can’t make it go away, I may as well have a little fun with it. It’s how I cope. Now that’s not to say I don’t allow myself to wallow every now and then or that I don’t take things seriously. I do, but my slightly warped sense of humour allows me to find the funny in some of the stuff we deal with. Thank God, cause we’ve dealt with a lot and while things are going really well right now, I know we have a lot of new challenges ahead of us.

So, how do you survive in the face of your child’s ADHD?

To read the rest, go to The ODD Mom blog itself!

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Oct 03

Guest Post: Mom’s Income / The Real Cost of Childhood Special Needs

Laura Weeds Wright’s blog is The ODD Mom. Here’s what she says about herself: “I deal with more parenting challenges in a week than most parents probably deal with in a year. I’m an ODD mother — the mother of a child with Oppositional Defiant Disorder. I’d love to say this doesn’t define me, but something that consumes your every waking hour can’t help but define you. So rather than hanging my head in shame, I’ve decided to wear the label like a badge of honour. Come with me…it’s an ODD life I live.” This blog post was first posted on her blog in April, 2012.

As I sit here in the middle of the afternoon, chaos reigns around me. On the table beside me sits a stack of bills that I’m trying to juggle payment on — I have to decide which ones need to be paid now and which ones can wait until next payday. In the living room Stitch is playing, happily throwing blocks around and laughing madly as they bounce off the furniture. Down the hall Bear, who should actually be at school right now, is playing his Leapster, the fact that it’s an “educational” game allowing me to fool myself into believing it can be classed as ”work.”

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May 21

Feeling Bitter and Taken for Granted. GRRRR!

Man oh MAN I’m in a foul mood right now. Angry. Sad. Bitter. And jealous. Here’s what happened that brought it all to the front. Not really THE REASON, but the trigger, if that makes any sense.

This morning I took Little J to his school’s speech therapist’s house for a 2-week intensive therapy session she’s doing with him and another child. He goes to an independent school for kids with special needs and we are really lucky that they are able to think outside the box and do things like this with him and the other kids when it’s possible. He’s there to be company for the other child, to be observed outside the setting of school, and to do focused listening therapy in the hopes that it will tell us something about his auditory processing issues.

I am all for this experiment, but I’ve quit holding my breath in the hopes that this – or any other therapies or medicines or treatments – will have any real, positive effect on him. FASD, or fetal alcohol spectrum disorder, is brain damage caused by alcohol exposure in utero.

Brain damage is brain damage is brain damage. Which doesn’t mean he can’t learn, but that his learning is limited. Slower. If the corpus callosum, the area of the brain that takes messages back and forth between the 2 halves, is small or even nonexistent, and the front lobes aren’t fully formed, which is what we suspect is going on with J based on his medical history and behaviors, there’s no documented treatment that can regrow or re-form those portions of the brain.

So when the speech therapist talks about ‘building new neural pathways’ in a brain that has serious, serious deficits, especially using techniques that have no research in connection with FASD (which isn’t saying much, honestly, since so little has been studied about therapies for people with FASD), I smile and nod, but I’m no longer hopeful. I’ve come to the bitter part of acceptance of my son’s disabilities. The part that most parents of kids with special needs don’t talk about. The part that’s tinged with grief.

So now you know my frame of mind, here was how this morning went down. I got up at 6 so I could make breakfasts and get everyone cleaned up and out of the house for 7:15. When J wakes up he is grumpy and rude, and I was called “bitch” and “idiot” and screamed at a couple of times for telling him to wipe milk off his face and to find his socks.  In between screaming at me he stops, smiles, and runs face-first into my body, saying “hugs.” When he does this sort of thing I find it really hard to reciprocate. At this point in my morning I am just trying to survive. Physical affection towards someone who has been, frankly, verbally abusive, is not top on my list.

