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.

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trying to plan to stop planning.

I have always struggled with anxiety about the future. In a positive light, I call myself a planner.  My earthquake kits (yes, kits) are always stocked and I have mental lists preparing us for any emergency, health related, natural disaster or otherwise. I have life goals and short term budgets that support my long term budget. When I don’t plan and prepare for life’s emergencies, I tend to wake up at 3 am , unable to fall back asleep as my mind runs through all worst case scenarios.

Whelp, parenting has not helped me curb these anxious habits.  Imagine that.

During my first few months as M’s foster mom (because I fell in love hard and fast and I wanted to never let him go) I poured through the Welfare and Institutions Codes (WIC) so that I would know exactly what the legal proceedings are and what the “loopholes” might be if it was suggested that M be moved to another foster home.  This definitely came in handy when it was suggested that M2 be moved to another foster home closer to the social worker’s office.  I had to be prepared.  I knew I couldn’t protect myself from heart break but I was sure that I would know my legal rights.

In the same way, I now find myself researching interventions for kids with FASD in elementary school.  I am reading and preparing and I know a significant amount about the IEP process.  When I step back and think about this, I know that it is a little bit foolish. There must be better ways to spend my time, after all, my house is NEVER clean enough.  I am already anxious about kindergarten. I have a plan though!  (Two years of kindergarten. One at his current school and then a transition to public school at the same time as M2.) I am already concerned about his fine motor delays.  Good lord, his handwriting will probably be terrible!  I find myself on the internet searching for how I can best give him in home OT to improve his hand strength and visual motor coordination. When I step back and think of the whole list of things that I worry about, I can see that it is ridiculous. But I compulsively have to plan anyway.  I think it is a little bit like Earthquake preparedness.   We are going to have earthquakes, that is not the question, but will I actually need those  16 cans of tuna?  Probably not, but I have them just in case.

I have mentioned in other posts about my compulsion to control everything.  It definitely takes away from my quality of life.  It steals away my joy in the everyday moments.   We have had SO MUCH SUCCESS using PCIT.   We are almost graduated from the program after about 6 months and it has changed our life.  I find the less behaviors I have to worry about in the present, the MORE I worry about the future.  I guess that is normal, I don’t have to be ready for battle everyday.   But I want to be able to find the right balance between being prepared and being overwhelmed by all that the future might hold.   I want to enjoy now, prepare for the future and just get rid of the anxiety and worry.

 

 

An open letter to my family and friends during the holiday time.

The holidays are the hardest time of year for M. and therefore we need a little bit of help.

Most of you know that M was diagnosed with Fetal Alcohol Spectrum Disorder (FASD) and Sensory Processing Disorder (SPD). For those of you who haven’t done your research, FASD is a lifelong disability and his brain damage is permanent. He will not grow out of it. I am hoping to educate you so that you all can help us keep him as comfortable as possible. The energy and excitement of the holidays is extremely overstimulating for him. M thrives with a consistent schedule, a good night’s sleep, and managed expectations. All of these things get thrown out the window around the holidays.

The easiest solution for us would be to hide away at home with him and to pretend the holidays don’t exist. However, we love to celebrate and he will need to learn about the different rhythm of the holidays in order to manage when he is older.  I thank you in advance for the invitation to celebrate with you but it is very difficult for me to help M be successful all by myself.

One of the hardest things about raising a child with FASD is that it is an invisible disability. He looks and speaks like a typical 3 1/2 year old, but his maturity level and adaptive functioning is that of a child half his age. I ask that you remember this when we are visiting your home.

Any and all transitions are especially difficult.  At home we keep a consistent schedule, with transitions that he knows and practices. He most likely will not sit down to a meal with everyone else. Please don’t expect him to. He may not want to participate in any group activities, for example, opening presents. This does not mean that he doesn’t appreciate your gifts. He just cannot handle the sensory overload that happens during this time.

Please don’t expect him to eat.  He won’t eat new food in general and definitely not when he’s been smelling unfamiliar food cooking for the time period before dinner is served. Don’t be offended when I let him eat potato chips instead of your lovingly prepared meal. Eating crunchy and salty things is a part of his sensory needs. I promise you he doesn’t eat only chips at home. Trying to talk him into eating just makes him more anxious about eating at all.

