trying to decode the small things.

In my math teacher role, I often remind my students that they get lost in the details, they aren’t trying to see the bigger picture.  This is one of the things that makes mathematics hard for so many people, they just can’t see the whole picture.  Similar to a puzzle that they don’t have the box for.  They put together pieces and chunks but never know what the final picture looks like. To them it is a series of smaller puzzles instead of one whole and I keep trying to redirect them to try and fit those pieces together.

I was reflecting on the goodbye ritual that M2 and I share while I drove to work this morning.  It made me smile warmly as I remember the care she puts into giving me a “kissing hand” and a “kissing back.”  The “kissing back” started at one point this past summer when I hurt my back so badly, I was incapacitated for a couple weeks. Even though my back is better, we continue the ritual.  The “kissing hand” comes from a book titled “The Kissing Hand” where a little raccoon is having trouble going to school for the first time and his mother puts a special kiss in his hand for him to take with him to school to think of her and how he is loved during the day. We bought the book when daycare drop off was becoming increasingly difficult a transition for M2. She took a kissing hand a few times and it was comforting to her, but then the tradition became her refusing a kissing hand and making sure I had one from her. Today, however, I was putting together the puzzle about this interaction and realized what M2 was communicating to me.  Her refusal of the kissing hand while simultaneously needing to give me one is basically saying, “I won’t forget you but don’t forget about me.” I could have told you before today that M2 has a insecure attachment to me, this is not the news. Children communicate through their actions, not their words. Now that these actions are speaking to me loud and clear, I can help her work through some of these feelings.

To say that M2 is clingy with me is an understatement.  And this is not normal preschooler clinginess, either.  When she was an infant that she was never satisfied by a normal cuddle or snuggle. It seemed as though she was never close enough to my body, she would writhe and re-position until she was pressed so hard against my chest.  I used to tell people that if she could unzip my skin and crawl inside by body, she would.  Still today, when she sits on my lap she does a similar thing.  In fact it actually is painful for me because her little butt bones just dig and prod into my thighs.

She is the sibling of a child with a relatively severe disability.  I often wonder how that feels, especially because she is too young to really understand that he needs extra help.  Instead she sees me prioritizing his needs over hers.  I have long been conscious of this and try to spend extra time with her as I can. But it isn’t enough to heal some of the early trauma that has made our attachment a bit tenuous.  She feels forgotten, as she must have mourning the loss of her first mom in her first foster home, mourning the loss of her first foster mom when she moved to our home and through all those social services mandated parent visits where I had to drop her off and shut the door, leaving her distressed and begging for my return. In the early days, I had to hand her over to strangers who transported her to visits, they would report back to me that she screamed the whole 2 hour drive unable to be soothed.  Attachment is a delicate thing. How can she be sure that I will come back?  She has been “left” before. She’s had far too many broken attachments in her short life. I think that figuring some of this puzzle out helps me guide my interactions with M2.  For now, I want to think about a way that helps her remember during the day that I am thinking about her too. Every day. All the time.

 

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trying to problem solve preschool

We had our first Parent-Teacher conference at our kids new preschool a few days ago. They have been attending this new school for 6 whole weeks. M has been coming home all smiles, excited to tell me about his day’s lessons and adventures. M2’s conference went well, she struggled a bit in the beginning but is making progress. I thought things were going well for M, too.  A little sit down with his teachers revealed just the opposite.   According to his teacher, M is spending 90% of the day totally dysregulated. They are seeing constant sensory issues and behavioral issues including defiance and aggression. The school is “requesting” that M have a one-on-one behavioral therapist follow him for 3 – 4 hours a day, everyday.  They said maybe he’d only need 3 or 4 months until they learned how to help him.  Mind you, we have to pay for this support person out of pocket on top of the $2550 a month we already spend on preschool tuition. No one ever said raising kids was cheap, but I didn’t realize that preschool is going to cost as much as college tuition. My sanity takes a toll because I live in fear each day that today is going to be the last straw, that we are going to have to find a new school at a moment’s notice. And the worst of all of this is that my poor baby is not thriving at school like he once was. School used to be his happy place.

