That moment when YOUR child becomes the 1 in the statistics

Post Reply New Topic

April 2, 2014

World Autism Awareness Day. #LIUB (Light It Up Blue). The Empire State Building turned blue. The Statue of Liberty turned blue. The Great Buddha of Hyogo turned blue. The Perth Council House turned blue. All around the world people swapped out their regular light bulbs in place of blue ones. Facebook profile pictures colorized blue. Children and adults alike wore blue clothing.

And our house turned blue. Because April 2, 2014 is the day that Thomas was diagnosed with Asperger’s Syndrome.

We’d always known Thomas was a little off. He was never the kid who made friends easily. He has trouble staying organized and completing tasks. He seems super smart but then fails tests. He would obsessively talk about the seemingly stupidest things for hours on end. He would talk to himself NONSTOP no matter the situation. He had trouble tying his shoes. He didn’t understand personal space issues. He has trouble figuring out if you are being literal or sarcastic. He was the kid all the other kids loved to pick on. The teachers all said he was great and doing fine, but we couldn’t accept that. Something was wrong with Thomas. We just couldn’t put our finger on it.

Frustrated at the lack of progress and the constant bullying at school, we finally decided to investigate. To find out what was wrong with him. To figure out what we needed to do as a family to support him. And although in the back of my mind I already knew what the answer would be, had already prepared to hear it, I’m still devastated.

Devastated by the What Ifs. What if he can’t go to college? What if he can’t manage high school? What if he spends his whole life living in my basement? What if he can’t hold down a job? Get married? Have children? What if I ignored the signs for far too long? What if he could have been helped more by earlier intervention? What if I had pursued testing at age 6 instead of age 13? What if I can’t get myself pulled back together to help him? What if I can’t cope with this? What if I fall apart?

And I’m devastated by the Hows. How do I support him? How do I accommodate his special needs while at the same time pushing him to reach his full potential? How do I restructure my life without disrupting his? How do I minimize the impact on my other child? How do I tell other people? How do I react to the “I told you sos” of the people who know him well, and the “bless your hearts” of the ones who mean well but don’t understand that I don’t need or want to hear that? How do I tell people who want to help that I have no idea how they can help?

And how in the world do I explain this to Thomas? He’s the one this affects the most. It’s his life. How do I help him figure out what this means? How do I help him tell his peers? How do I prepare him for the inevitable that many of his hopes and dreams for life are very likely not going to come to pass?

I just want to climb in my bed and bawl my eyes out. And stay there. And never come out. I just want this to be someone else’s problem. Someone else’s life. Someone else’s story.

But it’s not. It’s my problem. It’s my life. And it’s my story. And I’ve got to pick myself up, dust myself off, and get to work. The earth is still spinning on its axis today and that means I’ve got to keep going. I’ve got to learn how to advocate for my son. I’ve got to educate myself and my family on what he is and isn’t capable of. I’ve got to figure out how to battle a school system who sees him as a good, if a little odd, student who clearly doesn’t qualify for special ed. I’ve got to educate his 12 year old brother on what he can and can’t expect realistically from his older brother. I’ve got to change my parenting to figure out if it’s something that can be reasonably expected of him or it it’s something we need to learn to adapt to.

I have no idea how to get through this chapter of our lives. But I know throwing the book across the room is not the answer.

Take a look at our parenting index stickie thread. That will link you to other threads in our forum on a wide variety of topics. Including, no doubt, the topics that are of most immediate concern to you right now.

Diagnosis is a key. You know can access all sorts of information that will help you understand your son, as well as protocols for dealing with his issues.

I am curious, though: your post sounds more like a blog than a message board post. Did you write this for us or share something you have written for different reasons?

Welcome to WrongPlanet and best of luck on your journey with your amazing child.

Can't identify. Something in the OP doesn't sit right.

Our house didn't turn blue. It's still pale yellow and still needs repainting.

Our son didn't become "the 1 in the statistics," he stayed his own unique self.

As for the what ifs--surely this is a game that anyone of any neurology can play? What if I am killed in a car crash with my wife tomorrow? Will the kids make it through whatever happens next, etc.

Whoa! Reign that impulse in. His 12 year old brother has presumably been getting to know him and what he can do for 12 years, no?
Don't you need to figure out what is actually going on with Thomas before you start trying to define him for other people? Is there something about his brother that makes you think he can't see for himself what his brother is like?


