My own Confessional, Cinco de Mayo edition (long)

Smuches4u · May 2011

As decieving as the title is, it's not a celebratory post.

I've thought it for a long while. I've been in denial for a long while. I've dismissed it for a long, long while.

I brought up my concerns with DH last night, sparked by a Nesties bravery in sharing an experience in CW. My heart broke when he admitted he's been thinking it too.

We both think DC may be on the spectrum.

I've been pushing it out of my mind because he is so verbal, so interactive, so emotionally connected.

Too many times I've called my son by my Autistic brothers name because he's displaying extremely similar behaviors.

Repeating words/phrases up to 20-30 times, sometimes singing them to himself or subconciously while he's playing alone. I've reasoned it away as a sort of stutter, but it's not, and I know it's not.

His organization of things is random, but very specific to him and when it's disrupted we get upset. The kind of upset that is screaming, kicking, hitting and what seems to us completely irrational for the event. Add to that his strength when these fits occurr, it's eerily like I've got my brother in minature form.

His memory. His insane memory. He retains details about things that the average person filters out because it's perifrial information, it's not important to the event that's being remembered. But he remembers and quizes me. Of course, I don't know what the heck he's talking about. Eventually he gives some detail that makes his memory relavent to me and every single time, he's right. And every single time I'm a little more frightened of what may be the reason.

Noise. F*ck you noise! You make my precious, outgoing, brave little boy cower as if he's been beaten and abused.

There's more. Much more. But all of it could be explained away. All of it, case by case, is nothing. It's what you get when you add them together that's heartbreaking. Add to that the theory that Autism can be hereditary.

I've been avoiding his well-check. Just emailed his Pedi for a phone appointment before we go. I had no idea and had been praying that DH wouldn't agree. Now that I know it's not just me, I can't ignore it.

Many many prayers to all the Momma's. Especially the ones who live this every day. Love to all. Comment if you wish.

dirtbikemom · May 2011

Sending you lots of HUGS!!!! I know that one of the hardest things is admitting it to yourself. I too believe it can be hereditary as my BIL shows the signs but MIL and even my DH refuse to admit that he might be on the spectrum. Getting DH on board is a huge thing and I too understand about the noise!!

Mrs_Shmoopie · May 2011

{{HUGS}}, J.

Lexi & Orion's Mommy · May 2011

hugs! big huge hugs!

Smuches4u · May 2011

Schedule and order of events is another big cause for upset.

I try to lay out a chunck of 3 or 4 events so he will be prepared for what's next or can gauge how long we will be at a certain task. If we vary at all, try to do step 3 before step 2 because the car route makes more sense that way, he becomes really upset. Like we're intentionally hurting him by changing course. Eventually he does understand, but it's not before a complete screaming tearfilled fit in the car seat.

Smuches4u · May 2011

and thank you. Nestie support is amazing stuff. Even from afar, from a virtual land it's wicked powerful and I cherish every little bit of it.

futrkingsley · May 2011

I'm sorry Smuches. You aren't alone.

DS is very very similar. He gets pissed if we don't go the the TJ's with the train mural. Which I've never noticed. He remembers events from over a year ago with a really strong clarity. It's amazing.

I've had concerns about him since he was a baby. I kept watching and waiting. And when he didn't talk on time, I thought it was going to be the thing that kickstarted everything. But it wasn't. All evaluators said it was just speech and not spectrum. But I still have my doubts. The one other tidbit that was tossed my way was that DS certainly has some sensory issues that impact his ability to function with normal every day things (hello hair washing and eating oh and sleeping). In our house no one agrees with me. Not DH (who doesn't read anything about normal development) nor my mom, but she's the type to brush everything under the rug when it suits her.

Sending you healing vibes and hope that you can find some help to help him sort through is day in a more even way.

lukaface · May 2011

Big, big hugs to you and your DH. Your sweet boy is lucky to have such caring and courageous parents. I hope your pedi appt goes well and you can get some of the positive answers and feedback.

Mrs.K&C · May 2011

futrkingsley:
I'm sorry Smuches. You aren't alone.

DS is very very similar. He gets pissed if we don't go the the TJ's with the train mural. Which I've never noticed. He remembers events from over a year ago with a really strong clarity. It's amazing.

I've had concerns about him since he was a baby. I kept watching and waiting. And when he didn't talk on time, I thought it was going to be the thing that kickstarted everything. But it wasn't. All evaluators said it was just speech and not spectrum. But I still have my doubts. The one other tidbit that was tossed my way was that DS certainly has some sensory issues that impact his ability to function with normal every day things (hello hair washing and eating oh and sleeping). In our house no one agrees with me. Not DH (who doesn't read anything about normal development) nor my mom, but she's the type to brush everything under the rug when it suits her.

Sending you healing vibes and hope that you can find some help to help him sort through is day in a more even way.

First, big hugs J. I hope you get the answers you are looking for.

