trying to fit in to the parent world

A few weeks ago M’s therapist was asking about my “support system.” For me that term fits right up there for me with “self care.” I know I should work on these things.  When M first arrived, I tried to join a moms group but I was turned away because they told me they weren’t comfortable with bottle feeding.  Or rather they told me that “we are passionate about breastfeeding and don’t think you would be comfortable in this group.”  When hanging out with my friends who recently had babies, I learned this was probably true. The conversation always turned to birth stories and whose nose the baby has.  I rarely had anything to add to the conversation and did feel ostracized.  After all M was dropped off on a Saturday night by a DCFS van and we have no idea what his birth mom looks like or who his birth dad is.  

In recent months, as M sensory issues seem to have taken over our lives, I find myself more and more distanced from traditional parent groups.  We tried toddler music class but that was WAY too over stimulating.  We tried toddler gymnastics thinking the problem with music class was the noise and sitting, but that was worse. It just leads to other parents thinking I can’t control my kids behavior. They think that his episodes are normal toddler behavior unchecked by discipline. It is frustrating.  I haven’t yet developed a thick enough skin to ignore the glares and whispering.  

Now, I find myself with the most in common with parenting groups about kids with FASD or even other disabilities.  I find comfort in dismissing parenting techniques as being for NT children.  Unfortunately, I haven’t found the support in life, only online.  I don’t have a support system for those weeks when it is really bad and I need a break, I don’t even know where to start to find that kind of help. Thank God I am not a single parent at least I can lean on G on occasion.  Although he does prioritize work over family and I do the opposite so I end up bearing the brunt of the parenting and household tasks. 

It is my New Years resolution. I need to develop a support system.  I am desperately in need of a place to vent and a parent support group who understands what our life is like. 

Advertisements

trying to go beyond consequences

A few weeks ago when I was struggling with my parenting techniques, I wrote a desperate email to a local parenting coach asking for help.   I wanted to set up some one-on-one meetings with her to discuss our issues with M’s aggression.  I was informed that they have classes starting January. Great but what do I do today, tomorrow, next week.  She also recommend Heather Forbes’ Beyond Consequences, Logic, and Control.  That book had popped up in my “People who bought this item also bought” list on Amazon a few times.  I remember reading the description and thinking it was for “attachment challenged” children and thinking that doesn’t apply to us.  M is ATTACHED.  We have more of a problem with him being too attached.  But, being the researcher that I am, I decided to download the eBook and check it out.  And I was wrong about my initial opinions, the parenting techniques in the book are very applicable to us.

I couldn’t put it down and in fact it made me rethink about what trauma is caused by adoption.   We were M’s first and only foster home but in his first week alive, his 3rd mom. His first mom, his birth mom, hid her pregnancy from her family, had no prenatal care and even denied his existence for MONTHS  after he was born and DNA tests confirmed their relationship.  I’m not sure how those feelings were transmitted to him in utero but I think there is some trauma there. He was also sold/traded/given to another woman at birth.  She spent several days in hiding with him while investigators were hunting for them. Traumatic? probably. I also think the flood of chemicals that gets transmitted to the baby when moms are using meth create a sort of trauma.   Surges of adrenaline to a fetus, who knows what that feels like but I am theorizing it made him feel that he was in danger. Heather Forbes’ parenting advice is based in the theory that there are only two primary emotions: Love and Fear.  M does have a very fearful way that he interacts with the world.  That fear turns right into fight when it is strong enough. He is often slow to react and I can see on his face the transitions from fear to frustration or fear to anger.  M is hypersensitive to many sensory experiences and most of these things he perceives as a threat. For instance, he hates having his diaper changed.  We told the pediatrician this a long time ago when he first started telling us that wipes hurt him.   At that point, his sensory issues were not as evident and she thought wipes could not possibly be hurting him.  These days, if I mention a diaper change, I see the flash of fear and then I see the flash of anger and then I often get hit or scratched before I can even react to him appropriately.   But after reading Heather’s book. I changed my diaper change approach.  First, I give him a several minute warning before a diaper change.  He hates transitions so he needs this at pretty much any directed change in action.   At that point, I tell him I am going to be very gentle.  When I walk him into the bathroom to our changing table, I reiterate that point, I am going to be gentle and you get to tell me if you want to take a break.  I won’t lie, I used to hold his body down with one arm, gritting my teeth in frustration and change him as quickly as I could before he could wiggle free and bite me.   I was never rough, but I was trying to stay in control of the situation and thus causing him to be more fearful.   Now, for most changes, I can let him have more control while I talk gently and take our time, pausing if he needs it.  I have seen his whole opinion of diapering change in just a few weeks.  I can’t say he likes the sensation but it is so much more pleasant. Just in time for potty training!