I have some theories about why this is happening.

  1.  M has been very anxious about changes in my work schedule.  He is getting less sleep because he is having meltdowns every night from the anxiety that I leave for work before he gets up in the morning. Less sleep = less ability to control his emotions.
  2. I’ve written about this before about M’s clash with Type A personalities. Stressy/controlly types trigger his anxiety.   I know, I am one.  I have to be extra cautious not to exhibit my anxiety in his presence. It appears to me that his main teacher and the preschool director are both Type A. I’ve been worried about this relationship since day one.
  3. The mixed age group classroom. M doesn’t do well among younger kids.  They are too unpredictable.  He needs peers his age or older because they tend to have better impulse control.
  4. The school is not structured enough.  Transition is definitely M’s weak point.

I definitely felt blindsided in terms of the conference.  I was expecting a good report.  His developmental levels are all on track.  He has told me how much he likes school. I thought that finding a school connected to a therapy center would be a good idea.  However, I think that they look at Sensory Processing Disorder through an Autism lens.  In our case, M’s sensory issues, I believe, have a anxiety basis.  Thus he is actually very anxious (per usual) and what they are seeing is sensory issues and aggression.  I believe that anxiety is the underlying cause because, we see that first.  And unchecked it turns into sensory seeking/avoidance behaviors or aggression.  I think he knows that the sensory manifestations are more appropriate for school than aggression and that is why they are seeing so many sensory seeking/avoidance manifestations.

I have already put calls into M’s therapist, the school district Special Ed program, LA DCFS post adoption services, several area preschools (hoping for some openings in their classrooms in case of an immediate need for additional childcare), and the FASD specialist.

I am conjuring up my best Mama-Problem Solver while simultaneously trying to hold back the tears.  Here is my current brainstormed list of solutions.

  1.  Quit my job.  My kid really needs my full time care.  I am the primary wage earner in our family so this is not a very good option.  Unless of course we sell our house and move out of state to a place where it’s cheap to live AND G can find a job that can support us all.
  2. Hire a Nanny.   Two preschool tuitions + cost of one-on-one aide = more expensive than a Nanny.  Now if only I can find one that promises not to quit when he/she gets kicked in the face.
  3. Ride it out.  I will let the school be the one to kick us out. The are merely suggesting that we get this behavioral aide.  Of course, the underlying assumption is that if we don’t, they are going to expel him at the next hint of trouble.  At least this option buys us some time to consider option 1 and option 2.
  4. A new school.  Is this really an option?  probably not. I called around all morning this morning and didn’t find a single school with space. I will keep looking.
  5. Run away.  Sell all our belonging and move to the middle of nowhere where we can live quietly, “homeschool”,  and M can act any way he wants.
  6. Hire the aide.  I will just suck it up and hope for the best.

As usual, there really is no cut-and-dry solution  Although running away is looking better and better everyday.

 

 

 

 

 

 

trying to link anxiety and aggression

I had both kids DNA tests done, mostly for curiosity’s sake. But also because I’ve read that kids with FASDs are prone to genetic mutations. One of M’s most interesting mutations, is that he is MAO-A R297R  +/+ and that basically means his body (probably) does not break down catecholamines properly.  Dopamine, adrenaline, and norepinephrine are some catecholamines. We have further evidence that this genetic trait is being expressed because about a year and a half ago, we had his neurotransmitters tested via a urine sample by a naturopath and the levels of catecholamines in his urine were off the charts.

Here’s the thing.  Catecholamines cause the “fight or flight” response.  They activate the amygdala which triggers an emotional response to stress. It is common for kids with FASDs to be nearly always in the “fight or flight” mode.   One of my favorite FASD experts, Ira Chasnoff, describes it this way:

A child exposed to drugs or alcohol prenatally is like a pot of water on a stove at a simmer. The least stimulus will turn the flame under the pot to full heat and the water will boil over. One of the most important things we can do to help manage our children’s behaviours is to find out what causes the flame to erupt and then work to remove or correct that stimulus form the child’s environment.

