April is Autism Awareness Month, so I've had Autism on my mind more than most days. So, I thought I'd share the open letter Dave and I wrote about Brady's Autism Spectrum Disorder. I wrote it some time ago when Brady was 3 years old, so some of the details may have changed since then, but it gives you a good idea of what is on the mind of a parent going through our experience. Now at 5, Brady has blossomed into a bright and loving young man with a heart of gold.
We had waited a year, give or take, before really telling anyone. We told our closest family and friends, of course, but had chosen to not make Brady the poster child for Autism while we gathered our thoughts and felt like we were ready. This may not be the same or work for all families, but this is what we chose to do and felt that it was the best decision for us. Now that a few years have passed, we feel comfortable to talk more openly about Brady's condition. He's an amazing child and we are so, so, so very proud of his accomplishments!
When he was first diagnosed, I was all consumed with all things autism. But, now I have grown to realize that I am just a mom who happens to have a son with an Autism Spectrum Disorder. I am not trying to make him something he is not. With him we have learned to parent and encourage his strengths and help him grow in areas where he may need our help. His diagnosis is just that - a diagnosis. It is not WHO he is.
Brady on his 5th birthday |
An Open Letter
There’s a little secret that we have been keeping. Well, not so
much of a secret, but more of a big thing we haven’t told anyone yet. A while
ago, Brady was diagnosed with PDD-NOS. PDD-NOS stands for Pervasive
Developmental Delay – Not Otherwise Specified. “What the heck is that?”, you
might be asking yourself right now. Well, so did we. PDD-NOS is a disorder on
the Autism Spectrum. Basically, Brady has some autistic traits, but does not
meet the clinical diagnosis of Autism. I’ll save you the lecture on EXACTLY
what the spectrum is, but just so you have some sort of idea – There is a
spectrum, yes, a wonderful spectrum. This spectrum houses five disorders, which
fall under the umbrella of Autism Spectrum Disorders. The five are Autism
(which you are probably aware of), Asperger’s Syndrome (which if you watch
Parenthood, you are aware of), Rett’s Syndrome, Fragile X (which is
chromosomal) and PDD-NOS. While Brady does not have Autism, per se, he does
fall on the spectrum. It’s NOT Autism Lite. He is considered high functioning,
so in that respect, we are fortunate. But, let’s not get it twisted. Brady’s
condition is just as difficult and complicated as Autism, as are the other
disorders on the spectrum.
What constitutes Brady’s “autistic-like” traits? Well, for
starters, he has some issues in the areas of speech and fine motor skills. But,
don’t let the speech delay fool you. Brady is quite intelligent. And, fully
capable of most things. He just needs a little help with learning expressive
speech (well, a lot of help) and how to manipulate things with his hands. But,
the largest deficits he has are in the areas of transitioning and coping. And,
when I say transitioning, I mean, “I can’t leave this park because it will be
the last time EVER!” kind of issues. We are not speaking of normal run of the
mill tantrums. We are speaking of one to two hour, destructive melt-downs. You
may have seen glimpses of this, but trust me, we never let ANYONE feel the
wrath of a full blown one. We suffered through them all by our lonesome. And,
sort of alienated ourselves in a way. But, at the time, it felt just
overwhelming to not understand why Brady was not like the other kids. And,
often beat ourselves up that we couldn’t “teach” him to behave or want to
participate. I am completely oversimplifying his “traits”. They are areas he
will need serious help, but it’s not an obstacle he cannot overcome.
And, we realize that some of you may be asking yourself, “Why
didn’t they tell me?”. Well, the answers are quite complex and many. Mainly
because we had no idea what we were dealing with. Getting him diagnosed was
quite a harrowing and lengthy process. Not to mention, it was emotionally and
physically draining, all mixed in with depression and hope. We kind of were
subjected to crash course lessons in neurology, psychology, immunology and the
bureaucratic processes of health care and insurance. I mean, I know all there
is to know about bureaucracy but they didn’t teach me this in school. I think
that I just might be qualified to work as a brain surgeon or a professor of
bull shit at Craptolla University at this point.
All joking aside, we also went through a very real grieving process, because you grieve everything that probably will not be true for your child, like an easy, care free and all fun childhood. Brady will endure countless hours of “work” to help him. He will be frustrated beyond his comfort zones to make small milestones. He will work really hard to use his hands so he doesn’t feel like he’s wearing gloves to pick up little items. And about grieving, if you REALLY know Dave or myself, you’ll know we grieve best alone. We’ve grieved great losses together so we know. But, if you know ME, you’ll know, it took a nano-second for me to be over my “woe is me” and get to gettin’. Well, Dave too. We opted for the abbreviated grief process and went balls out for the gold. We immediately got the ball rolling and was off in several directions to get things initiated for Brady. I have spent a small fortune on books to learn EVERYTHING I could about PDD-NOS, Autism, therapies, alternative therapies and anything related. I could tell you all about how interrelated our stomachs are with our brains, amino acids and biomedical approaches. Some of them we adopted, some of them we did not.
