I’d like to tell you about my son Daniel.
He is 8 years old and was diagnosed with Autism at age 4. When he was diagnosed, they
ranked him between a 2-3. To help understand that better, a 1 is the highest
functioning (sometimes called Aspergers) and 4 is the lowest functioning. He has a 144 IQ, which means he is
very intellectually smart, but is a disaster when it comes to social and
emotionally appropriate behavior. He is my 3rd son and 3rd
child of 5 children total. He has taught me that one type of parenting does NOT
fit all children and just because something worked with one child does NOT mean
it will work with another. There have been times where he has taken my
confidence as a mother and shaken it to the very core.
When he was born he had
a complete knot in his cord. The doctor and nurses took one look at that and
said “Do you know what this is? This is a miracle, most babies with knots in
their cord do not get enough oxygen and nutrients to survive.” As hard as this
journey has been with Daniel, I know that he was meant to be here and I was meant to be his mother.
My
Piece of Humble Pie:
When I was pregnant with Daniel I was visiting my sister and her son was
throwing a tantrum in the car and she looked at me in frustration and said:
"what do you do when your children throw tantrums?" I said in all
seriousness, "I don't know. My children don't throw tantrums." Which
at the time was completely true, Josh and Sam did not. Looking back at that
comment I laugh because I got served a big fat helping of humble pie...
Tantrums
and Melt-Downs:
Daniel used to throw tantrums that
could put any two year old's tantrums to shame. His tantrums would last for
30-40 minutes minimum. It was like once he started, there was no way to calm
him down. I found myself feeling like I was walking on egg shells trying to
avoid anything that would or could upset him, it wasn’t fair to my other kids
or to any of us, but it was all I knew how to do at first. These days his tantrums
the duration has decreased dramatically and he does different things, but he
still has melt downs if his senses are overstimulated or if there is a change
that comes up without him knowing about it ahead of time. He is very sensitive
to people’s emotions also. There have been times when my husband or I have been
dealing with stress or major life changes and without even telling the children
or expressing emotions related to that in front of them, Daniel has sensed it
and his negative behaviors have increased.
Self
Stim Behavior:
These can be characterized as repetition
of physical movements, sounds, or repetitive movement of objects. Daniel would
move his hands on the sides of his head while yelling "ahhhhh" at the top of his
lungs. He still does this when he gets overstimulated, but luckily he only
screams in his head while he does it now. He also sought deep pressure stim
which meant he would walk full speed ahead into walls or people. He also liked
spinning, it was a calming thing for him. Something I have learned is that
stimming helps provide extra sensory input when needed. It actually reduces the
overall sensation of pain by releasing endorphins that ease pain.
Changes...he
hates them, every single one.
Every change is met with opposition,
a fight or him running from the situation. I am fairly certain he could outrun
any Olympic Runner which he used to try and do on a daily if not weekly basis. He
still tries to run as a way of escaping something that is different. Example:
His aid got sick last week. I got calls two days in a row to come pick him up he
was overturning chairs, and running away from the staff. He seems to have no
fear of what might happen to him once he starts running he doesn’t look back. Giving him warning of change for example, you have five minutes left before your computer turn is over. I have to set a timer otherwise he will say "that wasn't five minutes!" He seems to be oblivious to time. If he asks nicely when the five minutes is up sometimes I will allow him to add on a minute or two.
Sticks to one person like glue.
Apparently with other children like Daniel they latch on to their Primary
caregiver for the first 5 years of his life this person was me He would look to
me to help them with everything. It was like he couldn’t function or navigate
his way through his life without me right there beside him. He was with me all
day every day, my little shadow, and he wants me to help him with or do
everything for him. Back then, I was "not allowed" to do things like
take a nap. Even with my husband home on the weekends if Daniel found out I am
napping he would pound on my door and cry "Mommy! Let me in! You can’t be
in there without me!" Yet when Daddy took naps or is sleeping in in the
morning he has no qualms with leaving him alone. This made it very difficult
when I was an exhausted pregnant Mama feeling like I couldn’t function without
a daily nap. These days there are a few people he trusts aside from me. His para at school that is with him 24/7. The sister assigned to him at church, and a few other close relatives.
