Alright, I caved.

Ah, ha!  I figured out how to add titles!  Blogging will one day make sense to me! :) 

I scheduled an appointment for Friday morning with a psychiatrist to discuss medication for the depression and anxiety.  Met a girl unexpectedly today at the nutrition club who was just diagnosed with Aspergers last week, and we have mirror-image cases.  She's been taking medication for her depression for some time now, and she said it has really helped with the anxiety as well.  As much as I dislike meds, this may be one of those times when it's really necessary.  I'm not going to be of much help to Ricky if I can't even manage myself.

With that said, we have our support group tonight.  I found one on Facebook that's for adult Aspies (I guess that's what people with Aspergers call themselves), so I joined it.  I think it'll be helpful.  I don't understand why there aren't any support groups for adults anywhere; they're all for parents of kids with autism, but you can't find ones for the adults.  Uhh, these kiddos grow up to be adults with autism; I know they don't just fall off the planet! 

I'm waiting to schedule an appointment with the Burkhart Center to discuss Ricky's case some more.  His communication skills are coming along, but now he's having issues with non-compliance, both at home and at school.  We'll see how that goes.

The Results Are In

I got my results back today.  Amongst a plethora of depressive and mood disorders, I have been officially diagnosed with Asperger's.  I figured it would come back as such, but it's still emotional.  Just like getting Ricky's diagnosis of autism; we knew that was the answer, but it didn't make it any less upsetting.

I'm not sure what my next step is, although the jerk doctor I went to (who is closing his practice at the end of this week!?!?) suggested I go for counseling and medication to deal with the anxiety and depression.  He gave me a list of doctors he would recommend.  I'm going to see what I can come up with on my own first.  Can't really afford doctors and pills right now, anyway.

Fairly positive, support responses so far.  Friends on Facebook have said, hey no problem, we still love you!  Ian has been supportive, and even let me order a couple of books that may be useful.  Can't wait to get them.  My sisters have been positive about it.  Mom, on the other hand, didn't answer my text when I told her (I was too upset at the time to "talk" to anyone, so I just sent texts to a few select people -- Ian's the only person I called), and when I chatted with her online later in the afternoon, she didn't mention it.  I figure if she's not going to say anything or ask anything, I'm not going to bring it up.  She can avoid and deny it all she wants; I need to find ways to cope and move on.

Dad doesn't know, unless they've looked at Facebook, but I didn't tell him or my step-mom that I was getting tested.  Their response to Ricky has been "he'll outgrow it."  I don't have time for that nonsense.

My head has been throbbing all day, so I'm going to call it early night.  Ricky won't stay in bed anyway, so I think he's about to get in trouble.  We did get a 5-word sentence out of him today, though -- Ian was trying to put Vicks on his stuffy nose, and Ricky told him "stop it, leave me alone."  Hey, progress is progress, right?!

Lack of Patience

*sigh*

Ok, I took a little break there to try and calm down.  I'm a little better, but it's been almost 2 hours since I talked to the office, and still no email.  I'm sure he didn't have it ready for email format, if he was planning on meeting with me instead, but I'm still annoyed it's not here.  All I can guess at this point is that there is something in the results that is serious/important.  Maybe it shows that I am autistic, and he didn't want to drop that on me through email.  It wouldn't surprise me, though.

I'm sure he's going to tell me I have depression issues, but that's nothing new.  I know that.  He tried telling me at my consultation that he thinks I have ADHD.  I doubt that.  He wanted to put me on medication for depression then, and seemed annoyed when I told him meds were not an option.  I'm done with chemical drugs unless absolutely nothing else helps.  None of the RX antidepressants I've ever taken have many difference, I see no reason to try another one.  My Relax Now tablets work just fine.  Yes, I still get freaked out and overreact to stuff, but my anxiety levels are at least halfway tolerable.

I feel bad for freaking out on the office manager.  That's how I react when things don't go as planned.  If I end up going in on Tuesday, I'll be sure to apologize to her.  I was really kind of a bitch.  I don't handle changes well. :(

I'm running out the door to go to our support group for Ricky.  I'm sure they'll all be excited to hear that he learned to fly a kite today all by himself.  He had a lot of fun.  I have to remember to keep things in perspective and not let things get me so riled up.  Easier said than done, or it wouldn't be such an issue.

Communication!!!!

I feel like crying.  Today was going so well!  The kids did really well at the park, and they even learned how to fly kites!  I was in a great mood, all was well.

Then I get a call from the doctor's office.  I've been waiting for over a month now to get the results of my autism testing.  They told me when I finished the testing that it would take about a month, and then the psychologist would type up the resulting diagnosis and email it to me.  If I wanted to discuss it, I could make an appointment then.