Please don’t expect him to share toys with your children even when they belong to you/yours. If he is playing with something for an extended period of time at your home, he may be fixated on it as a source of comfort. In a new environment, playing with the same thing can give him the consistency he needs to feel comfortable.  If he brings a toy, don’t expect him to share that either.

If you find him hiding by himself in a dark and quiet room, don’t try and coax him out. He is quite good at finding a quiet place to get away from the stimulation and he usually needs this time to recover. Cutting him short can just cause him to become anxious or dysregulated.

Don’t expect him to hug you. If you touch him, even if it’s a gentle hand on the shoulder or a pat on the head, expect that he will pull away grimacing uncomfortably. He is extremely sensitive to touch and your gentle touch actually is irritating to him. Imagine that I walked up to you and rubbed your arm with sandpaper. You’d pull away too. This is how his brain processes most touch.

At some point, if he is dysregulated, he may become aggressive. His fight or flight response is very easily triggered.  He more often chooses fight.  Please let me handle it. We have practiced for hours in therapy to learn how to deal appropriately with this behavior.  Your comments and intervention can actually undo work we’ve been doing for months. We do not punish M for behavior that is out of his control. One of the areas of the brain most affected by prenatal alcohol exposure is the corpus callosum.  This results in heavily impaired impulse control. In general, I ask that you try to avoid any and all positive or negative attention to all aggressive and destructive behavior.

If we visit you and M seems happy and regulated, just know that is related to M having a “good day” and also to a fair amount of preparation on our part. It is entirely unpredictable.

Happy Holidays,

K.

 

trying to adjust my expectations

I go long stretches where I forget that M is significantly different than other kids.  I’ve mentioned this before, but people will often tell me that his issues are normal toddler/preschooler behavior. He is also SMART and quite a sweet and empathetic little guy. It is easy to forget that I need to take great care in choosing my words and actions when parenting M. When I have things managed well, this is absolutely true. Our behavior issues fall within the range of normal. But I often fall back into bad routines where I expect too much, change too many things in our environment and demand way too much of M. Then there is often fall out.

In the past two weeks, we have been kicked out of both dance class and Mommy & me gymnastics. We had a long stretch of success at gymnastics because we were taking a class meant for 18 – 30 month olds and M was already a year older than the oldest other child.  M2 was the second oldest. I definitely was starting to feel a little unwelcome coming from the other parents and I talked to the Coach about moving them up to the next level (meant for 2 – 2.5 year olds) and she said M wasn’t ready because he couldn’t sit still or follow directions. Okay, this is true. He can’t. Not in that scenario. She did say however, that she felt that M2 was ready.

This week, I made the mistake of taking them to a make-up session for a session we missed while camping.  Well, those babies in that class were all between 18 and 24 months. The stars were misaligned, I got there at 9:10 thinking the class was at 9:15, it was at 9:30.  That meant we had to wait a full 20 minutes for class to start.  In addition, the little snack store was closed so we couldn’t do our usual routine of getting a crunchy snack to calm nerves (this is a common OT trick).  I keep asking myself, why didn’t I just walk out then, before class started and before things were going worse. I knew things weren’t going well.  I threatened M that he needed to take some deep breaths and calm his body. I could see him tense his muscles and hold a grimace on his face.  I mentioned that his “engine was running too high“* and asked him what we could do to calm it.  BUT, we should have left.  I know better.  There is no coming back from that kind of overstimulation/dysregulation. Class started and within minutes, he wanted to use the rings and some little toddler was waiting patiently to use them while his mom helped out. I moved him away before he had a chance to push the kid off the platform and instead he shrieked and screamed and then punched me in the face.   Three coaches ran from their respective groups and stood by as he screamed and flailed in my arms.   We walked away and one of the coaches ran up to me and said, “this really isn’t working out.  We think its best if you don’t return to class. M is really too old for this class, anyway.” I got home to an email saying we had been “withdrawn” from our usual class.

For dance class, this happened as well just a couple weeks ago. I wrote about not fitting into dance a while back so that seemed inevitable.  The teacher was a bad fit for M.  She was the stressy/anxious type and that tends to be his worst match.   She send a kind but firm email saying we were not welcome to attend any more classes. Saying, “I’ve found that the energy has channeled itself into something beyond my skills.” I agree with her assessment of the situation. But I really wonder that why, since I knew it wasn’t working, did I push it?