On a need-to-know basis only. Then you can do it like this:


Did you know how to get through everything else?
Take it one day at a time. Be nice to each other. Try not to think of yourself as the victim of something devastating.

[Edited to make "my son has autism" into "my son is autistic" -- autism is not really a thing you have.]

Last edited by Adamantium on 03 Apr 2014, 2:24 pm, edited 1 time in total.

For the record, very few kids get to realize their hopes and dreams in life. But my ASD son actually has a better chance than most. He has focused interests and real talents in those areas. He's never bought into or echoed societal ideas about what he should want; he always created his own. I can't say if he'll ever get married (although he has dated) but, then again, he doesn't really care if he does (although I would like him to). Separate what you want from what they want - you'll both have a better chance if you do.

And then do what we do with all kids - in controlled and gentle ways, let them try, explore, and discover for themselves how their talents compare in the real world.

Last edited by DW_a_mom on 03 Apr 2014, 1:22 pm, edited 1 time in total.

The fact that this sounds like something you would find as an article on Autism Speaks?

(sorry, OP, but your writing style is definitely not that of a typical new poster here. Which may or may not mean anything; no one should be judged by their writing style. But in the interest of easing communication on both sides, I decided I should point it out).

Seems overly dramatic. Your son has Asperger's, not cancer.

OK, glad it was not just me. The post sounds like an essay.

Too much to address so I don't know how to respond constructively. The questions seemed rhetorical. I will wait to see if the OP responds with something more concrete.

I completely agree. And I am new. I mean, I am new to the forum and new to Autism. And my kid (my first born, the one with Autism) is new to the world (he's 2.5 yo). So I am also still considered a new mom.

And with all of this being said, I have to say, OP is being overly dramatic. Wow!
Please do calm down, this is not healthy or warranted.

Criss, nothing has changed in your life except that you now have more information and access to help. It's not the end of the world, for Heaven's sake. None of us know what our future holds.
Likely Thomas has much more to tell you about autism than you him. And as far as telling him his hopes and dreams will never come true because he has autism, how do you know?
Chill out . . . enjoy your kid. We auties have a lot to offer.

I thought this was really well written too, but since my daughter was recently diagnosed at 13, I can understand her shock and her worries about the future. I had never suspected my daughter could be autistic and although it is a total relief to know what she has and be able to understand her better and get her some help, I find it very hard to change our lives to accomodate her after treating her a certain way for 13 years. And coming to terms with it, making decisions,filling out forms, finding schools and funding and all the stuff you need after an ASD diagnosis is very overwhelming.

I'm not a parent, but I'm curious as my Mom and I are very close and I know she still struggles with my autism (I'm 43.) Anyway, doesn't finding out the cause for your daughter's behaviour open new possibilities for dealing with it? Note, I'm not saying that she should now be given licence to do as she pleases (I wish,) but I would think new avenues for coping would present themselves.

Ann - it has helped in a lot of ways because I can finally read parenting books about why she does certain things, but she is smart enough to know that we need to accomodate her and I feel sometimes she uses the diagnosis to get me to do things that she was capable of doing before she knew she has aspergers. I also have a hard time with her twin because she doesn't realize that her biological age is often very different from her emotional age (her emotion regulation is at 2 years old).

I want to help my daughter and try very hard to keep her happy, but then her sister wants the same accomodations and it can get very exhausting. As a single mom, I have always counted on my children to help out around the house and since my son moved out, it is like pulling teeth to get my girls to do their 5 minutes of daily chores or their 30 minutes of chores on the weekend.

Knowing my daugher has autism doesn't stop her from being hard to deal with when she is screaming and ranting at us constantly or acting violent towards us. Thankfully, she is also very sweet and kindhearted and loving at times. Sometimes it feels like we are walking around trying not to set off a volcano and at other times she is so fun to be around and I find we have lots in common.

Yeah, my teens were traumatic for both my Mom and me. I was dreadful. Undiagnosed autism, depression, anxiety mixed with female adolescent hormones. Whoaaa! Difficult times.
It must be very interesting to have twins, one with autism and one without. Makes me wonder about genetics and stuff (which I won't dwell on because I don't understand it.)
But yeah, when someone's screaming and having a meltdown, things sour fast. Having had many a meltdown and I'm sure many more to come, I can only say that it has to be gone through, so try and make it as smooth as possible. Sensory stimulus (physical and auditory) go wild during a meltdown and my brain literally feels like its stuck in gear. The keys to getting through it (in my strategy) are: distance (from what is causing the reaction,) concentration on breathing and relaxation of muscles, being left alone, being able to cry freely, as little judgement afterward as possible both from myself and others (but the being left alone part is important because of this,) and the freedom to let my mind and body work through it. I don't know if that's helpful, but there it is.