While getting him and his brother ready I also had to watch the dogs – J has been bothering them recently. Not in a sadistic way, but in a ‘I’m stronger and bigger than you and I’m going to haul you around and tie you up’ kind of way, if that makes any sense. I really, really, really don’t like it when he does this to our dogs and I’m always on edge when he and the dogs are in the same space. And before you tell me to change the spaces they’re in, please realize that sometimes I have to do things like put on clothes and use the toilet, and the child is perfectly capable of letting himself outside so he can chase the dogs around the yard.

Anyway, we all get in the car, I drop J’s brother off, and J and I head to the therapist’s house, which is 50 minutes away. About half-way through his Kindle stops working and he starts smashing it against various surfaces, screaming swears, and making random nonsense noises. And then we hit traffic. And then I really, really, really start to need to pee. Really, really badly. Plus, I haven’t had breakfast and I can feel my blood sugar tanking. I have some hypoglycemia/blood sugar (probably stress-related) health issues that I’ve not been exactly ignoring lately, but I certainly haven’t been paying very good attention to. Suffice it to say I am not feeling great for the last 15 minutes of the drive.

When we arrive at the therapist’s house it’s all I can do to get out of the car without peeing on myself. I mumble hello-where’s-the-bathroom and stumble inside.

When I come out, much relieved, J is smiling and happy. The speech therapist is smiling and happy and uber calm. They talk about doing chores (which J has to be FORCED to do at home) and taking a little walk (again, a FORCED activity at home) and when she asks if she can give J a little snack of salmon or turkey in a while I can’t help it. I blurt, sarcastically, “Good luck!” Because if I were to suggest a snack like that at home it would not go over well. (Which, incidentally, is why J did not eat lunch or dinner the day before – he simply didn’t like it).

But I bet you a million dollars he eats that turkey or salmon. And I bet you a million dollars he will tell her he likes it. And I bet he feeds that dog and takes that walk and is sweet and kind and has a decent conversation with her, the kind I NEVER get out of him, because he’s too busy telling me how mean I am.

So that’s where I am this morning. Bitter. Taken for granted. And super jealous of his speech therapist, who’s getting to experience my boy in a way I never get to.

 

(image by flickr user Lucia through Creative Commons license)

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Feb 14

An (un)Happy Valentine’s Day morning

When I signed up to write a Valentine’s Day blog post on this blog, I truly intended it to be a list of all the ways I love my little bundle of joy. Seriously. There is a lot to love, but because of this morning I am not feeling it.

I’m not feeling love. At all. Just tolerance. And only because he’s my child. If he were not my child, if he were a boyfriend or a friend or even someone I was married to or another family member then this relationship would have ended a long time ago.

I know that sounds pretty shocking. I’m kind of shocked writing it. But it’s the truth. Because my child has brain damage due to in-utero alcohol abuse by his birth mother, and because he experience trauma before he came to me, he has some problems with attachment. Not full-blown Reactive Attachment Disorder. Maybe half-blown Reactive Attachment Disorder. Because most of the time he can be a part of our family to the best of his ability, given that he does have significant brain damage and social skills problems and impulsivity and a mood disorder. But sometimes he can’t. Most mornings he can’t. And this morning, oh, THIS MORNING, this VALENTINE’S DAY MORNING, he really, really, really couldn’t.

Here’s how it went down. Continue reading

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Feb 14

Hey girl. This one’s for all you parents of kids with attachment disorder.

I had kind of a difficult morning. I’m going to write a real blog post in a minute, but in the meantime I made myself a Hey Girl to cheer myself up.

This one goes out to all you mothers of children with attachment disorder, be it full-blown RAD, mild attachment issues, or anywhere in between. Love you. Take care of yourselves today.

Hey girl for parents of children with attachment disorders

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Oct 20

It finally happened…

For all of Lucais’ life, he has kept his rage and defiance in tact except for when we are together.  Doctors, teachers and even some therapists questioned my insistance that he was a difficult child in anyway.  He always recieved straight A’s and almost always showed compassion for people and animals, with the exception of his siblings, his father and I.  With us, he would kick, scream and punch, telling us how much he hated us and insisting that we didn’t love him.  At the age of 5 he told me one day that he wished he was dead.

