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May 24
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by Doug Goldberg

I would have to say that the worst time in my marriage was before collegeman (DS1) was diagnosed. No one had any idea what was wrong and no one offered any solutions that made any sense. Hubby and I were at odds about what was wrong and how to handle it. I do know that if there had not been a diagnosis and if things had continued in that downward spiral my marriage would have faltered. You cannot continue to raise children and not agree on how to do that. You cannot continue to live in a marriage when there is no acknowledgement of a problem. You cannot continue to be with someone who doesn’t agree with anything you do or say. So luckily for us, collegeman was diagnosed and we figured out what needed to be done to help him. So contrary to all those statistics that tell you that an autism diagnosis will doom your marriage…it actually saved mine.
 
Interestingly too, of all the people that have gotten divorced, that I know, none of them had special needs children. The people that I know who have divorced actually are people who outwardly seem to have no real issues in their lives. Their children have “typical” issues; their marriages and lives are on the “typical” trajectories. Why people divorce is varied and private, but I reject out of hand that having a special needs child dooms your own relationship. Even on the show Parenthood they preached that nonsense that 80% of all families with an autistic child will eventually break-up. What having a special needs child may do is make the cracks in your relationship more apparent but in the alternative what it also does is strengthen those bonds that were there from the very beginning. If you had a strong center before your child was diagnosed that center will strengthen, if there were problems before hand then it will make those problems worse. I don’t know where that 80% comes from, but truthfully I reject it out of hand.
 
I know that that is what happened with us. Once we knew what collegeman’s diagnosis was, I knew what had to be done and so did hubby. Our goal was as it should always be, to save our child. The truth is that had been the goal all along, but we just had no idea what to do and how to do it. But as far as we were concerned once collegeman was diagnosed, we had a goal. We weren’t quite sure on how to attain that goal, but we knew what had to be done. We knew we had to move out of New York City. That had been a nightmare on both the private and public school front. I have told the story of the district director in my town that helped us and basically took us by the hand when we moved to our little hamlet in the country (read here).
 
We were truly lucky to find the help that we did for collegeman and then later for his little brother HSB. This help has enabled them to see the future for what THEY want it to be. Whether collegeman goes to law school or find some other way to better the world, or HSB (DS2) uses his love of video games and media to also better the world is something they are going to have to decide for themselves. But they have the ability to make that decision and the right to make that decision as well.
 
Now I will not say that everything over the past 28 years, yes 28 years of marriage, have been rainbows and butterflies. Even though in many respects it has been great. There are always bumps in the road. Every real marriage has bumps from time to time. The secret is to work on the bumps and overcome them together. Truthfully for us the issues always were even when you know what has to be done for your child, it’s the getting them done that can be hard. But when you have a partner who sides with you and works with you and holds your hand when it needs to be held, then you know that the battle is mostly won.
 
 
(apologies to those who can’t view hulu.com)
 
I even say that about the diagnosis. That once you find out what the issue is you have the battle 90% won. It is trying to come to grips with what is the real problem that causes so much consternation and trauma. But then what do you do with the feelings you have once the diagnosis is official. You have a sense of relief for certain. But you also have a tremendous sense of sadness. Does it make you a bad parent that you are so sad about who your child is?
 
I believe that we all have dreams of who are children are going to be. I remember when collegeman was little and very outgoing, especially with the cute little girls, I would actually dream of his wedding day. I know its silly, but I have heard mothers of daughters start to plan their children’s wedding practically from the day they are born. It is not so much the concept of wedding as it is the concept of life’s milestones. I don’t know why I dreamt of weddings instead of bar mitzvahs; but that was where my head was. I suppose I was thinking that one day someone special would love him. Immediately upon hearing the diagnosis I stopped having that dream and haven’t had it for the past 15 years. I don’t know if I ever will have that dream again. It is not that I don’t hope for someone so amazingly special for both collegeman and HSB, it is that milestones are very different in our world and they take on a different tenor and timetable.
 
