Hello everyone. My name is Tamara Wood. I am married to
Jeremy Wood and we have two boys, Alex who is 6 and Hunter who is 2. I am going
to tell you the story of our son Alex and our journey of finding out about his
autism up to now. It may be a little long so bear with me, but a story isn’t
just the beginning and the end and I really want to let you get a glimpse into
our daily lives.
Jeremy and I found out that Alex would be gracing us with his presence in November of 2006 and we started making our mommy and daddy to be preparations, which of course includes reading “What to Expect When You’re Expecting”, getting all of the diapers and wipees, and all of those necessary huge items that fill up a tiny two bedroom apartment to the brim. And of course we prayed and asked God continually for a healthy baby. I would occasionally get scared that something would be wrong with Alex. That he would have heart problems, get the cord wrapped around his neck, be missing vital organs, etc…The normal fears of a mother to be. However, I actually had a very normal and easy pregnancy with no problems and Alex joined us on November 13, 2006 at 6 lbs. 4 oz. after a normal delivery. He was a healthy, perfect little baby boy. All five fingers, all five toes, everything was wonderful, except of course the difficulty with getting him to breastfeed and the even greater difficulty of getting him to sleep. He wanted to be in constant motion and when we would finally get him to be deep enough in sleep we would try to lay him down only to have him wake up and therefore we ended up having to sleep in whatever position we had gotten him to go to sleep in. But, this was our first child and I had heard other mothers talking of these difficulties as well so it must just be what some babies do.
Looking back now I can see things
that we missed. Again, with Alex being our first child we didn’t see some of
the red flags. He couldn’t latch on to breastfeed, he made very poor eye
contact, he didn’t respond to our voices or touch, he lined up his toys, he was
a very picky eater, his speech was delayed, he didn’t respond to his name, he
didn’t seem to understand what we said, he had to have routines, he was a very
poor sleeper, he didn’t want us to touch him, he needed constant motion, and he didn’t like going to places
that were crowded and loud. I know…it should have been obvious right? For us it
was just how Alex was. We weren’t connecting the dots. We just saw a little boy
who liked to play by himself, knew what he wanted to do, and was very focused.
If he had done all of this and totally, completely ignored us then we would
have been more worried I think. But, he would tolerate us to a point and even
admit to our presence when we had something he wanted or we were doing
something he liked. However, we didn’t see that he wasn’t reacting to us; he was reacting to what he wanted. Now that we have Hunter I
can see that there is a huge difference between interacting while playing and
just using someone as a tool to get what you want.
I remember at his 1st
birthday we invited all of the family over and even bought him his very own
“make a mess cake”. Except that he didn’t want to come out of his bedroom with
all of those people there and when sat in front of the cake and made to at
least touch it, he screamed like he had been hurt! So of course we let him go
play by himself. What alerted me wasn’t the fact that he had done this, as it
was normal Alex behavior. What alerted me were the reactions of our family and
friends of amusement, but also somewhat confused by the way he avoided them and
wouldn’t react to their attempts at making him laugh. Again, now that we have
Hunter I can see that you don’t actually have to work very hard to make a 2
year old laugh. I still get a kick out of just calling Hunter’s name (which is
a joy to do in and of itself because he actually responds) just so that I can
make a funny face at him and see how hard he laughs.
We scheduled a check-up with his
doctor. She told us that if he still wasn’t talking in a few months to bring
him back. So a few months later, at 18 months old, we took him back to his
doctor and after only a few minutes with him she gave us the number to ECI (Early
Childhood Intervention) and the stepping stool diagnosis of PDD-NOS (Pervasive
development disorder-Not Otherwise Specified). Oh ok…so he’s just delayed? He
will catch up? We were actually relieved to have an actual diagnosis to go with
our sudden escalation in worry even though we had no idea what it was. And unfortunately,
this isn’t something that his doctor really explained to us and thus began my
relationship with the internet and research. Even after researching what PDD
was and getting a little more educated we still had no idea what a long road
lay ahead of us. We started Alex in ECI with his therapies and our education. Once
he was 3 he was immediately accepted into Early Head Start just days after his
3rd birthday. We decided that he would ride the bus to school every
day so that he would have a set routine in the morning of riding on the bus. He
loves riding around and we thought maybe this would help him to adjust. While
he did love riding the bus, he did not love going to school. We were those
parents that actually followed the bus to school on his first day to see how he
did. We parked far away and zoomed in the camera to see him as they led him off
of the comfort of the bus…and he was not happy. Every day when I went to pick
him up I asked how his day was and every day he had trouble. It took him
several months to get used to the rhythm of school and learn that there are
certain things you can and cannot do. Once he got used to the routine and knew
the exact boundaries we saw a significant change. Alex now loved school! All of those months of torture at seeing him cry and
harm himself were paying off. He was transferred to Locust Head Start the
following year and that is where we met the woman that would be his teacher
until he was 5. That classroom really helped Alex to bloom. His teacher and his
aides were all so wonderful and sensitive to his needs that he flourished even
more. He had his very own daily schedule and followed it to a “T”. Also,
several of the other kids in his classroom kind of adopted him. I would go and
visit often to see him having so much fun at school. It was a balm to my nerves
to see how well he was doing in such a great environment. And almost every time
I went I was told by several of the little girls that Alex was their boyfriend.
