I have been meaning to write this post for some time now. It is difficult , as was my last post. A lot of people won’t like it , especially some people who are embracing life with an autistic child. This is a vent , only a vent , about a few things that get under my skin in this new world of “parent to an autistic child” that I am in.

It is , again , about Oisin’s autism. Or, his Mixed Expressive Receptive Language Disorder with Sensory Integration Disorder with probable severe ADHD to be determined. Whatever , it all means “damaged” .

I have reached out to several groups , read several blogs by other moms with similar children , joined play groups for special kids . They are all great , don’t get me wrong. Everyone who is dealing with it should reach out. Here is my chief complaint though – the focus of it all. They focus on the why ( lets spend TONS of energy vilifying whatever did this to our child), they focus on the specialness of their child( which I do too, believe me) , they focus on new  treatments ,  they focus on IEPs , they focus on being warriors for their children. This is all very important , VERY important. But , something is missing.

Missing are the topics of grief , disappointment , resentment , severe fear of the future . These are completely normal feelings to have when your child is not ok by the modern sense of the word . This is the big skeleton in the closet when it comes to the support offered to parents of neuro atypical children.

They are champions ! They are parents of a special child! They wonder at all the amazing things their child can do ! They are there to welcome with open arms any parent of a newly diagnosed toddler , to show them how wonderful and unique their child is ! That is all true and positive attitudes are very important, but to be only optimistic and all embracing of the situation?

Bullshit.

That’s right , Bullshit. Sure you love your kids no matter what . I love my autistic son more than anything in this world except for my other two kids ..I love them equally.

But I am grieving. I am grieving over no T Ball ,not  hearing ” mommy I have a boo boo” , not knowing who his favorite super hero is , not yelling J-E-T-S Jets Jets Jets with me no matter how much they suck , not reading him a bedtime story because he is not interested and I may as well be reading in Russian , not having him care about Halloween , Christmas , The Easter Bunny .

Yes , he is getting better , yes they all tell me he will do all those things and he will talk and listen and I have to work to believe them , and  I do..but he is not doing it now dammit , and it hurts. He will only be 3 once!I am grieving a toddlerhood my one child  never had. I challenge ANYONE to look me in the eye and tell me the wonders of an unfolding normal human being from the ages of birth through age 4 is not an amazing and wonderful thing..a time full of 3 year olds asking “why” questions , child like observations and wonderful spins on things , talking like Elmer Fudd. Talking. Learning to talk. Tell me any of those things are not a precious part of childhood that are very important to you all that have had children. I had it with Molly ..I know what I have missed with my much loved 1st born son. I look back at his toddler years as “before and after”. Before I knew something was wrong , and after. The “after ” part dragged on and on..from nagging feelings of “uh uh” to realizing something was up , to realizing it was not just going away with therapy , to realizing he had autism. I don’t have the same feel good memories I have with Molly. The way at age 2 she could make fun of her Uncle’s Dublin accent. The way she was THERE. I missed that with Oisin. It was nagging concern , then apprehension , then dread . Now I am in the acceptance phase , I suppose.

I want to tell parents it is ok to talk about grief even though their child’s future may be very hopeful , it is ok to have grief even though other kids are worse off.It is ok to express grief over your child’s condition..and it is NOT selfish to feel bad for the things you as a mother are missing out on. People will say “oh you only feel bad for yourself..look at him ( points to your child who is spinning wheels on his matchbox car ) HE is happy ” They make you feel selfish for caring about the impact it all has on YOU and for lamenting the lack of regular toddlerhood nuances , the exchanges between a normal 2 year old and his mother..that are not to be.

I mean , don’t be consumed by it. That WOULD be selfish. But to not acknowledge that you as a parent feel the pang of things YOU will miss out on is repressive and unhealthy as well. It is ok to grieve those things. It does not mean you do not accept your child . It is normal to be a little sad over it , for yourself. From a biological standpoint and an instinctual standpoint procreating is a self fulfilling act . It would be abnormal not to feel shorted yourself sometimes.