It could be true that added physical damage caused by prenatal alcohol exposure to the amygdala also contributes to the behaviors we see. This combined with the genetic predisposition of not being able to process catecholamines results in ANXIETY for M. When that anxiety ramps up with a stressful situation or an adverse emotional state, we see aggression (he is almost always in fight mode).

Here’s the problem. I was an anxious kid.  I know some other anxious kids.  Anxiety is within my realm of understanding as a normal childhood behavior.  So before I knew better, what did I react to? Not the anxiety, because it was normal to me, I only reacted to the aggression, and not well. I got angry, yelled and took away privileges.  I wasn’t helping my kiddo deal with his anxiety.  I know now that my tendency to be triggered by his aggression was causing more anxiety and thus worsening the problem.  Like Dr. Chasnoff says, we can’t really control that our kids are erupting.   We can only control the stimulus.  My kiddo may be extra susceptible to these explosions because of the combo of his genes and alcohol exposure and I certainly can’t force him to be less anxious or to be less aggressive. As M’s parent, I can only try and control the environment to reduce his anxiety.  This is not always possible and we’ve had a summer of tremendous amounts of aggression due to situations beyond my control.  I just need to keep reminding myself, this is not an aggressive child.  M is an anxious child, a scared child, a child who needs his mama to support him in his struggle.

Friends and family, who perhaps mean well, have tried to tell us that what he needs is some stricter discipline.  If someone can explain to me how spanking fixes brain damage and alters genetic code, I’d be interested to hear about that.

More info from one of my favorite dads/blogs:

https://adoptingfaithafathersunconditionallove.org/2016/04/24/the-amygdala-stopping-fight-or-flight-at-the-source/

 

trying to understand perseveration

Last night, I was laying in bed with M2 reading her a story. M stomps up the stairs to her top bunk and angrily crawls over our bodies. I stop reading and ask him, “M, I see that you are angry.  What’s making you angry?  I would like to help.”  He replies, “I am just angry because my orange robot isn’t here yet.”  Ugh, the orange robot.  It is an imagined amazing toy that doesn’t exist anywhere but in the creativity and love for robots in M’s mind. This morning when M woke up, I was in the kitchen making lunches and he plopped himself down on the rug in the hallway watching me through the doorway.  First thing out of his mouth, “Is my orange robot here yet?”

Perseveration is one of the things we struggle with most often at our house these days.

“Perseveration refers to difficulties making transitions, shifting topics or thoughts, or moving on from one emotional state to another. Some people describe it as a tendency to “over-focus” on a subject. Neurologically related to brain damage in the frontal lobes, perseveration is a common characteristic of persons with FASD. Many FASD-affected individuals may “get stuck” (perseverate) so severely that it interferes with learning and staying on-task, or their ability to shift calmly and without prompting among topics and activities. Perseveration makes it difficult for persons with FASD to function appropriately at school, at home, or in the community.”  – FASD Network of Southern California

M perseverates most often on toys (and video games.) And when I say perseverate, I me he gets totally stuck on wanting and getting that toy.  I know that wanting and begging for toys is normal preschool behavior but this is beyond that. This definitely is related to anxiety and it is definitely not in the least about the toy.  He usually doesn’t even want the toy when he gets it, he will move right on to something else to perseverate about.  Right now its an orange robot. I have no idea where the idea of this robot originated. For about two weeks now, it’s his first waking thought.  He will ask about the orange robot over and over again.  “When is the delivery man going to bring my orange robot?” “I wish I had my orange robot right now.” “It’s taking too long for my orange robot to come.”  Mind you, I’ve told him that the orange robot is not coming. If I had said, “maybe” or “we will see,” that makes the persistence that much worse.   He needs very clear guidelines.  Also, at our house the “delivery man” is kind of like Santa Claus, sometimes cool stuff just arrives like magic.  He has no idea that I am doing all of this online shopping behind the scenes. We have been working on curbing perseveration and one of the ways is by consistently responding to his requests in the same way.  Now, if he is perseverating on something that might actually happen, i.e. a trip to the zoo, we try and be specific on the details so that he can relax a little bit.

