Apr 30

Repost: Detachment Parenting, or Confessions of a ROBOT mama.

I first wrote this post 3 years ago. My son had been newly diagnosed with fetal alcohol spectrum disorder (FASD) and I knew enough about him and enough about FASD to know that his behaviors weren’t completely under his control, and that the best thing I could do was not to respond. Since I wrote this I’ve learned a great deal more about FASD, and am an FASD educator. I’m happy to say that by using the 2 strategies I explain in this post, as well as providing accommodations and environmental change for my son, much of these behaviors have diminished. He’s also 3 years older, and as John Holt said (a rough paraphrase) in one of his wonderful books about homeschooling: ‘Never let anyone else take credit for a child’s development that occurs simply because the child is getting older in the world.’

lady_robotI have something to admit: sometimes the very best tool I have a parent is my ability to detach. Or at least pretend to detach, which is just as good when it comes to managing my easy-to-love-but-hard-to-raise child, but which isn’t particularly healthy for me: stuffing and stifling one’s feelings is not generally thought of the most emotionally healthy activity, you know.

What I mean by detaching is this: if my child screams, swears, or throws stuff at me, tantrums on the floor, demands x,y, or z,, perseverates, says “what do you mean?” over and over and over again in response to simple statements, runs from me when I’m speaking, interrupts while I’m having a conversation with someone else, talks nonsense when my husband and older son and I are conversing at dinner, destroys his toys, destroys other people’s toys, takes things that don’t belong to him…I do my utmost to remain calm. All of these behaviors are related to the brain damage he experienced as the result of fetal alcohol spectrum disorder. None of them are on purpose. All of them are a response to his needs not being met…and all of them are profoundly difficult to deal with.

I have two basic strategies for managing these types of outbursts: Continue reading

Dec 01

Oppositional

 

oppositional-girlThis is a re-write of a post I first published on this blog about 2 1/2 years ago. At the time I was just starting to understand fetal alcohol spectrum disorder (FASD) and what it really meant for my son and my family. 

The first time I wrote this I was coming to an understanding of what “NO” meant when my child said it. I had started to see that it wasn’t simple opposition. I still saw it as him trying to get negative attention, which isn’t my current interpretation of his behaviors. At the point I wrote the original post I was starting to understand what actually worked for my child, but I was still missing the WHYs: at that time I didn’t have a very complete understanding of his brain differences and how the NOs fit into all of that. I’ve updated this post to reflect my new understanding of FASD, my child, and the primary and secondary characteristics of FASD.

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

If I didn’t know better, I’d say he had ODD, or oppositional defiance disorder. Many experts – psychiatrists, psychologists, therapists, and others – have suggested he has ODD in the past. He certainly has all the characteristics – but in reality he has FASD, fetal alcohol spectrum disorder. What looks like ODD is a result of chronic frustration from living in a world that expects “typical” behaviors from an atypical brain. Saying NO is what he does when confronted with people expecting more from him than he can actually do. Being angry and sad and frustrated are actually normal responses to chronic misunderstanding. So labeling him with ODD is not very useful as it doesn’t lend understanding. It simply describes behaviors. It doesn’t look at the WHYs, and I’m not sure that it looks at the WHAT-TO-DOs. In my experience, understanding the WHYs is what drives the WHAT-TO-DOs.

So here are the WHYs:

When I, and other people who train about FASD and the brain, talk about FASD we often split up the behavioral symptoms of brain dysfunction into 3 different groups. This is based on research done by Ann Streissguth and others, and described by Diane Malbin, my mentor and trainer.

First are the primary characteristics of FASD. These are directly related to brain differences and although they vary from person to person, they include slow processing, problems with memory, sensory differences, impulsivity, developmental lags, or dysmaturity, difficulty with language and communication, poor executive functioning, and difficulty with abstract thought. Each of these brain functions show themselves behaviorally. The person with slow processing may not be able to answer questions quickly, which might look like the person is ignoring the question, or ‘not listening.’ The person who is dysmature and who has language difficulties may be able to superfically engage in conversation at his/her chronological age (due to mimicking or good expressive language skills), but may have little understanding of the content of the conversation, leading others to believe he/she is “getting it” when they are not. Later, when the person with FASD is supposed to remember the conversation or apply what he or she has learned and cannot, it is interpreted as deliberate and willful disobedience.

We help the person with FASD by understanding brain differences, accommodating their very real physical disability (because the brain is part of the body, right?), and structuring their environment for success – just as we do for any other physical disability. We quit assigning motive for what they cannot do. We give them the benefit of the doubt.

Secondary characteristics – like what looks like ODD – are behaviors that result when primary characteristics are misunderstood as being on purpose, intentional, or manipulative. If a person’s needs aren’t met, that person gets frustrated, angry, and shuts down. If this happens time and time again, and if that person is punished for things he or she simply cannot do, frustration and anger increase exponentially. This is a normal response to having one’s needs be unmet.

Tertiary characteristics of FASD are the very unhappy endings of chronic misunderstanding and frustration: jail, homelessness, addictions, and hospitalization.

It’s really important to understand FASD in this way – it’s not a mish-mash of all the symptoms. It’s not an inevitability that the person with FASD will become an addict or have to go to jail. It’s primary differences in the brain, what happens when those differences aren’t understood and needs aren’t met, and what can happen when those needs aren’t met over a long period of time.

Let me explain, using my child, and all his NOs, as an example.

  1. Primary characteristic: he is highly impulsive and so often says the first thing on his mind. Because he often can’t do as asked, the first thing on his mind is often NO, whether or not he is able to meet the request.
  2. Secondary characteristic: he is fearful and anxious about new things, and this expresses itself by a rejection of new things, leading to NO.
  3. Primary characteristic: he has trouble processing situations and conversations rapidly. He uses NO as a place-holder, a way to buy himself time to understand what’s being asked of him.
  4. Primary characteristic: he’s dysmature, so while many children outgrow the NO at age 4 or so, he’s really not there yet.
  5. Secondary characteristic: when he’s feeling most frustrated, he combines the NOs with name-calling, the phrase, “You are mean,” and sometimes crying and tantruming and throwing things to  communicate how he’s feeling.

The primary characteristics are how his brain works. The secondary are the reactions to dissonance between expectation and reality. We can’t change the primary characteristics, but we can change our OWN REACTIONS to the secondary and change his environment for better success.

Here’s how this works in real life:

Continue reading

Dec 12

Holy MTHFR!

If 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?

Continue reading

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!

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.”

Continue reading

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)

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

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

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.

Continue reading

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.