When a parent with the new news that their child is on the spectrum walks in to some room to be greeted by others who have dealt with it , here is a piece of advice to the mentors. Stop shitting rainbows and butterflies right out the shoot . Yes , be positive , Yes , it is a relief and it is great to hear the success stories of diagnosis reversal , kids who went to college despite being autistic , yes , look at Temple Grandin , yes Einstein did not talk until he 4 .

But please , acknowledge their grief and disappointment. You all feel it from time to time , you know you do.And you know the fear and the whirl of emotions..most negative , that accompany finally getting THE diagnosis after months and sometimes years of watching the obvious slowly and painfully unfold starting with an “aloof” 8 week old baby that you had very high aspirations for. You know it. Start from there , let it be heard , give it the floor. Rip it down to its foundation , then rebuild from there.

I am one to face fears . Face them down , acknowledge the worse case scenario. Let the demons out so you can deal. Anyone who has a 3 year old with this new diagnosis can tell you their fears – that their child will only graduate to assisted living as an adult . Will always need care, even after you , their parents , are dead and gone . And that is a real possibility . Very real , despite Dr Temple Grandin’s revolution of cow slaughter methods.

I think parents would be better able to face these fears , to vent , to let it all out , to adequately prepare for what life may bring with their child , if everyone was not so afraid to not be SO optimistic in front of others.

Which brings me to my next beef.

Did you know you can screw your child out of good assisted living if you leave them a good inheritance? Not much unlike nursing home situations.” Look backs” count in aid for the mentally disabled who are left behind too.  People need to talk about the dark stuff too.For the sake of mental and planning productivity. Geez , you plan for college from PreK up. But plan for something important like your autistic child existing happily in secure settings once you are six feet under ? Nah , they’ll be fine . They are special. The WORLD will embrace them and care for them just like you do because their light shines so bright…( voice trailing off here) .

It is important to talk about the real possibility of pit falls in the future. . Nobody talks about it though. You hint at them taking a bus to bag groceries until they are 65 and people will tell you a million success stories of artists and inventors and engineers .It is flat out “planning negligence”. It will rear its head in society one day when this explosion of ASD kids grow up. And there is an explosion. Look around you. The biggest group being affected are the new generation of toddlers. I have sent 5 moms to my favorite Developmental Pediatrician because their kids who were 3 or near 3 were still non verbal.  5. Think about that. Something is going on. It may be evolution , it may environmental ..it is important to find out , but there are other issues at hand.They need MORE therapy than they typically get in an IEP . More than they typically get in Early Intervention.

I was just talking to a therapist for the blind that works for Early Intervention. She said most of her blind clients even at the Pre K level have parents who are organizing and saving and learning about how to preserve their child’s future after they die and leave that blind child behind. Maybe I just haven’t been to the right groups or playdates , but the autism parents seem to only focus on finding answers and cures ..they seem sure some breakthrough therapy or drug or chelation something or another will come up soon and their kids will be functioning adults , a little quirky maybe , maybe a mad scientist…this is all GREAT. But you also have to plan for other what ifs. And there are plenty. Not one therapist , developmental pediatrician ,or neurologist has asked me about future planning. If my son had Downs , it would have discussed at length already.  Why? Because autism these days does not have a definite end  of growth and progress until near adulthood ( some kids become independent at the high school level even) , needing help for the rest of their lives is a “what if” that is pushed out of the hopeful parent’s mind for a long time. Therefore , the planning is all too often forgotten. Even best case scenario , if they are super high functioning or have Asperbergers  ..they are at much greater risk of not being able to hold a job , not being able to have a good marriage ,   falling into substance abuse. They need planning by you as their parent , for when you are gone.

Yet nobody talks about that in the future tense.

I remember when Oisin was first admitted to EI at age 2 because of red flags. I thought , well , they can fix autism now with ABA therapy and stuff and most are just quirky and super smart and we all knew that super smart weird kid in class well I bet he was autistic  they just didn’t know it then and now he works for NASA….. ( voice trailing off again) .

