An Open Letter

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.

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.