All joking aside, we also went through a very real grieving process, because you grieve everything that probably will not be true for your child, like an easy, care free and all fun childhood. Brady will endure countless hours of “work” to help him. He will be frustrated beyond his comfort zones to make small milestones. He will work really hard to use his hands so he doesn’t feel like he’s wearing gloves to pick up little items. And about grieving, if you REALLY know Dave or myself, you’ll know we grieve best alone. We’ve grieved great losses together so we know. But, if you know ME, you’ll know, it took a nano-second for me to be over my “woe is me” and get to gettin’. Well, Dave too. We opted for the abbreviated grief process and went balls out for the gold. We immediately got the ball rolling and was off in several directions to get things initiated for Brady. I have spent a small fortune on books to learn EVERYTHING I could about PDD-NOS, Autism, therapies, alternative therapies and anything related. I could tell you all about how interrelated our stomachs are with our brains, amino acids and biomedical approaches. Some of them we adopted, some of them we did not.
What we do know for sure is there is a small window of early
intervention that produces significant improvement and greater odds of Brady
being able to be mainstreamed into “normal” (not my words) and “neuro-typical” (again, not my words) kid’s
activities. This window would have been ideal to capture before 3, but it
slowly closes around 5 or 6. With Brady approaching 4, I felt like I was racing
an hourglass to implement all sound and reasonable interventions as I could
without using him as a guinea pig. If they said I had to give him my right ear,
I would have ripped it off right there, but there wasn’t anything that was easy
as that. There were lots of lists here in our house – pros and cons, things to
google and books to buy. You should see my email inbox in the morning – 60-100
emails – with about 75% of them related to autism and anything cutting edge or
tried and true. The other 25%, if you are curious, were awesome sales and maybe
a joke or two. I mean, I have a son on the spectrum, but I’m still interested
in a good deal.
Just as you would expect, our lives felt like they were turned
upside down. We started to use the lingo. Neurotypical, early intervention,
biomedical interventions, enzymes, supplements, stimming, ABA therapy and IEP –
these are words that litter our daily conversations. We celebrate small
successes like Brady trying a new food or transitioning without a scream. We
praise GOD for letting him be “normal” in ways like potty training and
sleeping. We are GRATEFUL that he engages, is affectionate and never mean to
Weston. While we know he will always have “traits”, we are hopeful that he will
make huge strides towards mainstreaming. We understand that he will probably
never be malicious or hurtful because he isn’t capable of it – LITERALLY. But,
what breaks our heart is that he has so much work ahead of him.
So, know this... Withholding this information wasn’t about anything
or any reason really. We only told
Dave’s dad and less than a handful of really close friends that we couldn’t
hide this from. They were really our rock during this time. I hope you never
have to discover this, but as a parent, if there is EVER anything wrong with
your child, it hurts you more than them because you would take all of it on
instead of them but you can’t. It can make the strongest person a puddle of mud
going through this. And, if you are hurt or offended by us not telling you, you
are missing the point. It isn’t about you, not even about me or Dave. It’s all
about Brady. He is working sooooo hard to learn things that you and I will take
for granted each and every day. He will have to work six times harder (probably
an under-estimation) than any “normal” child his age. But, he’s strong. And,
thankfully, he inherited both Dave and my persistence. For all intent and
purposes, when it comes to interventions and schooling, we are aggressively pursuing
every option Brady can handle and tolerate. He is attending a special education
preschool class for children, most of whom are on the spectrum considered mild to moderate. He will be in
ABA Therapy to help him “learn” how to transition and cope. And, really, that
fills up a lot of our time – and the remaining time we spend helping him feel
loved and cherished and being a family. His lessons continue at home as we work
on speech, fine motor and just general fun-ness. It’s time consuming, but so
rewarding in many ways. So, there will be many things we pass on, like parties
and happy hours because we are either dedicating time to him or ourselves.
Plus, understand that some activities are overwhelming in a sensory capacity
for Brady, so we will not submit him to it. It’s just not worth it, not even
for free cake and a goody bag of candy. But, feel free to save us a slice. We
can always pick it up.
