ACCEPTANCE AND DENIAL

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Denial - and coming to terms with my ASD child
By Michelle E.

I had a beautiful son - R who was my first-born. He was everything I always wanted in a first born - he had a wonderful disposition, slept and ate well and by the time he was 11 months old – my husband and I decided we wanted 10 more just like him! J

We got pregnant pretty fast with B - he was a difficult pregnancy and I was on bed rest for the last three months of my pregnancy due to lack of amniotic fluid.

B was another sweetheart newborn - a little colicky but after about 3 weeks and changing his formula 5 times - he turned into a smiling happy child.

R was 19 months old when B was born. He did everything quickly and was speaking in 3 word sentences by that time.

Months went by and life was nice. Busy - but I just loved being a mom to two beautiful boys.

We figured that B was a late talker (although he did say mama before DADA at 6 months). Looking back now - I realize there were problems that I didn't see but at the time I just thought R was doing all the talking for both of them. AT 15 months I started getting concerned - but kept it to myself. Apparently my husband, Rob was a bit worried too and kept it to himself. My mother ticked us both off by telling Rob when I was sleeping that she thought B was Autistic. He was appalled and said to my mom - "But look at all the things he can do" My mom - never to mince words lol - said to him – “Come on - you have an older son - look at all the things that he can't do that R did before 18 months”. I guess that hit home with Rob because he decided to take B with out my knowledge to his old pediatrician who had been in care of his brother (who has Downs syndrome) for 35 years. My mom - always the meddler lol - woke me up early to inform me that he was not going to tell me and just take him alone to see what he had to say. She insisted I go with him.

Thank God I listened to her and that she meddled because if Rob had to come home and had to tell me that my son was evaluated by a doctor with out my knowledge and that he had a developmental disability called AUTISM - neither of us would have survived!

Of course, I hated the doctor on sight, was ticked off at my mother and didn't believe any of it. He was just a late bloomer. I took him to three other pediatricians who wouldn't give me a straight answer – “Nah he'll be fine!  Well he could have PDD…” (WHAT THE HELL WAS THAT???) I wondered – ‘well what ever it is  - it’s better than autism’.

Rob knew way more about developmental disabilities - he "got" it when the doctor said it (the first one) because his brother had a developmental disability (Downs Syndrome). I, on the other hand, was happy to have him called anything but the dreaded "A" word and figured I could "FIX HIM” PDD, communication delayed, "had some issues", speech delayed etc. was better than autism.

Of course I will never forget the ride home from the doctor's office – Rob was driving - and we were both crying. My brother in law took the other two kids home so we could be alone.

I still didn't believe it - but I got right to work on finding out more on AUTISM and what to do for him. I was in complete shock over it. I LOATHED THE DOCTOR and my mother at the time. They were two instrumental people in my lives that made us face reality - and got B the help he needed EARLY on.

Ages 2-5 were the "bad years" although we got him into early intervention and a full time preschool handicap program that I had done my fieldwork in a few years back. (I had quit the decision to become a special ed teacher because it was way to sad to work with those poor children that would never make it to a ‘normal’ life.) Three years after I did my fieldwork there - B was enrolled in the exact same class that I had taught in - Ironic huh?

Still - he had his good moments and we had some good times that occasionally overshadowed the dark periods. B was extremely aggressive - and screamed constantly. I didn't know about Risperdal at the time but man we could have used it. We always knew B was smart - before he talked - he was writing long names like octopus and his name and other big words in chalk (his handwriting was neater at 3 then it is now). Then he started figuring out the numbers that corresponded to the letters. A = 1 B= 2 and so on and started writing out names and words in numbers.  We were AMAZED; he couldn't be autistic - he was a genius J!

Then my mom got sick and we moved out of the area (school had no hope for him in our old town) and we moved to North Jersey to take care of my mom who’d had a stroke and aneurysm and who was getting better but needed care for the rest of her life.

