22 September 2011

Finally Breaking the Silence

I've had the official answer since the end of June even though I knew before then what I've known for quite some time.  It's still really hard to talk about it because most people don't understand it.  And I'm not comfortable talking to people and saying, "Emi is deaf and Eriks has Asperger Syndrome."  Although this is a fact, I don't like labeling them or want it to define who they are.  However, I feel more and more like I have to explain the above to people all the time.

I'm sure my regular readers remember posts where I've talked about Eriks' behavior issues and trying to diagnose him.  Originally Dr L diagnosed him with mild AD/HD and then starting seeing behavior that made her change her mind.  So she got a bit more aggressive on testing him and even giving us a fairly intense questionnaire to answer.  When a bunch of our responses starting pointing in one direction she chose to give Eriks an IQ test.  But a different type of IQ test that wouldn't only gauge his intelligence level but also give answers to his behavior patterns.

To make a long story short, his diagnosis was handed down at the end of June.  Eriks has an autism spectrum disorder called Asperger Syndrome.  If you take the time to go to the link, especially if you know him, you will see that many of the behaviors typical of AS, Eriks exhibits.  The ones I see most are: lack of social and emotional empathy, impaired nonverbal behaviors such as eye contact (you can't get him to look at you when you are talking to him if you paid him), engaging in a long-winded and one-sided conversation (he can go on and on about things like you've got nothing better to do than listen to him), fixation on certain topics (he will ask you 10,000 questions about a Star Wars character you know nothing about until he gets the answer he wants to hear), repetitive motor behaviors (he has a pattern of tapping on his fingers over and over again with his thumbs that either starts with the thumbs hitting his pinkies and going to his index finger or vice versa.  It almost mimics a nervous twitch), sensory issues (needing to touch things constantly), light and sound sensitivity and sleep problems are the big ones.  He also has a very exaggerated laugh for things he thinks are absolutely hilarious but the majority of us would think are dull or dumb.

I'm glad that we finally have an answer but I am an OCD person, just ask Lane, and Eriks' AS conflicts with my OCD.  I've always lacked patience because of my OCD and when I am doing something, I don't deal with interruption/disruption well.  Eriks doesn't understand because of his lack of social & emotional skills that there are things that are more important than the story he is telling me.  Another common trait among AS is easy frustration and anger, especially when what the person with AS is trying to articulate is not being understood or there is something that takes priority over their story.  Eriks also gets frustrated when things don't come easily for him, especially school work.  He is very smart.  Based on his IQ test results, he has an IQ of 112, but Dr L also said that because of his lack of long term focus (also common among AS), she honestly thinks that his IQ is probably 118 or 120.  Eriks knows he is smart so he assumes everything needs to come easy.  If it doesn't he gets mad and calls himself dumb.  As a parent this is so hard for me to see because I know it is so untrue.  But you just can't make him understand that.  I easily get frustrated with Eriks because I expect him to understand rules and directions and there are times he just doesn't.

The hardest part is he is socially isolated, especially at school.  Not because he chooses it, but because kids just don't get him.  It breaks my heart when he gets in the car some days and says, "No one wanted to play with me today at recess."  I know sometimes it's because of his AS he expects kids to do what he's interested in and when they want him to join what they're doing and he's not interested then he gets left out and sees it as being rejected by his peers.  There are kids at school that I know really do like him, but probably as I said, just don't get him so in his little mind thinks that they don't like him.

I'm going to wrap this up soon but Dr L was telling us some of the questions on the IQ test she gave Eriks that is given to kids who likely have AS or autism spectrum disorders (ASD) and this one still makes me laugh.  She told us going into her testing of Eriks that you can't give kids you suspect are AS or ASD a typical IQ test the rest of us would take because their brains don't process the info the same way.  One of the questions showed a man sitting on a tree limb with a saw facing the tree getting ready to cut down the limb.  Kids without AS would answer the question by saying that if he cuts the limb off the tree the way he is sitting, he will fall with the limb.  Eriks answer was, and I can't quote it verbatim, was along the lines of, "He shouldn't cut the tree because the tree will die.  Trees make oxygen and people need oxygen to breath and stay alive.  So cutting the tree is very bad for the environment and for people."  Dr L said that was a VERY typical AS answer.  It wasn't so much that the guy would end up falling and hurting himself but what was more important was how he was damaging the tree.