 

 

 

trying to keep wildlife out of the house

My biggest challenge these days is trying to run errands with the kiddos.  First of all, as a working mom, my time to get things done ends up being at the end of a long day of work (for me) and daycare (for M and M2).  My kids are angels, for the most part, at daycare.  They have their regular kid issues, but no one would guess what they act like after school. It’s like M holds back all his frustration and unleashes it on me or M2 as “struggle concentrate” in the evenings.  See my post on the therapy swing for what we are currently doing to combat this!  Here’s the hard part: sometimes, I have no choice but to take them to do something (i.e. shopping) that I know will cause a meltdown.

I wish I had started this blog a few weeks sooner.  I would have definitely been able to better recount what I consider an absolutely dreadful Target experience.  I was on my last diaper and wanted to run in and grab a jumbo box of size 4 diapers and just a few things on my list that are difficult to pick out online. (I do almost ALL shopping on line these days! Shoutout to Instacart!)   M’s sensory profile is a mix of hypo- and hyper-sensitive but one of the things that drives him batty is large retail stores.  I don’t know if its the florescent lights, the movement, the sounds, the combo of these things, but whatever it is, makes him lose his composure.  He can no longer make eye contact, he throws himself into walls or onto the floor, he can’t sit in the cart without making it dangerous.   M2 is almost entirely hyposensitive to stimuli these days (although as an infant was the opposite).  So it is difficult to keep her from touching, licking, biting, everything in the store.  She won’t sit in the car, she is some sort of baby contortionist, she can wiggle her way out of any seatbelt and if I turn my back on the cart for even a second, she will be balance one foot on the shopping cart seat, one foot on a shelf, stuffing things into her mouth at rapidfire pace.  Seriously, what did FASD parents do before online shopping?

Back to my Target experience.  I don’t know why but my closest Target is always out of the big boxes of size 4 Huggies.  So then, I have to stand in the aisle with what should have been a 5 second task, grab the box of Huggies, grab a giant box of Target brand wipes and run out the door as fast as possible.  That didn’t happen, I had to read prices, compare sales,  and find something else that would substitute for our usual brand. It took too long.  And we were too close to the giant blinking Christmas display.  M lost it.  I mean. LOST. IT. He was throwing his body into the shelves, moaning, whining.  It was about 5:30pm, an already busy Target time, and I manuevered the cart with M2 seated and still buckled (thankfully not complaining too loud about getting out) and M writhing aggressively in my arms.  I turned out of the aisle to face the checkouts and, of course, there were only 2 checkouts open and lines 15 carts deep.   For the one minute I waited in line, M writhed so much he wiggled out of my arms onto the floor in a puddle where he convulsed kicking everything within reach.  Thank God for whoever the kind Target employee was who saw my struggle and opened a register just for me.  I was out of there two minutes later.  I wrestled M into his carseat and he was asleep by the time we got home 10 minutes later, exhausted, overwhelmed. My sweet baby, I know his triggers, why don’t I learn!  (Of course, I was also upset that he fell asleep so close to bedtime.  More on our sleep issues later.)