I thought that way , because that is the prevailing picture of the new face of autism. And I bet they are right 90% of the time. I hope they are ! But the lack of planning that I see from my autism parenting peers when it comes to the possibility that their kids will NOT be independent is staggering . I can tell you what happens to autistic kids who lose their parents and they no longer have them looking out for them. They often eventually join the throngs of mentally disabled homeless. YOU NEED TO PLAN FOR THIS STUFF AHEAD OF TIME EVEN IF EVERYONE TELLS YOU YOUR 3 YEAR OLD HAS A GREAT PROGNOSIS. Prognosis is not a sure thing. It is hope. Have it by all means , but not to the point where you shut out negative thoughts because HEY we all know about the power of positive thinking.

So if your child is on the spectrum , even if they have the best prognosis a child on the spectrum can have , do your child a favor. In addition to all the other research we parents of autistic children do ( I do TONS) , take a look at Planned Lifetime Advocacy Network . That will get you started. Squeeze it in to your dietary and therapy research. It is OK to plan for the what ifs.

I do think my son has a great prognosis and chances are he will learn to somewhat function normally in society , go to regular school , go to college , build a whole new type of airplane or something. .

But I have fears , I have resentment , I have disappointment , I have grief..and when people who have been there before you only talk about happy feely buzz words like “special” and say things like “there would be no art if not for autism” , they are making you feel like the most miserable pessimistic parent on the face of the earth. I want to scream sometimes ..and my favorite is ” oh , I would not change him if I could” ….I want to shout at them ” YEAH ,YOU WOULD CHANGE HIM IF YOU COULD ”

It is accurate and believable to say  you love them the way they are , you love them dearly , you embrace who they are , you will always love them and help them and give them everything they need , you find joy in the achievements even more because it is such an accomplishment . I genuinely feel those things about my son. I love him to death . I want him to be who he is. But this whole ” I would not change a thing” sentiment is crap. I would change a few things in a fucking heartbeat. I would change the fact that he can’t tell me what is making him so mad , what he wants , what he feels . I would change whatever wretched thing or condition caused this neurological damage . I would kick it to curb , take it out of his timeline  , step on it , light it on fire. I would love the opportunity to wave a wand and make my son normal. Who are these people who say these things that they would not “change them even if they could”?? How does that make other parents feel internally ? Gee , I suck , because I would change him if I could in a minute without hesitation.

People say stupid things , but for kind reasons .

Maybe I am totally wrong , and the other parents do feel this blessed and are genuinely super fucking ok with the situation. Maybe I am being pessimistic and grieving something I should not be grieving . I don’t know..I think the truth is if I paid a private practice psychiatrist to listen to my woes he would tell me the grief and disappointment and blinding fear is normal and the elation people express over getting a special child and thinking they got that special child because  “I am strong enough to handle it according to to the powers that be” is something people in denial say and feel.

I love my son. Here is a list of things that are true.

-I love him more than I love myself , that is why I want good things for him and that is why I am so grief stricken over his autism

-I feel bad for me , because I enjoy being a mother so much and I so desperately want to hear my son talk to me , to make ME feel good. What your child says to you is a barometer to moms on how well they are doing as a parent. When the words are missing there is so much uncertainty

-I would not trade my son for any other boy in the world , but I would change him if I could

-sometimes in the morning when everyone is still sleeping I daydream about him coming in and saying in a husky voice that only 3 year old boys have ” hey mom I want some pancakes” .  Then I cry .

– I watch my new baby boy with paranoia to look for signs in him too. I don’t think I can go through this again. What if I leave Molly with 2 disabled brothers after I am gone? What will it mean to her life. Remember Molly?

-I am optimistic despite the tone of this post. It really is just a vent . Enough experts have told me he has the potential and the feel of a child that will break out in sentences. But I can’t be too optimistic because the let down is profound. I already went through it slowly when it became obvious he was not “just a late talker”

-I love him to bits and the best period of my life will be when he talks to me. He is not in his own world. We are fortunate there. I want to hear what he thinks about everything

-I flop back and forth from being optimistic , depressed over it , ok with it , proactive over it , angry over it. All in one day.

-and most importantly , he is due home on the bus in 20 minutes , and I can’t wait to hug him.