I apologize that my writing style doesn't suit some of you. Shall I change the way I construct my sentences? Do I seem more genuine if I just hop on an internet forum and spew out random thoughts and comments without putting some sort of order to them?

Perhaps I should have spent more time reading threads before I posted, but I was under the impression that this was a forum for individuals to support one another. Perhaps you were all calm, cool, and collected a mere 24 hours after hearing the doctor tell you your child is autistic, but I am not. My way of coping was to reach out to a group of people who, having been through the same thing, might be able to relate to what I'm thinking and feeling right now. I suppose my hope was that they would be able to draw on their own experiences and be empathetic.

Of course I am "overly dramatic" right now. But I don't intend to STAY that way, hence the reason I googled "Aspergers resources" and found this site to begin with. Of course I know it's not the end of the world. But I felt like if I didn't get it out I was going to explode. I don't intend to tell Thomas any of MY concerns. I haven't even figured out how tell him ANYTHING yet. I'm sure he's picking up on the fact that mom is out of whack after meeting with the doctor at an appointment he was not invited to. I'm sure he's figured out that it has to be related to the 8+ hours of testing she just finished doing with him.

Maybe I should have just created a blog to work through my thoughts, or just written them all down in a journal, but I really think that we will benefit from the knowledge of others who have been dealing with it for longer than we have. From the experiences of other people who have walked down this road before us and learned how to assist without enabling. How to advocate without being overbearing.

Thank you for the feedback, both the kind and constructive and the abrasive. I may be new to all this, but I'm a quick study!

Criss, sorry if I'm abrasive (it's not the first time, but I mean well.) (And for the record, I think you write fine. I will note that the blue lights you referred to at the beginning of the post are a result of Autism Speaks, an organization which causes some heated discourse here.)

For what it's worth, I think you should talk to your son about how he feels about having autism, about what it means to him and what preconceptions he may have about the disorder. He probably has quite a lot to say, but can't figure out how to do it. If you can figure out where he's coming from on this, you may gain some new angles for yourself to deal with his behaviour. But, like I said, I'm not a parent.

This.

I mean maybe I'm misunderstanding you, but it sounds like what you're saying is you have a weird kid, and now you've got a name for his weirdness.

I'd suggest first getting rid of the idea that there's something *wrong* with him. Something deeply inconvenient and at times way aggravating, yes. But you're describing a nice, bright, aspergian-special-interest-obsessed kid who's maybe prone to getting bullied and doesn't pick up social cues easily. He'll live.

As for explaining, why don't you wait till explanations become necessary? Here's how I explained my ex to my daughter, who was getting impatient with him: "Okay, you remember (autistic mainstreamed kid from kindergarten)?" "Yeah." "And how he did XYZ?" "Yeah. Does boyfriend have autism?" "Well, it's a mild form of it, it's called Aspergers. Remember when he was doing MNOP at our house, and other thing on skype?" "Yeah." "A lot of people with Aspergers do that, and a lot also [symptoms]." "Oh. I thought he just liked to do that." "Well, maybe, but it's also pretty common with people who have Aspergers. I do some of that too." "Do you have it?" "Yeah, some." "Is that why you're not so good with people?" "Probably." Silence. "Do I have Aspergers?" "Nope, not as far as I can tell." "How do you know? You're not good with people." (laughs)

I think the conversation after that was about what supper would be.

It doesn't have to be an emergency, is what I'm saying. It sounds actually like potentially it's a bigger problem for you than it is for him -- that it really bothers you that he's socially "off".

eta: I wonder if the word "autistic" is just throwing you. If you've got some image of a very low-functioning kid, maybe nonverbal, then maybe that's a shock. But he's the same boy you've known all along. You just have a name now and a set of guesses as to how things might go for him, what might help him.

What I think it does mean is that you'll need to stand ready to help him in adulthood more than you might another child. Relationships and employment may be tougher for him than for his brother. That doesn't mean he's doomed, or that he won't do well. He may do very well in early adulthood and then just not be able to keep it up anymore in a very competitive world. But who knows? In any case -- you already know him. Don't let a word distract you from that.