I feared for the day when it left the household and he acted out in school, but I was grateful when he showed defiance to his therapist.  At last someone saw the side of my child that I saw.  I know it is a horrible thing to hope that your child misbehaves, but no one would believe me.  I went to the school the year he started kindergarten and asked for an IEP.  I was then told they would have to do the testing.  I agreed, certain that if a psychiatrist had diagnosed him, they could not ignore the findings and at least there would be something in place if he ever did act out.  I was horrified when they came back and informed that not only did they not see a need for an IEP, they weren’t even going to give us a 504 for medical reasons.  They managed to avoid me at all costs.

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Apr 29

What ADHD Has Taught Me: The Good, the Bad, and the Ugly

 
 
Hurricane

Hurricane Kid

In previous posts, I’ve characterized Mason as my little hurricane. Recent blog themes on acceptance made me realize that, sometimes, hurricanes are needed.  In my case, I needed a hurricane to clear many layers of emotional debris that kept me from being available to truly love others, warts and all.

 Here’s some of what I have learned thus far.

 

The Good

Listen more, talk less.

Give one direction at a time then, wait.

Engage in conversations; ignore arguments.

I know my child better than anyone else does. Don’t ignore your instincts; instead, keep asking questions of doctors, teachers, therapists, other parents — anyone who may have insight into your child’s world.

“Boys will be boys” is not an explanation for ADHD, oppositional behavior, sensory integration disorder or any other a-typical category. 

Control less: no amount of organizational equipment (boxes, tubs, etc.) can contain his belongings or his apparent need to scatter them all over his bedroom.

Erratic chores? Leave the room while he clears one dish at a time. At least he’s doing it!

Delegate: let dad help pack allergy-free food for outings and long road trips; let Mason be responsible for carrying his EpiPen everywhere he goes.

Let go: allow Mason to go to a party without a parent supervising his food and behavior. (Well, … maybe sometimes.)

Expect chaos, impulsive behavior.

Accept my limitations: physical and emotional.

Lots of homework doesn’t necessarily mean lots of learning.

More compassion for those who don’t “fit the mold.”

Casual readers can be good people. Raising a good person would be a great thing.

The Bad

I talk too fast, use “too many words.”

For some, organizational skills are inherent; for others, some, not all, can be taught.

Give educators and doctors lots of paper so they’ll take you seriously and provide services.

ADHD gets you services; other learning disabilities such as Central Auditory Processing (CAPD) do not. Document those that will get your child the help they need. Then, ask for help with the unrecognized disabilities.

“Proficient” is a sanitized way to describe a below average student.

 Behavior modification systems are really tools to distract already storm-swept parents, and are usually “make work” programs for mom.

The Ugly

My faith is not as strong as I thought. Can I trust that He will take care of both of my children? Especially the one who may not be able to care for himself?

I’m angry, depressed, selfish, controlling and critical. These qualities do not help any of us.

Final Lessons

Well, luckily the good outweighs the bad and the ugly. Parenting this Easy to Love, but Hard to Raise child is like chasing a pendulum in constant motion. A good day is when you hit the moving target — guessing the right strategy for the moment. Miss, and it can be a downward spiral that leaves you bewildered, wondering where in the universe did that (response, behavior, problem) come from?

It’s a process, as they say. I can finally see, love, and accept the person behind all of the diagnoses: a sweet, sensitive, interesting little boy with a slightly off-center view of the world. Thank you, Hurricane.

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Apr 27

Oppositional

noMy child has a default setting, and it is NO.

I have several  theories as to why this is.