So, I've been manically checking my email several times a day, waiting for this email.  Granted, they said about a month, and it's only been 5 days over, but still!  Nothing there.  I was going to call and check with the office first thing Monday morning, but I decided that would be obnoxious, and then the kids are out of school for Spring Break, so I didn't want to waste time away from them.  So I've been stewing in anticipation.

Alright, so, they call me today, and I'm at the park with the kids, actually getting ready to leave.  It's windy outside, so I know I won't be able to hear the phone, so I want til I get in the car to check the message and call them back.  The message I get tells me I need to call back and schedule an appointment to discuss my results!  Ugh, WHAT!?  I've been waiting on an email; what's this appointment nonsense??

I try calling the office back immediately, and several times over the next 20 minutes on my way home, and after I get home.  No answer.  So I finally listen to the recording, and it tells me to leave a message, because the office manager is not in the office after 3pm.  Uuuhhh, she CALLED me at 3:20 -- why would you call someone and leave them a message to call you back, if you KNOW that you're not going to answer the phone because it's after hours!?!?!  So I left a fairly tacky message expressing my frustration with 1) not getting the email I had been expecting, 2) not knowing why I needed an appointment, and 3) with getting a message asking me to call back when no one is going to answer.

Interestingly enough, the office manager called me back about 3 minutes after I left the message.  So, apparently, she IS in the office, and has just been ignoring my repeated phone calls.  She tells me that it depends on the results of the testing as to whether or not they will email the results or schedule an appointment, and that the doctor wants to meet with me.  Doesn't have an appointment open until next week. Seriously?!?  You tell me I'll get results in about a month, then want me to be ok with it really being 6 weeks because you decided NOT to email me?  So I schedule for Tuesday, but let her know that I'm really frustrated and upset about it because I've been checking for this email.  She never really apologizes, but that's probably for the best, because I wouldn't have believed her anyway.

We hang up, then she calls me back like 2 minutes later; tells me she talked to the doctor, and he's ok with just sending me an email if I want that, or I can keep the appointment and discuss it with him then.  Really?  After I just freaked out about not getting an email and having to make an appointment, you want to offer me a choice?  So I tell her to go ahead and ask him to email it to me, and I'll keep the appointment for Tuesday in case I have any questions for him.  If not, I'll call and cancel it.

Now I'm stuck, still waiting on an email, when I know they have the results already.  Maddening!  Expectations, people!  If they prefer to see what the results are before emailing, then tell me that!  Don't just say "email," then change it to "well, it just depends."  UUGGHH!!  Now I'll be staring at the email screen, refreshing it to see if I've gotten anything yet.  With my luck, he'll wait until tomorrow or Friday to decide to email it.  Makes me want to just go to the office and ask them to print it and hand it to me.

Spa Night for Autism!

Exciting things in the near future!  My nutrition club is hosting an Autism Awareness Spa Party on April 5, and we will be donating part of the cover charge and profits to a local autism research group with the university in town.  I just sent out the invitation for it on Facebook (we're waiting on the letters/flyers to finish being copied), and I already have 10 people who RSVPed for it!  We're sending letters out to all of the school districts in our region, and I'll be sending letters to different businesses and offices throughout town as well.  We're taking donations for the whole month, and we'll donate everything at the university's annual autism walk at the end of the month.  Response so far is wonderful!  Can't wait to see what happens as we get closer to time, and more people have been invited.  So thankful to have such wonderful, accepting people in my life at such a difficult, trying time.  God is good!

Unsupported Flapping

New development today with Ricky.  Today, he started complaining that his hand hurt (he's not entirely verbal, so all I got was "ouch," tears, and his little left hand shaking and tense).  I couldn't find anything wrong, and he couldn't tell me if something had happened.  He started flapping his left hand first, crying and saying "ouch."  When I picked him up from school, he wanted me to hold that hand, so I don't think he'd injured it somewhere.  This flapping lasted for about 5 minutes and spread to both hands.  Nothing happened that triggered this, at least not that I could figure out.  He eventually calmed down, but his left hand and arm stayed fairly tense.  We got home, and he started again, saying "ouch," flapping his hands, and not letting us hold his hand to look at it.  He kept telling us "don't hit me" when we tried to take his hand.  My husband said there was nothing wrong, that he probably just had a hand cramp.  He said he used to get hand cramps all the time and had to shake his hands to work it out.  Fairly random for this to start right now; something was hurting/bothering him, and I have no idea what it was, or how to get him to tell me so I can help.  Makes you feel pretty useless.