I was super sad yesterday feeling a bit defeated.  We had a rough few days around the house, too.  I was giving way too many “time-ins” and not in a “hey, we need a break together” kind of way but in a very punitive way.  That’s the thing, about FASD.  It is so much less about the way the child is acting and so much more about the way people around them are acting. If I want M’s behavior to change, I have to change the way I do things.  As we in say in the FASD parenting world, you have to think “neurobehaviorally”.  This basically means adjusting the environment for success. It also means not punishing/disciplining children for things that they can’t do.  For instance, M really struggles with impulse control. It is not my job to punish him when he hits but instead to avoid putting him into situations that allow him to act on those impulses.

I cannot expect him to behave in a overstimulating environment.  That’s unfair, he can’t.

My FASD parenting support group had some great suggestions and good support.  It turns out group lessons are a really hard thing for many/most of our kids.  They reminded me to adjust my expectations and to look for classes for kids with special needs or just to do private lessons.

 

*The Alert Program is one of the proven intervention for helping Executive Functioning for FASD.   It has also been shown to actually help grow frontal gray matter in the brain to practice these skills.

Nash, Kelly Jennifer. Improving Executive Functioning in Children with Fetal Alcohol Spectrum Disorders Using the Alert Program for Self Regulation®. Diss. University of Toronto, 2012.

Soh, Debra W., et al. “Self-regulation therapy increases frontal gray matter in children with fetal alcohol spectrum disorder: evaluation by voxel-based morphometry.” Frontiers in human neuroscience 9 (2015): 108.

 

trying to go to dance class

M loves to dance.  He watches YouTube videos and can mimic moves with some surprising ability.  It’s always been his secret talent.  He will rarely dance in public or in front of strangers but for us and for his friends and teachers at school he lets loose. So I signed him  and M2 up for a ballet & hip-hop class.  I was super hopeful that since he loves to dance, that he could handle a dance class.  I knew it would take some time to settle in, but unfortunately, I think M’s delay in “settling in” is causing the teacher to stress which in turn is causing M anxiety.  He is truly a people pleaser, and when he feels someone is unhappy with him, the anxiety starts.  But when he is anxious, he starts to “sensory seek,” and this looks like running into walls and spinning in circles.

This is one of those times that I so clearly see both his sensory issues and his dysmaturity. He can’t handle being too close to other kids in class.  He can’t handle the amount of sitting it takes to get through the stretching part of the class.  He acts younger than the youngest kid in the class which he is nearly a year and a half older than.

I can see the other parents in the class squirming at my child’s behavior. I see the other kids behavior deteriorating as my kid runs circles around the dance studio.

And then I feel torn.  Do I quit before he has time to truly settle into the routine of the class? Do I stick it out and deal with the judgment?  How much do I am inform the teacher about M’s issues?   I already feel unwelcome.  The teacher and the other parents are already giving off that vibe.  It’s been 4 weeks.  How much time is enough time?  Am I pushing him to do too much?

Quitting is not my thing.  But neither is failure.   I am caught in the crossroads here.  I think this is the situation where I just pray and wait for the teacher to tell me not to register for the next session.

 

trying not to dread the upcoming trip

We are headed out of town for the weekend to attend the wedding of some very dear friends. We have found that nothing, literally nothing, dysregulates M like travel does. It seems as though he can’t sleep well in any unusual environment. He also loses his appetite. Those two things together are just a recipe for disaster. Of course, it makes him aggressive. Which to me is the worst of the dysregulatory effects. These are the moments I can’t let my guard down for a second.  He will do things like push M2 off a bed, or punch her in the face for absolutely no reason. He will scratch and bite and hit and spit me or anyone else he feels safe with. Totally unprovoked, he turns into a tiny ball of angry. One of the worst things about this state, is that he makes a face that looks exactly like the face my Dad makes when he is agitated.  Which of course, means that it is the face I make when I am agitated.  These kids, even though adopted, are mirrors of my worst traits.

