I always try to be positive when talking to others about
Fragile X syndrome. When I share
my stories I try to make them funny or put a comical spin on them. Sometimes though it can be really hard to see
things positively or comical. Jackson
has some behaviors that can hurt or drive you completely insane, sometimes both
at the same time. It is really hard sometimes
to keep calm and not have a negative reaction.
Jackson is a master at pulling hair and he can grab that one
spot on your head that makes you drop to your knees. Sometimes it takes another person to help
free his hands because he grabs you with both of them.
If you ask him nicely to stop, he pulls harder. He also might throw himself to the ground
while latched on, or put his feet into you and pushes outward against your body. He has also grabbed my hair and pulled his
head into mine like an extreme head butt.
Sometimes you can see it coming because perhaps he isn’t getting his
way, or if you get too close it makes him anxious. He doesn’t like people to be too close. Other times the hair pulling seems to come
from nowhere. Maybe he was hurt and you
are comforting him, or you are playing with him and he is laughing and having a
good time. When you are public people
just stare at you as though they have never seen a child pull hair before. I try not to worry about those people who
appear to be judging us. It makes you just
want to cry either because he pulled too hard, or because you are so tired of
having to pull him off. We have tried to
track what triggers him to revert to hair pulling, but sometimes it is very
impulsive with no rhyme or reason. There
are days that the hair pulling drives you completely insane making it hard to not
yell at him or the person who might be helping you out. We are at a loss as what to do to keep him
from doing it. The answer is not pulling
his hair back for those who are thinking that, although I will admit I have
tried that and it did not work. We will
continue to try the suggestions our providers continue to give us.
If Jackson isn’t getting his way he reverts to head banging.
This is something he has done since he was around a year and half. He sometimes sports a bruise on the middle
of his forehead. Our last trip an ER a
nurse asked us if someone hits him, she quickly followed that statement with
saying that is something they ask everyone. We have been to the ER a few times in last few
years and that is the first time anyone has ever asked that, so it took me a
little off guard. Recently though Jackson
has been swatting at or hitting, mostly at us.
This usually happens if you try to redirect the head banging or hair
pulling. The swatting is newer and it isn’t that frequent, but I worry about it
happening at school. School says he
doesn’t bang his head or swat at anyone, so I guess he saves that all up for
us.
Then there are some of the things that drive me insane. Jackson has the ability to clear things off
everything… shelves, tables, and counter tops are a few examples. Because of this unique ability, if you visit
our house you will notice everything is up very high or you just don’t see much
in our house. We do have things, I
promise…they are just all put away. I
have had friends tell me not to worry that all kids are like that, but I really
don’t think they understand. When I say
clear everything, I mean everything. If
it is within reach it will be swiped off in less than .2 of a second. We give people heads up of this ability, especially
when we go out to eat, but by the time food is ready to come to the table and
all seems to be lost our server. Please all waitresses and
waiters please don’t try to server our food over our sons head or stick
anything right in front of him. We had a
waitress deliver hot soup right across Jackson and try to hand it to Sara when
all she had to do is walk over to Sara’s side of the table and give it straight
to her. Jackson swiped the bowl of soup and it burned his hand, but of course we are the ones left apologizing. In our house all of Jackson’s
books are put away in a cabinet, his toys in bins. Our bathroom sink only has hand soap on the
counter. Our decorative shelf is empty
unless we have a house showing, we even had to remove the individual selves in
the middle because he figured out how to lift them up and drop them.
Jackson also
likes to knock things over like chairs, lamps, trash cans, and plants. You can redirect him away from the tipping
object and send him to his preferred activities, but he will go right back to
it. Jackson is an awesome bait and
switcher. We have to put our dining room
chairs away until company comes to visit.
The kitchen is locked off with baby gates. Pillows are not to be on couch, they are to
be thrown over banister and down the stairs along with TV remotes, cell phones, or
anything that he gets his hands on.
Every door in our house is closed and he is close to figuring out how to
open them. Not looking forward to that
day. Seriously it is super extreme, my
son is the Tasmanian Devil and he does these activities with a giggle and a
smile. I grew up watching my siblings
and toddlers in my neighborhood; and I don’t recall it ever being this extreme. So when others say to me, “Oh he is just a boy or he is just a 3 year
old, all 3 year olds are like this..” I
laugh and think to myself, “I dare you to invite us over…” Most 3 year olds I have encountered in my
lifetime even those who have behavior quirks can be explained to why this is not
an acceptable behavior and once they experience consequence like a timeout
they most of the time they learn not to do that behavior again. I wish a timeout would work in my house. Please don’t tell me to spank or discipline
my child. Most of the time the behavior
is attention seeking, so even if you give the child a negative response they
are still getting what they want which is attention in the first place. I have gone to a few behavior workshops and a
parent training program on autism and autistic like behaviors, I personally
think all parents should attend such programs if possible. If you are going to give me input on how you
would handle these behaviors then come take a class or attend a workshop with
us. Now I am sounding like I am ranting and venting,
which is not my intention. What I am
trying to say is sometimes it can be so hard.
Sara and I attended a Fragile X behavior workshop last year
and learned so much from this. We both
felt overwhelmed with information when we left, which is a good thing. One thing that stuck out is that it is easier
to change the environment than it is to change the behavior; however this is
easy to forget when the behavior is present. The shelf clearing I mention
above, Jackson is not the first fragile x kid with that talent. We know that fragile X syndrome can exhibit
many challenging behaviors, but we really worry about the aggressive
behaviors. The hardest part is figuring
out what triggers the behavior because there are so many factors that can cause
these behaviors. Jackson seeks a lot of
sensory integration and we give him tons of throughout the day. Jackson has an indoor swing, a brush for his
hands and arms to be tickled (or our hands work as good tickling devices), he
also likes to get squeezes and rolled on (I am a human steam roller), he has an
indoor trampoline, his chewy tubes are amazing, and he has a rocking
horse. All these things help with all his
sensory needs. I am really looking
forward to our trip to Chicago to visit Jackson’s FX doctor over the Memorial
Day weekend. We have so much we want to ask, especially now with Jackson’s
seizures. We will also have time to talk
about his behaviors and medicines. I am
also looking forward to going to Miami for the FX conference in July. We are going as a family and there are so many
sessions that we can attend. I am so
grateful for these wonderful opportunities to learn and discuss things that can help my son
succeed. No one said parenthood was easy...
