How it all started 3: The darkness sets in. Monday, Nov 24 2008 


These posts were written some time ago, so I want to ask you to hold any comments about my conclusions until after you read Autism: My beliefs and ideas. That post has an updated version of what I understand and believe. Thanks.

The hard part about the early stages of developmental delay is that, if you are a new parent, you really have no idea what is happening. We turned to friends, family, and even our pastor for help. We heard a number of different thoughts on the subject, as everyone is free with the advice when it doesn’t involve them.

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Early Intervention, or the first time we heard “autism” Friday, Nov 21 2008 


I’m going to jump ahead a little to when we first decided to contact our local early intervention services.  The reason for that will become apparent, I promise.

So at 2, Raymond’s aunt commented on his lack of language.  She works for early intervention up in Maryland, so we naturally took her seriously.  I was definitely noticing the lack of language, but still in a great deal of denial that there could be a problem.  I was still of that folksy mindset that “some kids talk later than others.”  Still, after some heated discussions, I finally agreed to put in a request for the PE-ID program, which stands for Parent Education – Infant Development.  It is handled by our local community services board.  It is a federally backed program, but PE-ID is the name in Virginia. The name varies from state to state.

So the intake woman came out, and we began doing the paperwork.  She filled out what I now know to be a sensory profile and asked a number of questions about birth and development.  We were at a point where we felt like we were almost done, and my wife asked “What do you think?”  The intake officer looked us both in the eye and said “I think you should be prepared to accept that your son has autism.”

I think I literally saw red.  Let me explain my perspective for a moment.  Prior to accepting these issues, I felt it was my job as a father to protect my son.  This woman, who had seen my son for less than 2 hours, was telling me something that his pediatrician hadn’t mentioned to us.  I was furious, mainly because I felt my son had not had the opportunity to “defend” himself by showing his skills in a full evaluation.  Convoluted, I know, but denial makes logic flow through the most unlikely crevices.

My wife immediately burst into tears.  I said something like “I don’t think you are qualified to make that statement.”  I am fairly certain I kept my temper controlled enough not to curse, but I wouldn’t swear to it.  Naturally, the remainder of the interview was somewhat uncomfortable, as I was angry and my wife was in tears.  The intake officer left, and Kelly and I fought like there was no tomorrow.  What exactly we were fighting about is fuzzy now.  I think we were both so emotional it was the only way we could express what we felt, but I was still angry when I woke up the next morning.  Naturally, I called the agency to complain.  Her supervisor apologized for her statement, agreed with me, and basically said whatever she thought I needed to hear to shut me up.

So, thanks to my complaining we ended up with the director of Speech Therapy for PE-ID.  She was wonderful.  The evaluation went as well as it could, and naturally it discovered a significant delay in both receptive and expressive language.  We qualified for services, and we started weekly speech therapy visits. Interestingly enough, now that I think back, there was no indicated need for occupational therapy. I can only attribute that to Raymond’s refusal to cooperate in the eval, the beginning of a trend that we still see today.  I can’t really blame him.  Evaluations suck, doctors offices suck, and being asked to do the same things over and over for different people must suck more than anything!

She is a wonderful therapist.  She showed us how to engage Raymond, and that he could concentrate if he was interested.  That was the first real glimmer of hope. As we went through the process, I watched his language grow.  Incremental growth, but at least he was moving forward.  She was well spoken enough to break the news to us gently, and really helped us begin to navigate the autism road.   She was politic enough never to mention autism, assuming we would research on our own.  She was right.  Both my wife and I were researching autism seperately, not mentioning it to each other because we had already had several fights about it.

PE-ID took us up to Early Childhood Intervention Services with our county school system.  I want to give a few details about the program, just in case anyone is looking for something like it in their area.  First off, our local RACSB has a great questionnaire to see if you qualify.  That can be found here at the RACSB web site. A list of lead agencies for early intervention programs by state is here.  There is more info out there, just google it and you will find tons of stuff.  The program is actually created by IDEA, so the fact that both candidates were willing to fully fund IDEA is a really big deal for everyone in the disability community.   As long as the president elect fulfills his promise, he will have my support.

Finally, I attended a training class last night for our local Special Education Advisory Committee.  My wife and I plan on joining to help advise on areas that are underserved, and to make our voices heard.  Who should be there but the intake officer who first came out to our house.  I sat through the class, half there and half reflecting on how I behaved. I have thought on numerous occasions that without her, we might have been years in dealing with denial and refusing to see the light.  I have also often felt guilty for what I did, knowing as I do now that she was trying to help our son.  So, being a man of conviction and humility, after the class was over I went over, introduced myself again and apologized.  She seemed genuinely touched by it, and I also thanked her for having the courage to tell us her real opinion.  I told her an abbreviated version of what we went through, and she seemed genuinely happy to hear about it.  I even offered to write a letter to her boss!  She said that wasn’t necessary, but thanked me anyway.  We chitchatted for a few minutes and then went our seperate ways.  It felt good, as doing the right thing often does.

Substance over style, or quality versus appearance Monday, Nov 17 2008 


I have always been a quality guy.  I’ve purchased dozens of ugly automobiles based solely on the fact that they run and will require little more than standard maintenance.  I buy heavy duty tools, because I know I’m hard on things, and I tend to wear clothes that are comfortable instead of flattering.  It isn’t that I don’t care about my appearance, but I feel like if I’m spending money on it then it should fit several categories, and appearance is toward the bottom of the priority list behind comfort, durability and price.