On top of the travel, he has been generally dysregulated for the last two weeks. We’ve had back-to-back visitors.  Which is great for me, I love having family visit. When my Mom and Dad come, I literally can relax and let my Mom and Dad take care of me for a bit. Mom helps out tremendously around the house and my Dad is super generous about getting take-out and taking us out to eat.  Eliminating the need to cook and clean feels like a vacation for me.  G’s brother has been with us for the last couple weeks, the kids love him and he provides an extra set of eyes and hands for caring for M.  The change in the routine from visitors has M on a bit of an emotional roller coaster, he has so many good moments, but we’ve had some aggressive days at home as well.

There a few things that I’ve learned about traveling that do make things a little bit better.  First, we can’t surprise M with a change of routine.  That causes instant/persistent meltdowns.  It’s better to carefully introduce the ideas and the plan.  At the same time, I started to slowly release the information starting about a week ago that we were going to go on an airplane. This is tricky, as it can go either way, he can obsess over the airplane and want to be there instantly or he can be in a mood where he understands “later” and “next week” as things he needs to wait patiently for.  This time, the careful release of details seemed to work well.

Second, we have to bring enough familiar objects from home. His blanket is a must have.  It doesn’t matter that we are already lugging a ton of clothes and car seats, he has to have a few favorite items with him.  I’ve had other parents of kids with FASDs tells me that their kids don’t care much about toys. M is just the opposite, he has a mental catalog of every toy he owns and he takes great comfort in bring a few key things along with him.

Third, and maybe most importantly, I have to keep my stress levels in check. M tends to pick up on my nervous energy and then multiply it. Then I get more stressed and we snowball into a feedback loop of disaster.

I always have to keep my expectations in check as well. I used to dream about being able to travel and explore new places with my kids before I had a family. But in reality, travel has become something we do only out of necessity. There are virtually no plans that are set in stone, I have to be flexible and focused on M’s needs and emotional state. For us, while traveling, that often means spending hours at a playground or at least spending as much time as possible outdoors with no rules or expectations for behavior. I have little to no expectations for success this weekend, my goals are to keep M from harming/hurting other children as there will be quite a few around. This kind of situation is truly the hardest for him, weddings have behavioral expectations and uncomfortable clothes, food he isn’t used to and maybe the worst, having other people take my attention away from him. God help me if another adult tries to have a conversation with me while he is feeling uncomfortable. I expect that M will be in full anxiety mode and sensory overload and I will do all I can to keep him calm and happy less angry. Fingers crossed and prayers released.

 

 

isolation central.

I just wrote an email breaking up with the church group that I have been meeting with (almost) weekly for FOUR years. It formed as a small group of married couples who hung out and talked about our marriage issues.  This feels like an especially huge loss because it was my last social activity.  It was just too tough to manage.  We were meeting after the kids bedtime.  But lately, bedtime has not been going smoothly.  I think it is probably because the sun is still shining and even our blackout curtains don’t trick the kids into thinking its time to sleep. In any case, if M is still awake when guests arrive to our house, it throws a huge wrench into our bedtime routine.  This makes for a 3 hour battle for bedtime and a rough morning.

It now feels like I don’t have any friends left. I’ve never really had a ton of friends, but I did have a social circle. When you have kids, you definitely lose many of your friends that don’t have kids.  When you have kids with special needs, even your friends with kids can’t relate and you lose your parent friends.  When you have kids whose special needs include ugly aggressive emotional meltdowns whenever they are our of their comfort zone (read: when around other people), you lose all your friends.  Of course, that makes it sound like my friends are the ones who don’t keep contact.  It really is the opposite. For instance, if I get invited to a kid birthday party, I should say “no” because M can’t handle the excitement. But I want to badly to keep some social ties, that I often say “yes” and then face the aftermath. And then I feel guilty.  I know that I shouldn’t make M do things that are going to make him meltdown during or after.

This last month has been full of, almost entirely preventable, crushing defeat on M’s behavioral front.  We’ve had too much change and too many activities to keep his brain from being on overload all the time.  I just keep saying “no” to social invitations and keep focusing on trying to accept my new normal.  The new normal that is being so intertwined with your child’s life that you give up your own. My needs are no longer important, my self-care goal has turned into self-preservation.  I know there will be a shift in the tide soon, but until then, I am just hanging on to the side of the lifeboat.