Because of that experience, I am scarred.  I can’t even imagine taking them to any store ever again. At least not without G for reinforcement.  But there are unavoidable appointments.  Like the one I had yesterday. Although the environment of the WIC office is not nearly as hard on him as Target, we had a quick height and weight check this week. They are only open until 5:30 and I had to bring the kids.

I know, the office is less crowded on Mondays than other days.  It is also way less crowded at the middle of the month than at the beginning or the end.  So it was a good time to go.  I planned in the morning that we were going after school.  I packed a few snacks and our current favorite sensory item to help keep him calm, right now it is a string with a truck attached that he can swing in circles.  I don’t know why this is relaxing for him, but it is.  He will watch it spinning, he will even spin his body to spin the truck around on the ground.

I was right, the office was not crowded when we arrived a little after 5.  We were in an out in a few minutes.  There was only one other kid  there and he was playing calmly.   There wasn’t a ton of noise or commotion.   M played with his truck on a string for almost the entire time.  I felt a surge of pride that I had planned this so well.  One errand that didn’t cause our entire evening to deconstruct.   M and M2 were both in a relatively good mood when we got home.  I was ready to put on some TV and let them veg for a little bit while I made dinner.  However, life likes to serve me up some humble pie just when I am starting to feel like I am in control.   I open our front door to reveal an enormous mess.  At that point, I have no idea what happened but the first thing I noticed was that nearly every Christmas ornament has been removed from our tree and  scattered all over the room.  I then notice the feathers.  Little tiny feathers everywhere.   Everywhere.  I walk a little farther into our house and peek into the room where there are masses of feathers everywhere.   I know from the look of the feathers that it wasn’t a down pillow explosion.  There is a bird in the house somewhere.   A bird that our cat must be torturing as we speak.  Because the majority of the mess was in the bedroom, I assumed the bird was in there so I shut the door so he couldn’t escape.  I didn’t need further destruction in other rooms of the house.  I called G frantically out of frustration but the reception is bad he thought it was an emergency and rushed home.

The kids thought the swirling feathers were fun. I saw M2 stuff one in her mouth and I LOST. IT.  My calm and successful evening went right out the window.  I yelled.  “STOP. IT.  GOsitonthecouchanddon’tmove.” M is not quite used to me yelling and I saw his face change from delight to fear and saw him start to meltdown.   He is sensitive.   He quickly transitioned that fear into anger and he went after M2 thinking it was her fault that the feather and ornament swirling fun time was over. I managed to get him quickly into a “time-in” to get him back to regulated and then started the giant task of cleaning up.  I had gotten all the ornaments back on the tree and feathers in the living room cleaned up when G showed up.  He found the bird, deceased,mangled but intact, in our bedroom.

I think these little unpredictable events are what I dwell on the most. I was smugly admiring my own success as I walked into the house yesterday.  I pride myself in keeping calm in stressful situations.   But this, this was not stressful.   It was just a mess.   Something easy to set right again.  This is when I lose it.   Now after a day to reflect, I am blaming it all on the cat.

 

 

 

trying to put into practice all that I read

The byproducts of understanding people from a neurobehavioral perspective is understanding, acceptance, peace and a profound shift in the emotional climate of the relationship and from there all else is possible. People with FASD are the innocent catalysts, our unexpected teachers, moving thinking into a neurobehavioral paradigm that finally recognizes brain function as the source of all behaviors.
—Diane V. Malbin, MSW
I have always been a researcher.  When I want to know something, I hit the books and journals analyzing and synthesizing all that I can find.   The title for this blog comes from an often recommended book that was one of the first I read after M’s FASD diagnosis,Trying Differently Rather than Harder by Diane Malbin.  At that point, the 3 hour tantrums were starting to subside and I thought we just had a bout with the “terrible twos.”  (That is what my well-meaning mom friends would tell me. “Oh, it’s just a phase, they all go through that.”) I put the book aside for months while we had a great few months behaviorally. But the easy days didn’t last long, and once again we had more meltdowns coming more often and I started picking up the book again.
The basic premise of Diane’s book is that standard parenting techniques don’t work with FASD kids.  These kids have organic, irreversible brain damage and trying to control their actions through behavior modification techniques just doesn’t work.  Instead, we have to modify the environment for their success.
I am the one learning to control my behavior and my actions.  If anything, this is making me more patient, more understanding and more thoughtful.  I have to move past the way I was parented (no complaints, my mom is amazing!) and learn new ways.   I am grateful for the opportunity to learn so much about brains and emotions!