They would hold his hand and make him artwork. And even the boys befriended
him. They looked out for him and offered to help the aide hold his hand during
transitions to make sure that he wouldn’t try to run off. It melted my heart.
And not only that, but Alex began to respond to them! First of all, he would
actually allow them to hold his hand, he would allow the girls to pat his back
and even hug him, and he even began to lean over and put his head in their laps
during movie or circle time!
Of course he still had his off
days, but somewhere along the way Jeremy and I had unknowingly been rejoicing
in the progress and just trudging through the setbacks with God keeping his
promise of never giving us more than we could handle…even if it didn’t feel
like it at the time. Even though we knew there was a very high chance that some
of the things he did would never happen again, he HAD done it and he COULD do
it. And that was all that mattered. I don’t remember ever actually getting
frustrated with his lack of progress or maybe I should say with his one step
forward, two steps back progress. He would finally say words only to not ever
say them again. He has progressed greatly since that time, but by Alex
standards, not “normal” standards. It was only with our lack of communication
with him and figuring out how to connect that I had the most frustration.
The constant guessing game and
trial and error of trying to figure out if he was crying and upset because he
was hungry, thirsty, tired, sick, in pain, having sensory overload, etc… was
wearing on us.
Back when Alex was with ECI they
had suggested making pictures for Alex to try to help him communicate. So I
started by making Alex his own little menu of pictures for at the house that
were attached to Velcro so that he could “pick” what he wanted to eat. He
picked it up fairly quickly when I physically held his hand to pick a picture
and then immediately would hand him that food. But, we had to do it for every
single picture. He didn’t generalize well and still doesn’t to a point, but now
when he sees pictures he can connect that they probably are linked to some item
that he can “ask” for. Once he mastered that, I got a little photo album and
put pictures of his favorite restaurants and put Velcro on the front so I could
put out three choices for him. I would show it to him once we were in the car
and would again physically hold his hand and have him pick a restaurant. This
took a little longer for him to catch onto as he didn’t get the food right
away; I think it was a couple of months. He had to wait until we got there and
ordered. But, I just would take the picture with us inside and every few
minutes I would show it to him and say the name of the restaurant several
times. But, finally it clicked with him and we used that method until we got
his communication device in June 2011 and I actually still have it as a back up
just in case. His communication device is called a Vantage Lite and it has
really been a God send, along with his teacher who helped us to get it. He
started out with only five words on it and now has all of his foods and restaurants,
drinks, toys, therapists, teachers, family, animals, shapes, body parts, and
some emotions. Most of these are there to help to teach him what or who they
are. He really only uses the food and drinks consistently, but every day he
amazes me at his brilliance of having mastered this once unthinkable act of
“asking” for what he wants.
Of course, even with this awesome
new tool our days are still mainly composed of guessing what Alex wants or
needs. Some days he is just content to sit in his room and lounge around with
his mountain of blankets and watching TV and other days he is literally
bouncing off of the walls, getting in the sink, climbing on the furniture,
climbing on top of shelves and jumping off, trying to eat the “popcorn” off of
the ceiling, harming himself and/or us, and screaming at the top of his lungs.
And most of the time we have no idea what has changed or what set him off. He
still doesn’t understand enough to tell us if he is in pain, angry, sad, mad,
sick, etc… So sometimes my husband and I
feel like we are walking on eggshells trying not to do anything that may set
him off and yet at the same time push his limits so that he doesn’t get stuck
in his little world. Since the introduction of Hunter there have been a lot
more rough days since Hunter doesn’t remotely care about those
eggshells…lol. And I guess he wants some
payback after he wasn’t even 24 hours old and Alex gave him his first slap…as
you can see in the picture below the grandmas faces were priceless. Alex was
meeting Hunter for the first time and the first time Hunter let out a noise he
didn’t like he started pinching himself and well…you can see. Lol I had just
got the camera out and took a picture of his first time meeting Hunter and didn’t
realize he was about to do that…just a coincidence that I caught it. 