Second, S - you know C and S have been so, so similar in so many respects. I've had my concerns about S as well, not just because of the verbal aspect but because she has tantrums that are unbelievable (hitting, kicking, screaming) and are set off by the most bizarre things. But she has been evaluated so many times between her ST and her PT, and everyone from the director down has said nope, not on the spectrum at all. And I do trust the experts. I think sometimes we read things and see similarities in our kids but there is so much more to it than a few specific behaviors. And hey, don't we all have some sensory issues at some point? Like if my co-worker doesn't stop popping her gum I think I'm going to throw myself on the floor and have a tantrum myself.

2bearichards · May 2011

Hugs!

mandy0505 · May 2011

::HuGz::: Keep your head up

StefandTodd · May 2011

Hugs to you.

KellyMRocks · May 2011

*hugs* to you Julia.

futrkingsley · May 2011

Mrs.K&C:
futrkingsley:

I'm sorry Smuches. You aren't alone.

DS is very very similar. He gets pissed if we don't go the the TJ's with the train mural. Which I've never noticed. He remembers events from over a year ago with a really strong clarity. It's amazing.

I've had concerns about him since he was a baby. I kept watching and waiting. And when he didn't talk on time, I thought it was going to be the thing that kickstarted everything. But it wasn't. All evaluators said it was just speech and not spectrum. But I still have my doubts. The one other tidbit that was tossed my way was that DS certainly has some sensory issues that impact his ability to function with normal every day things (hello hair washing and eating oh and sleeping). In our house no one agrees with me. Not DH (who doesn't read anything about normal development) nor my mom, but she's the type to brush everything under the rug when it suits her.

Sending you healing vibes and hope that you can find some help to help him sort through is day in a more even way.

First, big hugs J. I hope you get the answers you are looking for.

Second, S - you know C and S have been so, so similar in so many respects. I've had my concerns about S as well, not just because of the verbal aspect but because she has tantrums that are unbelievable (hitting, kicking, screaming) and are set off by the most bizarre things. But she has been evaluated so many times between her ST and her PT, and everyone from the director down has said nope, not on the spectrum at all. And I do trust the experts. I think sometimes we read things and see similarities in our kids but there is so much more to it than a few specific behaviors. And hey, don't we all have some sensory issues at some point? Like if my co-worker doesn't stop popping her gum I think I'm going to throw myself on the floor and have a tantrum myself.

Thanks K. I didn't mean to hijack J's thread, just to say that my kid is similar and I have similar concerns. And yes, to a point I trust experts. My biggest fear is that he was tested when he was so young and maybe it wasn't a full enough picture to be accurate.

As for the tantrums over random stuff, DS too does the hitting, kicking, screaming thing. Partly I figured it was sort of normal for the age/stage, even though I hate it and end up spending a lot of time talking about it with him. I'm still surprised sometimes by the level of rage in a child so young.

J, is your pedi your next step?

SweetieP · May 2011

Hugs sweetie. We're here for you if you need to talk/chat/vent/cry/etc.

SarahCee · May 2011

huge hugs to you. I hope that your pedi can help give you some answers.

Smuches4u · May 2011

Right now, Pedi is our FIRST step.

Having had limited experience with my brother over the years (tagged along to more than one evaluation with my single Mom), I know what to ask for, what we're in for, how to prepare DC.

kittylove · May 2011

(((HUGS))) Your history with your brother is going to serve you well in all of this. I read it some where that a ASD child's best asset is his/her parents. I know it is hard, we have many of the same concerns about DS and just decided against a developmantal pedi appt at this time.

mommy2jay · May 2011

(((huge hugs J)))

soon2Bkranz · May 2011

I am so sorry...I hope you can quickly get the answers you need.

HUGS

melgrady · May 2011

Lots of hugs!

MsPurple24 · May 2011

Big, huge, smooshy hugs to you. As a teacher, I've worked with many children on the spectrum and have loved them all ferociously (your comment about noise making him cower makes me teary because I have seen children do that and it will break your heart into a trillion pieces). I hope your appointment goes well- whatever that may mean- and I hope you'll keep us updated.

mythreesons03 · May 2011

lots of thoughts. I think today it is all about early intervention and commend so many mom's on this board for seeking it out, I have seen big differences in children who have benefited from that. Trust your gut.

MommySteph2009 · May 2011

You are a wonderful mom to have it looked into, sending you hugs.

mcunningham · May 2011

just wanted to send you another big hug!

Kellina71 · May 2011

Many (((HUGS))). I didn't see this until now. I will email you more soon.... Kids waking...

bunch · May 2011

HUGS

tri_bride05 · May 2011

Big hugs. My DC displays all of the symptoms you mentioned (minus the hereditary aspect) and I too have had a nagging doubt in my mind about the possibility of him being on the spectrum. Contacting the pedi is a great first step - mine didn't seem to think DC needed to be evaluated just yet, but sometimes I wonder.

dblhappiness · May 2011

Big hugs, J! I wanted to echo so many of the pps---it's a huge step and the hardest one to take in asking for help. I was in that same position for so long...in denial until a friend gently moved me along to get both of the boys assessed. Know that you have lots of support around you.