I mention this because it ties into my approach to autism.  One of the hardest things, as a dad, was to watch all my expectations die as his symptoms took over and his function level declined.  I’ve read a number of stories that touch on this, and it is somewhat universal to our community.  It is similar to mourning, because you are laying to rest all of the plans and dreams for your child.  Now, all of a sudden, your child cannot do those things you planned for him, or at least you are told he cannot.  So, in essence, you are mourning the life of a child that never existed anywhere except in your mind.

I’ve tossed this around, and I think that’s why I moved through the denial phase so quickly.  Granted, it didn’t seem quick, especially to my wife, who reports my behavior during that time as “bearish” or “unbearable.”  I was miserable for the 6 months it took me to work through this.  Still, I meet moms and dads who are in denial for years, so I feel pretty lucky that I managed to get through the worst of it in 6 months.  Also, my son was fortunate that I managed to see through some of my denial to still work on getting him help.  I did do a ton of research in that time, which I also credit with helping me move forward.

I laugh about it now, because I’m the guy who is telling his friends not to look at their 401(k) balances right now, and adding that the money isn’t lost until you cash out.  They are just numbers on a sheet until you have the cash in hand, and that won’t be until you retire in 30+ years.  I think that way about my son.  Sure, he may not be the most social kid now, but who knows what he will be like in elementary school, middle school and beyond.  He is only 5, and has a lot of love and a lot more fight.  He makes me realize every day how small my problems are in comparison with his.  That helps me put aside distractions and do what I have to in order for him to grow.

So now I don’t play the expectation game, which is a good choice as it never suited me.  I have never tried to live a “normal” life, and I’m glad I don’t have one.  What I have always wanted, only wanted, in all my jobs, hopes and relationships, is quality.  Quality of expression, purity of emotion, truth in interactions.  Now, thanks to my son and wife, I have just that.

My life is of the highest quality I can imagine.

How it all started 2: 5 months through vaccine damage Monday, Nov 17 2008 


These posts were written some time ago, so I want to ask you to hold any comments about my conclusions until after you read Autism: My beliefs and ideas. That post has an updated version of what I understand and believe. Thanks.

Raymond continued progressing at a normal to slightly advance pace the rest of his first year. He hit all his milestones, crawling at 10 months, walking at 11 months and running since. However, his language came slowly. He did alright with words, but never seemed capable of forming sentences or asking for things. An independent child, he quickly figured out how to open the refrigerator and climb up on things to meet his needs. We began childproofing and locking down the house.

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How it all started 1: Birth through 5 months Monday, Nov 17 2008 


These posts were written some time ago, so I want to ask you to hold any comments about my conclusions until after you read Autism: My beliefs and ideas. That post has an updated version of what I understand and believe. Thanks.

Let’s start by saying I’m a proud dad, and I love my son very much no matter how or who he is. Second, I’ll mention the fact that my wife and I have worked very hard to help our son in any way we can. Third, my in-laws have been awesome, and supportive in every possible way. Finally, Raymond’s god parents have both been helpful every step of the way.

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Introduction, statement of purpose and exposition. Thursday, Nov 6 2008 


Hello all. I’m blogging this because I feel like I have to tell my son’s story. Not just for him, but for me. I need to wrap my head around it fully, from start to finish, and I think this blog will help me deal with some of my emotions and frustrations about his challenges. My son’s name is Raymond, and he has high functioning autism in addition to dyspraxia, hypotonia and hyperlexia.  As a parent, emotions run high regardless.  As the parent of a special needs child, I swear the emotions are on hyperdrive.

So a little background.  I’m a REALTOR, play drums in a rock band, just became a Master Mason in my local lodge and love my wife Kelly.  She is really my rock.  I have to say that I don’t know how the single moms and dads do this.  I would go crazy without her help, and I’m pretty sure she feels the same way about me.  We live close to family, which is good, because Kelly’s parents have been a tremendous aid to us.  They give us free child care, and even let him sleep over one night a week so have a respite.  Without that, I’m not sure either of us would be sane.

I guess the biggest thing I want to get off my chest to start is the denial period I went through when I finally realized he had autism.  As a dad, you feel obligated to protect your child from the world somewhat, and I went through a period where I literally thought keeping Raymond undiagnosed was protecting him somehow.  I was miserable, and had a great deal of difficulty accepting that my son, the light of my life, was impaired or damaged somehow and I couldn’t fix it.  I mean, I’m dad, so if I can’t fix it then it must be terribly, terribly broken.  I wondered if there was something genetic that I contributed that damaged him, or if some of my habits from younger days might have hurt him somehow.  I felt powerless, which is not how I am accustomed to feeling.  I’ve always been confident and assertive, but autism just destroyed me.

In hindsight, I now realize that was my long dark night of the soul, where my ego was destroyed in order to allow me to grow.  As I rebuilt myself, I realized there was hope.  My son was not dead, after all, and autism is a very different diagnosis than it was even 10 years ago.  I began to hope, thanks to a number of people I read on the internet, frustrated moms and dads who were sharing their story both to help others and to heal themselves.  I’m doing the same now, because if it only helps one other kid, then all my time here will be well spent.  I feel like I owe those people something, and want to pay it forward.

So that’s what I’ve got for now.  Its hard for me to write some of this, as the pain is still fresh. However, stay tuned.  I will be throwing my initial posts from my old blog up on this page, mainly because I couldn’t finish it then and it is a pretty concise backstory.  Also, I’m not even trying to keep this chronological.  That’s not how I think, and I want to share things as I think of them, so I’ll be jumping around in time a lot.  Anyway, welcome to my blog, feel free to comment and I hope you get something good out of it.


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