At 4 I tried to place him in a ‘regular’ nursery school still not believing that he had autism. That lasted a few weeks - even though I had told the teachers that he needed to be engaged at all times or he would wander off - they managed to complain about him with in the first week or so. So I pulled him out after a few weeks.

Then we went to the new school system and registered him as preschool handicapped. I was not happy but I knew he needed help. They helped him right away - getting him into the right school with ABA (applied behavioral analysis) and socialization and eventually he made it to public school by the time he was 6.

I remember the child study team telling me he was classified as communication impaired and me asking them point blank – “DOES THIS MEAN HIS SENTENCE OF AUTISM IS OVER????” They looked strangely at me and said that was a school term not a medical diagnosis.

I still was in denial.

My mom never came out of the hospital - she died February 19th at age 59 and I was crushed! If there were one thing I could do it would be to thank her for being so blunt with us right from the beginning. At the time, I was so angry with her - I never did get to thank her.

B was still aggressive although the behavioral therapist saved me from jumping off my roof many a day and so did therapy.

When my third son D was born - I watched him like a hawk - it was not going to happen again - after all I tested negative for Fragile X (I was so naive back then)

He talked on time - then regressed. I was on it immediately - the doctor said not to worry about it – “…he could be a late talker.” (HE SAID THIS KNOWING MY B WAS AUTISTIC!!!) But I swung into action! We spent so much money on him with speech and a full time private special education school (they had cut funding for important things like that) and we started the whole process over again. At the first meeting - I said "Well - My other son was thought to be autistic but he isn't really...

Still in denial.

Got some more strange looks but after I said it it started to sink in my head. Not completely though. I found the BBB Autism board and started reading the posts - they were way too similar to my story.

B was Autistic - it slapped me in the face like the first time I had heard it. I credit finally coming to terms with it when I joined the BBB Autism board. All the members were so helpful and I couldn't believe that so many were going through the same or similar situations as me.

Still, knowing more than I did 5 yrs earlier - now I wanted a diagnosis of Aspergers instead of autism or high-functioning autism - I still couldn't stand that name. So I asked my pediatric neurologist who specializes in autism and he bluntly told me I can call it what ever I want – it’s the same thing - B is on the Autism Spectrum and anyway I slice it (or call it) it will not change who he is. He explained to me that it is a broad spectrum but it really hit home this time.

So, I credit my finally being out of denial after 6 + years to the following people and groups - My wonderful husband who never gave up on me even when I was so down and out through all the bull --- we went through - I just wanted to die, and I blew up like a balloon and cried constantly - he has always been my biggest support system- and we have always been a team.  And all the teachers who helped get B to where he is now and the BBB Autism Support Network who made me see that others were going through the same things and got me actively involved, my pediatric neurologist and the doctor I loathed and my mother - who would be so amazed at the changes in B today. I know she is looking down on us and keeping us safe and she is very proud - I wish she could be here for him now.

And all my friends I have met through the various boards - tons that I have met - and tons more that I plan on one day meeting lol. I value all your friendships so very much - It means the world to me to have you as my friends and confidants.

Long story short - kids are doing well (still need work - we are all a work in progress) but things have gotten better and life in general is good.
Love,
Michelle E.

A Father’s Perspective
By Rob E.

When my son B was first diagnosed with having autism many emotions and thoughts ran through me.  The strongest among them was loss; a hole in my heart for all the things he would never do, be or enjoy.  In a very strange way, it was as if someone had died - and perhaps they did - my “normal” little boy and the typical hopes for the future were certainly no more.  In their place were sobering predictions about future outcomes, a family in crisis and a darkened tomorrow.  Many months ran together in a dark, almost gothic movie in my head.  I expected to wake up from this nightmare - but it kept on continuing - affecting how I felt about our family, our future and life in general.