M is chronically inflexible. He is not easy to distract or derail. In fact this is one of his good qualities as well, he tends to be very steadfast in all things. For now, I cannot expect him to stop talking about the orange robot.  In time it will probably be replaced by some other thought or desire. I try not to give in, but sometimes all I can do to get him to get unstuck is to give in. It’s a delicate balance.

trying to have a birthday celebration for a child with FASD

This past weekend was M’s fourth birthday. We had a wonderful day.  Starting with a fundraising event for the kids school, followed by a relaxing time seeing the Smurfs movie and ending with presents, dinner and cake with family members and two friends who are like family.

I knew after M’s first birthday that he didn’t like birthday parties. We threw a traditional first birthday where I cooked a feast and invited 50 people.  It was overwhelming for him.  He spent the day clinging to me and looking nervous and confused.  Not at all happy.  I don’t have a single happy picture of him from that day.

I felt pressured to throw a party for his second birthday as well.  I kept it simple.  But even still, he struggled with being overwhelmed the whole time. Well that was his last “kiddie party,” at least until I forget and give into his request for one in elementary school.

Because we have to manage his expectations, and produce a day that is very predictable, we chose this year to have a small gathering of the family members who live close.

We have learned in the past (i.e. Christmas) that a pile of presents is not a good idea for him.  Instead, for his birthday, I hid all his presents from Grandparents and the couple of things I bought him, in the closet.  Out of sight.  Otherwise, he would obsess over opening the next gift.   I presented him one gift in the morning, then another around 4 pm, and let him play with it for a while.   We FaceTimed with the grandparents as he opened their gifts from them about an hour apart.  We let him open the gifts from his Aunts as they walked in the door, no waiting (and obsessing).

He had requested a piñata earlier in the week.  I made no promise about it and just deflected the request.  But I hid the piñata away and brought it out just when it was time to let him smack it for a while.   Note that his sister was the only other child at the party.  It was basically a whole piñata just for them. There was no waiting in line or commotion of children running and grabbing candy as it fell out of the piñata.  You see for him, that would be an unhappy experience.  He can’t think as quick on his feet as other kids and his expectations are often unrealistic.  In order to manage this, I just can’t invite any other kids.

Thinking neurobehaviorally is really about knowing how to manage your child’s environment to set them up to be successful.  After a few years of practice, I think I am getting pretty good at this.  But I do have trouble managing other people’s expectations.  I often get asked, “when’s the party?” and I just say “he doesn’t like parties,” without going into too much detail.   I think some people interpret this as being a lazy mom.  I think other people might think having a piñata for two kids is silly or having a kid free birthday for a 4 year old is selfish.  But, believe me, it is what he needs to have an enjoyable time.

 

 

trying to help defeat the witch

One of my best friends is a fantastic dream interpreter.  Through her analysis, she has taught me to look for some deeper meaning into some of our subconscious dream induced thoughts.  I do think it is helpful to reflect upon those dreams that stick with you. Sometimes I don’t even know I am anxious about something until I have a string of anxiety dreams. Reflecting on those in my waking hours can help me to identify and deal with those sources of anxiety.

I always ask my kids when they wake up, “did you have sweet dreams?”  It is really just a informal welcome back to the world of being awake and much less of an inquiry.  Recently, M has been telling me about the dreams that he remembers upon waking.  Recently he told me he had a dream that he and “Bubbie” went on a date.  Bubbie is his beloved blanket, the two of them are practically inseparable.  He is the object that we did a 45 minute detour to pick up on a recent trip out of town because I don’t know what M would do without Bubbie to snuggle with at night. I don’t think he really understands what a date is but I think a “Bubbie date” is pretty darn cute and it represents the magic and innocence of childhood in a way that I absolutely don’t want to forget.