Sleep.
Apparently, Daniel was born not needing sleep. He didn’t sleep through the
night even once until he was about 18 months old. Once he started he didn’t
continue to sleep through the night on a consistent basis until he was 6 years
old. I went through the same bedtime routines with him as I did my other kids, but he fought sleep till 11 or 12 every night screaming and crying. He would wake up at the crack of dawn cranky and irritated, but wouldn't take naps during the day. If he woke up at night he wouldn’t just fall back to sleep in our bed like
our other children would do. He would lie in between my Husband and I and put
his legs and arms up in the air and drop them, shaking the whole bed. He would
wait just until we were falling back to sleep and shatter the silence with
“Wake up! Wake up!”
Puns, Sarcasm, and Literal Thinking.
Daniel is a literal thinker. We can't joke around or be sarcastic with him. He doesn't understand it and it can be very upsetting to him at times. Someone once was complaining about another person's behavior in front of Daniel and said "I just want to ring their neck!" Daniel got a horrified look on his face and said: "you wouldn't really do that would you?!"
When they explained they didn't really mean it, he said "oh that was an expression, right?" He is slowly learning. But we have to make sure we say what we mean with him.
Diagnosis.
Daniel was diagnosed with Autism in Sept 2013. He was 4 years old at the
time. He has since been diagnosed with ADHD and Anxiety. The hyperactivity
"aggravates" his other symptoms often leaving him more frustrated and
angry. He has "spacial issues". During the testing he wasn't able to
close his eyes and remain standing upright. The doctor said it is like he is
not aware of where is body is in relationship to the things around him if he
can't see them. Which would explain why he has absolutely no understanding of
other people's "personal space." He has social issues and does not
pick up on things like social or facial clues, or other people's body language.
He is excited when any adult gives him attention or wants to play with them,
but doesn't understand that he can't climb all over them and invade their
personal space.
When he was diagnosed, my first
feeling was "I wanna fix it!"
As a parent, if one of my children gets sick or has a medical issue I want to
take them to the doctor and get the treatment or the medicine make them whole
or healthy again. It was hard knowing that there is nothing I could have done
differently to change him having Autism. It is also hard knowing that he would
deal with this for the rest of his life and there was nothing I can give him or
do for him that would "cure" it or take it away. The only thing I have
been able to do is give him the tools he needs to be as successful as he is
able to be.
Since then, Daniel has had about 4 years of Applied
Behavior Annalysis therapy also known as ABA, OT therapy, speech therapy, he is
functioning better now then he ever has before. I think part of that is due to
all the therapy he has had, and that our knowledge has grown in what Daniel
needs and the things that will help him be successful. When he was diagnosed 4
years ago I felt completely lost and unsure what my son needed to help him be
successful.
But today, I want to share with you some of the
things that I have learned that help him especially in a church setting to be
more successful in hopes that they may be of help to another parent who may be
struggling out there to help their child. Or teachers who may have children
with Autism in their church classes.
Tools for success:
Clothing.
Like many children with Austims, Daniel HATES scratchy, restrictive
clothing. He hates ties, he hates Sunday shoes. He wears cargo pants with an elastic
waistband, a button up cotton shirt with regular shoes. I know it is not the
“Sunday Best” outfit, but it helps him to feel comfortable and have one less
sensory overload.
The Special Bag for Church.
Having a bag with drawing paper, fidget toys, mazes, stickers, stress balls,
or other toys he can manipulate that make little or no noise, but are
interesting. These are toys the child only sees and plays with church. It
may seem like a distraction, but it is amazing how much a child with Autism or
ADHD pays attention to what is being said if they have something in their
hands.
Changing seats.
We can’t sit on the extra chairs in the overflow
area of the chapel because Daniel always runs for the stage. If we sit in a
bench it creates a space with boundaries and he does a better job at sitting.
In primary, he sits at the back at a table with a bag of special things. It
keeps others children from being distracted by the things he is doing and still
allows him to participate.