So that is one reason that you can be sad. The hopes and dreams change and they actually become so very basic. (Read here.) What you even hoped for for yourself changes. Your life and your goals are different. Your wants and needs are different. You live outside the society in which you are raised because no one really understands what you are going through. The people that you thought were your friends are not and the relatives that prided themselves on being family disappear or worse think they know what to do with your child offering unsolicited and ignorant advice then getting mad that you don’t’ listen to them. The stress is tremendous. The lack of support is tremendous and the ignorance that you deal with on a daily basis, no matter where you go is tremendous. You bet you are sad. You bet you are angry. You bet you are just so pissed off you want to hit that creep in the supermarket. (Here)
 
You know what, its OK. It doesn’t mean you don’t love your child. It doesn’t mean you don’t love your spouse. It doesn’t mean that you are a terrible parent. What it means is that you are human and that is something you need to remember. So don’t forget about yourself when it comes to getting help too. Find the time to talk to someone who understands; who is not judgmental. Someone who knows what it is to raise a special needs child.
 
The Psychiatric community talks about the diagnosis and dealing with the realities as a period of mourning for the child that you thought you had. I reject that notion. We are not mourning the child we thought we had. That child is right there in front of you. You are mourning nothing. I think therapists don’t truly understand sometimes the realities that we face and use outdated and unrealistic paradigms in viewing the world. There have been so few studies actually done about parenting a special needs child that the psychiatric community takes what it knows about “regular parenting” and extrapolates from that. I think they haven’t a clue. Of course, they think they know everything and one thing I have learned is to be very darn sure to also think for yourself. There are too many egos involved in the psychiatric community and to many professional reputations on the line. Honestly I think the powers that be loose sight of what they are supposed to be doing and that is finding the right answers, not necessarily what they think the answer should be.
You see you are not mourning your child, what you are, is terrified and pissed off. There are so many unknown variables in the future that you have no idea what to expect. You don’t know about therapies and which one will or will not work. You don’t know if you can afford everything your child will need. You don’t know how to accomplish the goal. Quite frankly, you are terrified that if you don’t give your child a particular therapy then that is the one therapy that would have changed their lives for the better forever. This is not about being sad. Psychiatrists have no clue. It also doesn’t help when you have to battle with them too. (Yes, I am having issues with our new psychiatrist. We are going to have to have a discussion with him next week. I will let you know if he is still our new psychiatrist when I am done.)
 
So don’t worry if you feel “sad.” Don’t worry if you feel angry. It is normal. It is just fine. But do deal with those feelings. Try to work through them. It is not good to walk around with everything hold up inside you. It doesn’t do your marriage any good either. Plus unlike the television character in Parenthood, if you flatten the asshole in the supermarket, you will get arrested for assault. Even if the moron deserved it.
 
Elise is a parent of two youngmen with aspergers. She is all about advocacy and support for those with special needs. Elise has been a volunteer child advocate in her community for over ten years and is a certified college transition coach for those with aspergers. Additionally, Elise is also a moderator on the on-line support group The Coffee Klatch, aka tck. TCK is a twitter based interactive support group made of up parents of special needs children for parents of special needs children. You can follow Elise through her blog Raising Aspergers’s Kids, http://asd2mom.blogspot.com, on twitter @aspergers2mom, on Facebook as “Elise Aspergers-twomom”. You can follow The Coffee Klatch @thecoffeeklatch and on their FaceBook page of the same name.
 
 
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One Response to “After The Diagnosis: Sadness or Terror?”

  1. I’m in touch with those emotions and hear you loud and clear. :-) I think we all have the same feelings as parents. For me, I always feel bad when I see the bumper stickers, “My child is an honor student at…” It almost seems unfair. But it doesn’t really matter. What matters is understanding your kids and loving them, even during difficult times. It’s about being their parent and sharing in everything they do and being with them. It always feels so good when you connect with other parents that “get” it. They’re going through the same thing and you can relate to everything. That’s when you don’t feel so alone. And finding that other very successful people struggled through life with disabilities and made it through okay. It gives you just enough hope to make it through the really hard times.

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