  1. He is highly impulsive and so says the first thing on his mind. The first thing on his mind is, apparently, NO.
  2. He is fearful and anxious about new things, and this expresses itself by a rejection of new things, leading to NO.
  3. He’s learned to be defensive, probably due to problems processing information, which leads him to say NO to most requests.
  4. When he’s confused (see above processing problem) and hasn’t understood the request or question, he will also say NO.
  5. He’s also immature socially and developmentally delayed, so while many children outgrow the NO at age 4 or so, he’s really not there yet.
  6. Finally, he has learned that in our house, NO gets way more attention than YES, so when he’s feeling particularly needy he says NO, and says it a lot. Often when he’s feeling that way he combines it with name-calling, the phrase, “You are mean,” and sometimes crying and tantruming and throwing things other lovely behaviors that communicate how he’s feeling in the most unpleasant way possible.

Saying NO started when he first began to talk, around 3 (notice that he was a late-talker, which lead to more frustration, which lead to more NOs) and although we’ve had ups and downs over the past couple of years in terms of the level and intensity of his opposition, it’s pretty much continued unabated until now. He’s 8, 9 in 2 months.

What hasn’t continued unabated has been our response to these NOs. At first we went with the flow. After all, saying NO is very normal behavior for toddlers and pre-schoolers, as are tantrums and screaming.

I really wish I could say that all along I believed in my child and knew there was more going on than him simply being “bad,” but this wasn’t the case.

Our next tactic was to be frustrated, to say NO back, to punish, to give consequences, to be angry and sad and frustrated…and we did this for several years. A very LONG several years. It didn’t work. It probably made it worse (see the #6  above about NOs getting more attention than YESes). It certainly didn’t make it better. The harder we pushed the harder he fought. Go figure!

Eventually we (and when I say “we” I really mean “I,” because for better or for worse Mama drives the child-rearing practices in our house) came to a place where we started to realize that there was more to the NOs than him simply being a super-brat. I really wish I could say that all along I believed in my child and knew there was more going on than him simply being “bad,” but this wasn’t the case. It’s only been a recent (like in the past year) development that I’m realizing he truly, truly can’t help this behavior (see theories  #1-5, above.)

But even though I realized his behavior was beyond his control, that the NOs were not on purpose, that if I waited a beat – 2 seconds or so – he would tell me what he really meant and thought – I STILL handled it wrong.

I talked. I talked and I talked and I talked. I talked to him about trust, and how he needed to mean what he said, and how people wouldn’t like him if he was so negative and how hard it was for Daddy and I and his brother to know what he meant if he didn’t say what he meant from the get-go, and blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah.

I’m sure I sounded like the teacher in Peanuts. Because it did about as much good as that teacher does. Wah wah wah wah wah.

It took me about a year to realize that although getting away from punishing him for saying NO was a good thing (and actually resulted in less NOs, believe it or not), talking about it, trying to be logical and providing reasons for why he wasn’t being an effective communicator by saying NO all the time, didn’t work. Not really. I mean, he heard what I said sometimes, and if you ask him in a calm moment how he’s supposed to ask he can tell you, but it didn’t really translate into the behavior we wanted.

That said, here’s what HAS worked. Finally:

  • Giving him the benefit of the doubt. When he says NO, we wait. We (try not to) assume that he truly means NO when he says NO. We actually assume otherwise. We ask a second time. We get clarification. We ask a 3rd time. We make sure that NO means NO. Most of the time it doesn’t.
  • Taking him out of uncontrolled social situations. For us this included school. He was too overwhelmed with the other children, the social and academic expectations that he couldn’t meet, and the constant frustration and disappointment he felt when comparing himself (or when others were comparing him) to others. He is less overwhelmed and we can concentrate on what really matters now.
  • Stop talking so much about how to act. He knows how to act. Now we need to give him space and an atmosphere where he can put what he knows into action.
  • Waiting for him to grow up. I’m not taking credit for that. His behavior/developmental level took a leap. It would have done so no matter what we did. I think this is the biggest thing that happened.

Now, my boy still says NO a lot. But he says it a lot less. And I’m willing to bet that as the years go by he will say it even less than now.

I’m not sure he’ll ever be a glass-half-full kind of guy, but at least he won’t break the glass before he’s even tried the water.

 

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