Snacks,
Snacks and sensations will help to calm or wake up a child. Try pretzels and
crackers in the “Bag of Special things.” They can also be a good reward
for positive behavior. Some children will calm down by having to suck things through a straw. It’s
all about creating pressure around the lips with the sucking motion and making
the muscles work. Using a tiny straw to suck up water, pudding, or
applesauce can do the trick.
Pay attention to Senses.
Children
with Autism experience frequent sensory overload. Every sense they have seems
to be heightened. Hearing center of the brain lights up. Noise cancelling
earphones, weighted pillow or jacket. Laying on the floor under the bench to
escape the noise and the lights, if the child is not apposed to touch, sitting
close to a parent or teacher with their arm around the child’s shoulders can
provide warmth and comfort. If the child has a special blanket that helps him
or her calm down, think about putting a square of that fabric in the bag of
special things.
Use Visual Ques.
When
we first started coming to this building Daniel would always try and run to the
stage in the back of the chapel overflow. My husband went back one Sunday to get
him from the stage and bring him back to his seat. Without saying anything, my
husband walked up to the stage with his arms outstretched. Daniel saw this and
ran to his Dad, someone he knows and trusts. My husband wrapped his arms around
him and took him back to his seat. It reminded me of the Savior. He comes to us
with arms outstretched and waits patiently for us to come to him. Having a
visual schedule for Daniel’s day really helped him in the first few years of
his diagnosis. He needed to know what to expect that day and it put him at
ease.
Establish expectations before class or
sacrament meeting.
Positive
reinforcement is so much more effective than punishing. So find something that
the child is interested in earning and say if you can make it through x amount
of time sitting in your seat you can earn xyz. Let the child take breaks, we
may be able to sit through a whole sacrament meeting, but our child may be in
sensory overload. Tell the child before hand that it is ok to take a break, but
they need to ask permission first, not just dart out of the room.
Having someone called to work with the child.
As
I shared in my experience with Daniel, children with Autism often latch on to
one person and look to that one person to provide a feeling of safety, someone
to help them navigate this world of sensory overload.
Daniel
has a sister in the ward currently assigned to work with him. She came to the
house and spent time getting to know him and playing with him in his own
setting where he was comfortable. It helped him to trust her and be ok with
having her help him during church. It is so important for the parent to be able
to go to class once in a while to be spiritually fed and to have a change to
talk to other adults.
Allowing the child to participate in
what ever way he or she feels comfortable.
Daniel loves to write stories and draw pictures. At the beginning of Primary, the Presidency allowed him to stand up and share with the rest of the group his latest story and the pictures that went along with it. The other kids were supportive and kind to him as he shared. Daniel also loves answering questions and correcting the teacher. His teacher is patient with him and says she doesn't mind at all when he corrects her. What a sweet person she is!
Be Persistent.
Remember change is
always met with opposition, so if you are trying to teach them something new or
different, the first several times you try, they may fight it, but just keep
trying. Example: Scriptures. Daniel used to fight having scriptures read to him.
I kept at it and now it is part of our nightly routine. He knows the stories
and likes to listen when I read them.
They are listening more than you
think.
Daniel always has a notebook that he carries around and draws in. He has his
head down in his Primary class and it may seem like he is not listening, but the
sister that works with him at church says he answers the teacher’s questions
and when the teacher asks what they talked about the week before Daniel knows
the answer and goes into great detail about it.
Be Patient and Love them because they
too are children of God.
God loves children. He loves all children. The Savior said, “Suffer [the]
little children … to come unto me: for of such is the kingdom of heaven.” He didn’t
say only let the well behaved, smartest, cutest children come unto me. He
wanted them all to come unto Him. He held them, and spoke to them individually.
As parents these little children came to us and were not what we expected they
might be, but we love them and are doing our best to help them be successful.
It is just a huge struggle some days. So be patient with these children, and
please try and keep judgement to yourself. You may never know how hard a parent
is trying with their child if you are not witnessing it firsthand. In fact I think as a parent we work ten times harder with our special needs children and feel like most of the time the outcome is less apparent than it is with our other children.
There are many books out there that are worth reading, but I would highly
recommend
“10 Things Every Child with
Autism Wishes you Knew.” This is a great book that I would suggest to
anyone who wants to understand Autism better.