And of course Alex is somewhat
OCD. He notices EVERY SINGLE DETAIL. For
example, he notices if a food isn’t the same brand or doesn’t actually come
from one of “his restaurants” even if it has been put into their bag. And not
only do they have to come from a particular place, they also have to “look”
right. For example, if we get McDonald’s french fries he will only eat the ones
that are crunchy, short, and pointed on both ends. And he will only eat the top
bun of the burger and there better not be any sauce on it…and you have to give
it to him in sections. And this is just one example. He even has a specific
route that he walks to go to the kitchen and if he is wanting you to get
something and you go the shorter route he melts down.
Alex
Hunter
Alex is now 6 years old and is
still basically non-verbal, is considered what is called a wanderer (sprinter
is more accurate) and doesn’t understand potential dangers. Along with the
diagnosis of Classic Autism he has sensory processing disorder, two small
chromosome deletions, and pica (eating non-edible items/objects such as wood,
dirt, sheetrock, paper, etc…)
Non-verbal: He
does make his babbling noises and he does say some words, but they are hard to
understand and they aren’t communicative. He just says words that he has heard
or seen repeatedly like the alphabet, numbers, colors, shapes, etc… He is like
a little sponge soaking up all of this information. We know that he knows what
all of these things are and will point at them and name them, but not if you
ask him what they are. As far as we can tell, when we talk to Alex it’s like
our words are all jumbled to him and he only grasps those words that he knows,
but has no context to put them in with what we want.
Wandering: We
have to have all of the doors leading outside in our home chained at all times
and an alarm on the doors to alert us if they are opened just in case he pushes
the chair over and undoes the lock. If he were to get out of the house he
wouldn’t understand all of the possible dangers like vehicles, the elements,
and strangers. When out and about we have to keep a hand on him at all times
because he tries to run off.
SPD: His sensory
processing disorder causes his body to “search” for stimulation and also to be
over stimulated. He moves constantly all day and jumps and spins and flaps his
hands because his body tells him that he needs to. He gets upset with very loud
noises and won’t eat certain foods because it can literally be painful.
Pica: His pica
has been interesting to say the least. Along with the alarms on the doors we
also have an alarm on the cabinet containing all of our cleaning products along
with a child safety lock and child safety locks for cabinets with breakables
and sharp objects. And also child doorknob covers on any rooms he isn’t allowed
in without supervision which is basically every room but his own.
I was asked a while back how
having Alex had changed all of my perceptions of parenthood and I honestly had
to answer that he hadn’t. I wasn’t one of those girls who fantasized about
getting married and having kids. I mean I wanted to someday, but I was more of
a “don’t make plans until you have prospects type of girls”…lol. My perception of parenthood has actually
changed with having Hunter around. It’s like with Alex I went through parent
boot camp with a whole different set of rules and have studied and studied on
how to care for him and now with Hunter the study guide has changed! We are
having to learn how to be parents all over again with Hunter and constantly
asking family and friends “is that normal?” But, hey what is normal anyway? ;-)
He is the complete opposite of Alex in his social interactions and the way that
he behaves. But, they both have that fiery spirit and “can do” attitude that we
love even if sometimes we wish they weren’t quite
so “can do”. ;-) We love both of our
boys very much and wouldn’t trade either one of them. I can’t imagine our lives
any other way even with all of the stress, worry, and downright burnout that
comes with it. Alex has come a very long way has really started coming out of
his little world. He makes much more eye contact, occasionally responds to his
name, is getting better with his talker, and enjoys playtime with the family.
In a study I came across, Marsha Mailick Seltzer, Ph.D. at the
University of Wisconsin-Madison found mothers of adolescents and adults with
autism experience chronic stress comparable to combat soldiers. (*see
site below) So, I take that to mean that we are soldiers in a war that will
last our children’s entire lives and we need to help our fellow soldiers out as
much as possible. The parents and children affected by autism are not
casualties of this war; they are just the chosen few who were drafted. So stick
with us and let us all lean on each other and help out.
He
will not let you be tested beyond what you can bear." 1 Corinthians 10:13.
I am currently on the board for Reach for a Difference trying to get all of
the information on resources available here in Abilene, Tx so that families can
have a place to go to find out what all is available in our area. Please feel
free to share any and all resources that you come across.
God Bless,
Tamara
(*http://www.abilitypath.org/love-laugh--live/stress-relationships/coping/articles/mothers-of-children-with-special-needs-and-combat-soldiers.html)
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