I'm really stressing out this week.  We had a support goup meeting last night, which was the best yet, and I asked Ian to go with me.  He went, but it didn't help anything.  He fought me for most of the testing period, even through ECI, insisting that nothing was going on with Ricky and he was a perfectly normal little boy.  He didn't support me in having the school do testing, even though they were seeing the same concerns I was, and it took the school recommending that we move Ricky from pre-k to the PPCD room (which we did) for him to accept that "maybe" something was up. Even when they asked to start doing evaluations to see what the issue was, he kept saying that he didn't feel the testing was necessary, Ricky "would talk when  he's ready."  He did go to ARDs with me, but he didn't participate very much.

When we got his diagnosis of autism PDD-NOS, it's like he accepted he was wrong, but then decided that since I had been right all along, I could just handle everything.  This includes trying to educate ourselves on autism, seek out support and resources, and just dealing with day-to-day events.  When I suggest something, the response is "whatever you think is best."  It's incredibly frustrating!!! 

Yesterday, I told him that we had a support group meeting (like we do EVERY Wednesday), and asked if he was going to come with us.  I've been going for the last several weeks, and he's only gone with me once before (where he refused to participate and made me feel very uncomfortable and embarrassed.) He told me he was pretty exhausted, so he would just stay home.  I guilt-tripped him into agreeing to come by telling him that I feel like I'm being left to deal with everything on me, and that I really needed to know that he was going to help and support me.  He came home from work, and just sighed and moped around, jumping on the kids to finish eating dinner so we could leave, etc.  I told him that he could just stay home since he didn't want to go, but he said he wanted to go and be supportive and help, but it didn't sound genuine.

He came with us, but again didn't really participate.  It made me really uncomfortable wanting to ask questions and talk  to the other parents who were there because he just sat with his arms crossed and leaned back in his chair like it was a waste of his time.  I know his family doesn't acknowledge/recognize any kind of issue (alcoholism, mental health issues such as bipolar {which Ian has been diagnosed with}, relationship issues, etc), but this is HIS son we're talking about, and I shouldn't have to be doing this on my own.

Even when I told him that I had been unofficially diagnosed and wanted an official evaluation for autism, he told me that I didn't really need one because he thought I was fine, but if I felt I needed it, that was fine.  He'd love me just the same regardless of the results.  I know that sounds sweet on the surface, but shouldn't he love me regardless, anyway, without making it sound like an official diagnosis is something that could possibly be a reason for NOT loving me?!?  Don't get me wrong; he's a great father and provider, a wonderful husband.  But on this issue, he's been painfully stand-offish and it's not making anything better.

I'm probably just stressing out, but I tend to do that and make things worse.  My anxiety levels are really high tonight, and I'm finding myself feeling more and more overwhelmed and depressed as the days go by.  Tomorrow marks 4 weeks, a month, since I got my testing done.  They told me the results would take about a month to get in, and they would email them to me (so much for meeting with a person to give such results!); I can schedule an appointment to discuss them later if I want.  I've been manically checking my email every time my phone indicates a new message, and nothing is there from the office.  That's not helping my anxiety, and it's probably making it worse.  *sigh* I think it's time for bed and relaxation.  Hopefully whatever was causing Ricky to start flapping today is no longer bothering him, and with some rest, I'll feel better tomorrow.

The "R" Word

So I saw a lot of posts of Facebook today about this Spread the Word to End the Word day.  I wasn't sure what it was, so I checked into it.  Basically, it's a campaign to get people to realize and understand that using the r-word (retarded, for those of you who may not have instinctively figured it out) to describe people, events, actions, things, etc. that we don't like is not acceptable.  It's sad, but in the 21st century, we still have to tell people it's not nice to call names and make fun of people.

Actually, I had this exact thing happen at a business training/meeting just a few weeks ago, in front of several hundred people.  Our speaker was explaining how easy it is to work our business (Herbalife, as a shameless plug for myself) and how he couldn't believe that there are people who had asked him how he remembered to take his tablets 3 times a day.  I'll own up -- I forget to take my tablets sometimes, and for this very training, I had filled my tablet box with everything I needed for the day that very morning, and then left it on the kitchen counter when I left the house.  IT HAPPENS -- we're only human.

Anyway, he went on to say that when he had these people come up to him and say "Man, how do you remember to take your tablets 3 times a day?", his response is as follows:

(In a tone mimicking and mocking a special needs person and tapping his wrist against his chest as he speaks) "Man, how do you remember to take your tablets 3 times a day?"  Then he says, normal tone, "Really, really?!?  What, are you mental?  It's really not that difficult."