trying to help him be calm

I am sure that as I recount M’s history, I will retell our battle with regional center and the courts over getting M the help he needed. But, after two and half years, I finally got some help for him through Occupational Therapy (OT).

His insurance is paying for weekly therapy sessions and though I’ve only been to three sessions so far, I am learning so much and it is already paying off.  I want to rave about my new favorite thing.  His therapy swing.

Sleep is a struggle for M.  He has trouble going to sleep, staying asleep, and napping.  I remember crying over his crib when I was trying to work full time with no childcare when he just wouldn’t take a daytime nap so that I could get a few things accomplished utilizing both hands.  It was not long after that we put him in an in home daycare so that I could actually get some work done during the day.   But he didn’t sleep there either.  Every day when I picked him up, I’d asked about his nap.  His daycare provider would just shrug and shake his head, saying “maybe 20 minutes.”  I suppose I felt better knowing that childcare professionals couldn’t even get him to sleep during the day.

At night, he has trouble winding down AND the more tired he is, the more aggressive he is. His new OT mentioned something about the swing helping to bring him back to center after some much needed proprioceptive work. For now, this seems to be just what he needs at the end of the day.  At night time, I rock him in the swing for about 15 minutes, and he falls off to sleep easily after that.  While in the swing, he says “ooh, cozy!” During the day, when he is feeling overwhelmed, he asks to go to his swing.  This is a kid who doesn’t like to be touched. I think he is getting the feeling of a hug and the gentle motion of being rocked without the irritation of human contact.

I know that eventually, he may need more than this swing to help. For now, it is working.  He is sleeping better and it is less of a battle to get him into bed.

 

 

trying to maintain his story pt. 1

M came to us April 27th, 2013 just 5 days old.   We had been waiting for his arrival for some time, but the call still felt unexpected.   G and I were working in his studio making a bookshelf for the then unoccupied nursery.   G answered the phone. Our agency got a call about a newborn baby boy who needed an immediate placement.  There were very few details about him. We were told that they didn’t know who his mother was and some woman apparently tried to kidnap him from the hospital.   The latter detail was really a major generalization of the facts.

G and I were prepared for a baby exposed to drugs.  We had taken extra classes to learn to care for drug exposed/affected children.  In fact, the only thing I thought I couldn’t handle was FASD.  I didn’t know as much about FASD as I do now.  To be honest, I thought of it as equivalent to significant intellectual disability.  I had no idea about the FASD spectrum. I’m glad we didn’t know, I love that we jumped into this experience feet first. Of course, we quickly fell in love. By the time we found out he was exposed to drugs, his history didn’t matter.  We were only focused on his future.It was only the second or third visit by our agency worker that she mentioned that his facial features were indicative of FAS.  I remember spending hours searching for infants with FAS to compare his facial features to.  They weren’t as prominent as the textbook examples, but it was relatively easy to see the flat philtrum, the epicanthal folds, and the thin upper lip.

But, M was a dream as an infant.  Other than the fact that he hardly slept and ate tiny amounts constantly, he was happy and easy going.

 

 

 

trying to start a Blog

Writing. This. Down. has been on my mind a lot lately.

I consider myself to be a planner, I like to think of all possible outcomes to all decisions and play through each one in my mind.   It leaves little time to remember the past.   I think writing these things down will help me in my journey with raising a son with FASD to see how M is progressing.  It always seems like 2 steps forward, 2 steps back.   But I know it is more like 5 steps forward, 2 steps back.  I just can’t remember what things were like last week.