I am a fighter by nature; it is hardwired in to my brain.  After a brief period of mourning I went about applying the full force of my intellect and tenacity to whoever stood in the way - teachers, child study teams, gawkers in public places and the rest of the world in general.  My wife, who never gave herself the luxury of mourning and being inactive, was the general in our war to ‘save’ B.  I was more like the marines; storming the beaches and securing the victories, which the General said, had to be won in the early going.

You never win this war - but you can have a lot of victories along the way.  If you pile up enough victories; your child “may” just approach the level of hopes and dreams you originally set for him.  This is the best you can hope for - there is no cure - and even this lofty status requires many battle scars.  Under the direction of our General, we ended up here - the promised land of sorts - for parents with autistic children.  However, we really paid the tolls for this success - which exacted a heavy price on our marriage, our family, our sense of self and even our health during this difficult time.

We are in a new, better place in all these areas now - years from the original diagnosis.  My wife and I are closer than ever, our family hums along with the chaotic joy brought about by a loving environment, Michelle and I have taken control of our personal and professional lives and determined we would look and feel the best we possibly could.  I had dinner with her and another couple just the other night.  I recall looking at her all through the evening and thinking how fortunate I was that this beautiful, elegant creature - smiling and confident - would be coming home with me.  She was the most fabulous woman in the room - and there were many others - but none could even come close to her.

Which leads me to a final reflection on all of what we have been through together.  If I had to do it all over again, I would have been more involved in the very early strategic decisions.  Even though we have been so blessed by B’s success, the “General” paid a heavy price for directing this war.  She suffered through depression, anxiety, low self-esteem and a myriad of other injurious conditions for years after we first heard the sad news.  Perhaps some of it was unavoidable - and everyone’s situation is different.  However, while I had the security of knowing which beach to land on she had to wrestle with the more difficult questions of if we should be on this beach or the next one.  She counted on me early on for the muscle and she was the engineer.  Unfortunately, these are life-changing decisions from which the engineer faces demons of self-doubt and second-guessing.  The muscle can relax when its work is done until it is needed again.  The engineer must live with her decisions - forever.

I do not believe it is a coincidence that we now share both the muscle and general roles and as a couple and family are supremely well adjusted.  Michelle can be as tough as 100 Marines and I can be as calculating as Perry Mason in the last five minutes of his show.  We share the roles - and the responsibility - more evenly.  Michelle is still the expert, but we make more decisions jointly because she has educated me and I have stepped up to the plate.  It is too easy to let your significant other handle the decisions and deal with the fallout.  This goes beyond traditional issues within child rearing and the subsequent roles - no one is prepared for this - so be prepared to assist the general from day one.  I believe in doing so, you will lesson the awful burden placed on your wife.  The father needs to make clear these are our children, our decisions and OUR consequences.  Thus, the success - or lack of success - is shared as well.  No one person should have to hold up under that kind of pressure - it’s just not fair.

As I write this Valentine’s Day is coming up.  My wife and I are married 11 years and I can proudly say that I am married to my best friend - and one of the most beautiful, elegant and engaging women anywhere.  I would match her up against any starlet or demy-god.  She can meet them on looks, beat them on style and crush them on character.  I would be lying if I said it was like this every day for 11 years; but it is now and we have had a lot more good than bad days.  Perhaps that is what you, as a husband, gain as a prize in the end if you hang in and do the right thing.  You wind up with a person who is closer than ever and whom you respect and admire more than you thought possible.  When all is said and done I have two heroes in my life - based on their courage and will to live life - my wife Michelle and my son B.  Two of the most glorious people ever put on God’s earth.

 THE IMPORTANCE OF DENIAL, by Khris

Denial is important because it allows you go on without falling apart, and eventually come to acceptance. Denial is one of the stages of grief, so is anger, bargaining, depression and acceptance. Denial is an important part of the process of grief, but if you get stuck in denial it can be dangerous for a child because parents are the ones who oversee their therapeutic interventions.