Over the weekend, when I asked him about his dreams, he said, ‘I had a dream that I was in my room fighting an evil witch, and you came in my room and told me to “calm my body.”‘ Oy.  That one threw me for a loop.  The way in which he recounted the dream communicated how unhelpful it was for me to come in while he was defeating forces of evil and tell him to calm his body.   Evil witches have been a fear thing for both kiddos since this past Halloween. The Disney witches have only added to this image M has of witches being a sly enemy.  It is not surprising that he had a bad dream about a witch. It was however, very insightful for me to know how unhelpful it is to him when I tell him to calm his body.  Even his subconscious knows that telling someone to be calm, when they are already trying to fight off the bad feelings of dysregulation, is USELESS.  When M starts to get dysregulated, it is like a reflex for me to tell him “YOU need to calm your body.”

Thankfully, this dream stuck with him and now it has stuck with me.  Next time I start telling him to “calm his body,”  I am going to stop myself and instead of talking, I will  fight the witch with him.  We know lots of calming techniques  and none of those involve telling him to calm down.

Here’s a great source of calming techniques aimed at the preschool age crowd if you are searching: http://connectability.ca/2010/09/23/calming-strategies-to-use-with-children/

 

 

 

 

Trying to not be so irritated

Warning: I am having a moody day. It’s Monday. It’s cold. The kids had a rough night sleep due to some inconsiderate neighbors setting off fireworks around 11 pm. I accidentally left my laptop at home so I am using my terrible desktop machine in my cubicle which is truly a doorstop because it literally doesn’t function other than being able to check my email and use Notepad. In any case, it makes a good excuse to blog a bit. It definitely helps me process and I have wanted to use this Lenten season to reflect more and appreciate the good things in life. AND IN ORDER TO DO THAT, I HAVE TO GET SOMETHING OFF MY CHEST.

M has been a bit off all week. G was traveling for work and I know it is hard on the kids when their routine is disrupted. In any case, as FASD parents know, the little things tend to snowball into mood dysregulation. As a form of self punishment, we went to a kids birthday party yesterday. G insists that it is better to have M experience these things and the dysregulated aftermath then to avoid them and never learn to deal with these types of overstimulating situations. In fact M did pretty well there. He found a quiet space when he needed it. But this is always how it is for him, he can keep it together and then he lets loose after. He was SO WHINEY at home. Everything is so “bored” and it is “taking TOO long”. These are his common complaints. I learned in Occupational Therapy that he is not really bored or impatient, but that he has trouble identifying which sensory input he needs so his body just feels crappy and he will complain about random feelings that he isn’t feeling. I guess for parents of neurotypical children, imagine that sometimes when your kid says “I’m hungry” instead of just giving him a snack, you have to guess from a list of possibilities; is he tired? does he need proprioceptive input? is he sad? or is there a tag irritating him? are his socks on the “right way” (which is inside-out)? I go through a list of things to check and see what helps. Last night, he couldn’t swallow food. This morning, he still couldn’t swallow food. This is often a symptom of overstimulation for us. He can only eat crunchy, salty things. The sensation of other things in his mouth makes him gag. So I take my kid to a birthday party and then he can’t eat for 24 hours afterwards. Cool.

But to get to the heart of what is bothering me today, I hate going to birthday parties. I truly feel like I have almost NOTHING in common with other moms. Birthday party small talk is excruciating to me. Especially those moms whose kids are super laid back and easy going and who have never had to feed their kids potato chips just to get them to eat something. The side-eye I got when I gave my kid a pile of chips (to calm his nerves) made me want to scream. And then cry. This particular circle of friends is particularly self-righteous and I overheard such things as “I feel so guilty letting him watch a movie on Fridays, you know, because of too much screen time.” and “I never would have thought to make a peanut butter and jelly sandwich, He has only had peanut butter and honey.” when it was suggested to use M&Ms as a motivator for potty training, a look of disgust and “She has NEVER had an M&M.”

I can overhear a little mom talk and brush it off. But today I wanted to reflect on why it bothers me SO MUCH. I think I figured it out. Not because I think it is a great thing to feed your kid chips and Pirate’s Booty as an alternative to not eating, but truly because of what it implies. If they think that they are forever ruining their child’s future if he/she were to ingest some food dye or a cheeto, what does that mean for my kiddo who was pumped full of Meth
and alcohol for the most important developmental period of his life? Now I am going to have a good cry, and then feel better.