I was horrified to hear that coming from someone high up in our organization, who up to this point I had enjoyed listening to speak on several occasions and with whom I had had no issue.  The audience was mostly quiet, but there were a few laughs around me.  Since my little man is autistic and currently has the language skills of a 2-yo (he's almost 5), to have this man make fun of someone who has a comprehension issue, whether the issue be mental retardation, Downs Syndrome, autism, or whatever, was sickening.  I had to leave the assembly hall before I lost it and did something I would regret (like telling him off in front of those several hundreds of people).  I debated about 20 minutes as to whether or not I would leave; I just couldn't enjoy the rest of the training.  I finally decided to stay since there wasn't much left to the training, and there was another speaker I wanted to hear.  It was difficult and unpleasant, but I paid for my ticket, and I wasn't going to let him rob me of that remaining training.

I talked to a friend who is also in the business, but who wasn't able to come to the training.  She asked how things were, and so I told her -- things were great, until the above mentioned.  Now, I used to be a teacher, and my friend here is still a teacher, so she was equally appalled.  She even found the man on Facebook and sent him an email about how his words were inappropriate and hurtful, and that he had offended someone in the audience.  Thanks, dear!  Smh.

Here's the response to her email:


Thank you for bringing that to my attention. I feel awful that hurt this lady's feelings and I would be more than willing to apologize. I was trying to make a point, but I can understand how that may have hurt her feelings. Hopefully she is able to not take offense so she will not be held back by it.
Sorry about that.


Ok, I'm not sure what "point" he was trying to make, but did he really just turn it around at the end and suggest that the problem was with ME being too sensitive?  That I'm allowing myself to be "held back" by expecting that grown adults, in a professional, business setting, behave like grown adults in a professional, business setting, and NOT use such insulting, degrading, inappropriate examples to make some obscure point???

Sincere apology?  I'm not convinced.  Perhaps, but not convinced.

So, to those of you out there who may be reading this, the r-word definitely has no place in our society. If something is stupid or ridiculous, just say it's stupid or ridiculous.  Equating that "something" to a person with mental challenges is just offensive.  If something is "r", then we don't typically treat it with any kind of respect or consideration; is that how people with special needs should be, and should be EXPECTED, to be treated??

Here's the Facebook link for a group who is encouraging social change in this regard - go check 'em out!  http://www.facebook.com/EndtheWord

Venting

I just decided to start this blog tonight as a way to vent.  My son Aleric was diagnosed with autism in January of this year, and we're all trying to learn as much as we can so we can help him.  It's been a struggle trying to understand him.  He has mild autism (PDD-NOS) so when I've tried talking to other autism moms, I get the feeling that since he is not classic and is verbal (although very delayed in his speech/language skills), we don't really fit in.  Nothing like feeling left out by other autistics!

He actually meets all of the criteria for classic autism, but he does so well in so many other areas that the school psychologist who did his testing didn't feel comfortable calling it autism; we went with PDD-NOS instead, which is just a milder form of autism, so why not just call it what it is??  My understanding is that when the DSM-V is released later this year, Rhett's, Asperger's, and PDD-NOS are all going to be grouped under autism anyway, without any differentiation.  I'm not sure how I feel about that; classification-wise, I suppose that makes it easier, but it certainly makes it more difficult to narrow down and address specific issues.  But what do I know?

I'm actually waiting on a diagnosis myself; in researching autism, I came across Asperger's, and it really seems to describe my entire life.  I spoke to several different professionals in the school district, and upon their recommendation, I went for evaluation.  The school district spec ed chairman unofficially diagnosed me with Asperger's, and referred me to a psychologist should I want something more definitive.  Did the testing, and was told results would take about a month to come back in.  Last Friday marked the end of week 3.  I'm really hoping to get something back soon.  It's really difficult to address an issue when you don't know what it is.

I wonder if that's why I seem to relate more to my son.  I seem to understand why he does things like he does, and I'm more patient with him than with his older sister.  And this was before his diagnosis.  It's like he makes sense to me, while she is the little social butterfly I feel sick just thinking about being.

I've been reading some other autism blogs from parents, and I've seen and read some horrifying things.  Apparently, we have been very lucky with Ricky's placement and treatment at school; I fear changing schools next year!  I pray for those parents and children, and I pray for me and mine.  Autism is difficult and confusing enough without schools, teachers, other kids, and ignorant people making it worse!

On the upside, my husband found this article on one of his tech blog pages.  Feel free to share it!  I think it is most interesting:

http://arstechnica.com/gaming/2013/03/auti-sim-lets-you-experience-the-horror-of-sensory-overload/