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.

 

 

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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 out T-Ball

One of the attributes of kids with FASD is that they struggle with learning from (unnatural) consequences.  Time-outs and loss of privileges don’t tend to change behavior. This is because most of the time, kids with FASD aren’t in control of the behavior the parent/educator is trying to change (impulse control issues, sensory processing issues, etc.).  But what can be said about the neurotypical parent of the FASD kid who can’t learn from her mistakes?!  Because we are signing M up for T-Ball! After being kicked out of gymnastics and dance because he couldn’t handle it, I am going to send him to try yet another sport/extracurricular activity (C’mon, ma, haven’t you learned your lesson yet?). See this post and this one for more details.

Here’s the thing, the kid loves baseball.  Neither G or I likes the sport at all.  It must be in his genes somewhere because it is not something he learned at home. I actually have horrid memories of spending hours and hours of my childhood bored to tears while my brothers played and practiced. The only good thing I remember about little league was the candy and sno-cones at the concession stand. I, myself, am not even a smidge athletically inclined so I never played.  I still can’t catch a ball baseball-sized because of my lack of depth perception.  Despite my dislike of little league, I do like to support M’s interests.

We drive by Dodgers stadium almost everyday, usually twice a day. The shortcut to preschool goes right past the gates.  M talks quite a bit about someday being a Dodger.  He even has a cheer that he has written for his future fans to yell while he is at bat. M and M2 will chant the cheer as we drive past the stadium and I love the hope in this future dream.   We have a tee and bats and balls at home that we play and practice with often.

I know my boy pretty well and I already know where he will struggle.  He most likely will do a good job waiting his turn to bat and also will do a good job playing the field.   He has a good attention span and as long as the other kids are doing a good job waiting their turn, he will follow the lead of his peers.   Here’s the part that makes me nervous, can M handle being tagged “out”?  Probably not, if we don’t prepare him. I can already see the scenario in my head.  M as an angry boy refusing the “out”, probably kicking and hitting those in his way and then running away refusing to ever step foot on a field again. Our original plan was to role play getting tagged out and practice going through the actions of how we act when we get tagged out.  AND we would do this over and over and over again.   We asked M2’s therapist about this, he is an expert in preschool FASD techniques. He suggested that before we even try to practice, he needs to understand the rules of baseball.  He also suggested that we get some books to prepare him for what to expect in the game.  I went to Amazon and picked these out:

Froggy Plays T-ball

The Berenstain Bears Play T-Ball

The Littlest Leaguer

So here’s our plan:

  1.  Start reading the books at home. Paying particular attention to the parts of the game that might be hard for him.
  2. Watch some T-Ball videos on YouTube so that he can see what kids are supposed to do when they get tagged out.
  3. Practice in the park as a family, giving him a script to use when he gets tagged out.  (First we will model the behavior.)
  4. If all goes well, we will send him to T-Ball practice and see how it goes.

I am also ready, this time, to call it quits if it is not going well.  This amount of planning and preparing are just parts of being a parent of a kid with special needs. We can’t just expect that things will go well.  They won’t.  We need to set our kid up for success. If we’ve tried our best and things don’t go well, it is also our job to make sure that it is not causing M to feel like a failure.  This is why step 4 is so important.  If he can’t do it while we are practicing, then he probably can’t do it when he is on the field.  We will sacrifice the $40 sign up and try again when he is a bit older.

M, at 2 years old, first time swinging a bat.

 

 

 

 

 

 

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.

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.