Because it is so
draining – all of this – we have been dragging our feet on telling people. We
are kind of past the phase of anger, fear, sadness and depression, although, a
little of that will always remain. We are kind of in the “make shit happen”
phase. And, I don’t think that will ever end. I kind of dread having to tell
the story over and over. It’s really kind of no longer a “story” but our lives,
every day, all day. So, please hesitate to make us the gossip of the town. It’s
not entertaining to us and we don’t want to be the “did you hear about”
conversation starter. Please realize how emotional this has been for us and we
don’t and won’t worry about the gossip. But, if you want to take me out for a
drink, yes, I’ll accept but let’s talk about the newest fashion trends and not
autism, um, kay?
AND, even though at first
thought it may seem devastating, it isn’t. Trust me, Dave and I have shared
tears, fears and anger. But, we have also experienced something much greater –
compassion, love and growth – which may seem cliché, but it’s something you
only get to experience through and during tremendous stress and tragedy. These
things can make or break relationships but we are so blessed that we have
strengthened our bond and family with this.
You may want to offer your condolences, or say “sorry”, but please
don’t. While we wouldn’t wish this on anyone, we aren’t “sorry” it happened. I
mean, life happens. Everyone will and has had their tragedies. This isn’t one
of ours. The day we discovered his diagnosis, we were devastated but also
relieved. Know this - we were always hard on ourselves thinking we had an
uncontrollable child. And, any parent will understand that. There were many
nights I cried and I think I about read every parenting book available. (Poor
Wes, stands no chance. I’m a parenting expert now.) But, now, we know that it
was sort of out of our hands and I was reading all the wrong books. I was
barking up the wrong tree. Now, we are gaining the tools to help Brady grow in
an environment that he can thrive. And, yes, our hearts broke that day we were
told Brady had an Autism Spectrum Disorder. But, even though a fracture WILL remain forever, our
hearts grew, as did our strength and resolve. We are able to now have a
compassion for others that we never possessed before. We do not take for
granted the smallest gifts life has to offer. We don’t judge others – don’t
question a parent’s actions or hope for failure to make ourselves feel better.
And trust me, we have all done it. We
also don’t have the patience for the small stuff that clutter so much of our
lives. In short, we feel like very
different people than we were before this. Very “tired” and drained, but better
and stronger as individuals and as a family. We know Wes will grow to be
compassionate and understanding and kind because that is who we are now as a
family. We all of the sudden have adopted new roles. We are now advocates (for
Brady and autism – namely early intervention), along with serving as his at
home therapists, homeopaths and friend when the others ones are not around. We
are experts that aren’t really experts in anything but Brady. And, now we are
pseudo-experts in early signs of autism. The signs which we always suspected
but let be dismissed by his doctor. But hasta la vista lame doctor. Now, we
have a team (yes, a team) of great doctors who not only give Brady the best
care, but help us keep a watchful eye on Wes, who thankfully is meeting all of
his milestones and doesn’t demonstrate any traits of concern. Never ever
thought my kid would have a psychologist, neurologist, pediatrician, speech
pathologist, occupational therapist and nameless
other “specialists”, but he does.
Okay, now that my main diatribe is done, I leave you with this.
Brady is still Brady. And, if you know him, you know he’s so extremely
loveable. He’s probably one of the most affectionate kids I know and I don’t
say this lightly. He’s a wonderful and protective big brother to Wes. He just
thinks a little different than most people. He’s very logical, linear, very
much black and white. Really, the biggest change his diagnosis brought was a
change in us. So, don’t dummy things down for him. Don’t speak to him as if
he’s stupid. Don’t coddle him and don’t enable him. He’s fully functional but
requires that you understand he thinks different. That’s all. We are confident
that he will be fine. We KNOW he is fine. And, here’s a quote that us
“spectrum” parents often quote:
Once you know one child with autism, you know ONE child with autism.
They are all unique and special. They have their own challenges and their own strengths. If this is your first experience with autism, it will probably not be the last of it. It affects 1 in 88 children* and boys are five times more likely to be affected. It is said that there may be 20-25% of Americans on the spectrum. Some will never be diagnosed. And, unfortunately, minorities are often diagnosed later – sometimes 2-5 years later – than others. So, as you can see, it doesn’t discriminate and you will ultimately know someone else that is affected by this, rich or poor. This was our first “personal” experience. And, boy, what a f’in experience. Bleh.
If you have any questions, please ask away. I probably don’t have
the answers, but I’d be happy to speak with you about it ;0)
xoxo – Trisha
*At the time that I wrote this, that statistic was true. But, now,
according to the CDC, 1 in 50 children will be diagnosed with an Autism
Spectrum Disorder.
What a heartfelt letter--made me laugh and cry! :)I've worked with kids on the spectrum for most of my adult life and they are ALL amazing little people! Brady is lucky to have you as a Mom!
ReplyDeleteHeather, thanks for the kind words! He's an amazing lil' man! I'm proud to be his mama!
ReplyDelete