One of the best treatments for AS is OT (occupational therapy).  It helps kids with AS become more sensitive to others.  I'm not 100% sure what other benefits it has because we're still trying to get the final report from Dr L's office and recommendations for specific types of OT.

Living with Eriks puts a lot of stress on me since he demands so much attention due to his AS.  He physically drains me daily.  I know a lot of who Eriks is isn't because he had a choice in it, but at times all the time, I don't understand why he's refuses to accept my answers or argues with me.  He has it in his mindset that he can make his own rules.  He doesn't think before he does things, also a common AS symptom and disruptive to my OCD ways.  He'll get on his bike and head to a neighbor kids house before he would ask permission or even say, "I'm getting on my bike and going to so-and-so's house."  This goes back to the social insensitivity to others. This has happened several times when he's gone out to play in the backyard and I peek out the window to check on him and he's not there.  I go out and call for him but there's no answer and see the open gate and know he's wandering the neighborhood.  I have gone into a panic not knowing where he is because it's difficult for me to drag Emi all over the neighborhood looking for him.  It's scary and I don't wish this for anyone.

OK, I could probably write pages and pages about this so I need to save some for later as the OCD me tries to deal with understanding and learning to deal with Eriks and AS.  Besides what I've read about AS, I have no clue as to how to be a parent to a child with AS.  Someone recommended a book to me written by another mother of a child with AS.  I need to get my hands on it.

It's going to be a long journey for us as we learn how to deal with Eriks' behaviors and I hope that those who know him will begin to understand him better now that the news is out in the open.

21 September 2011

Coming or Going???

Yeah, I haven't figured it out either.  I have been a bad blogger because my life is utter chaos right now and I'm hoping to have it back under control in a few weeks.

It all started when Eriks went back to school about a month ago.  After we got him in school we were in a feverous pitch to get Emi where she needed to be.  That did not come easy.  Although I spent a few years of my K-12 schooling in public schools, I can clearly see why my parents chose private schools when they could and why Lane and I from the start decided we wanted our kids in private schools.  I'm going to condense this as best as I can.  We found out when Indiana.School for the Deaf started classes and went directly to them to get Emi registered for their Pre-K program because we found out that there is no program like what she had in GA in any of the county schools.  We were told by I.S.D. that we had to have permission from our school system to send her there.  Seriously???  I was beyond ticked off.  So we set up a conference with Westfield.Washington Schools to discuss what would best meet Emi's needs even though I knew exactly what she needed.  We spent nearly 90 minutes going back and forth.  The school system was convinced they could accommodate Emi even though they couldn't guarantee the intense speech therapy she needed nor was there anyone who could sign to her.  If it weren't for her BCA (bone-conductive aid) she would be completely deaf.  There are times where she will be unable to wear it - bathing, swimming, etc and she will need ASL for communication.  Lane and I couldn't get that across to the school system.  They were so in the mindset that if she has a hearing aid now, she's fine and needs to be in a regular classroom.  We held firm and said that what they had to offer Emi was not good enough.  They finally let us have our way.  It was frustrating and infuriating.  I am not happy with our school system at all and thankful Eriks is in a private school.  I pray that Emi never has to go to a public school in our school system so long as we live in this house.  Anyhow, Emi finally started school on Monday and loves it!  It's amazing that just a few days of signing and speech again gives her the motivation to start signing and talking again.  Not to say she wasn't doing it at all.  But she loves school and has wanted to go back all summer.  I know she misses Jenna, Karen and Lauren so much, but is enjoying her new teacher.

I have gone through medical h-e-l-l trying to set up specialists for myself.  As much as I liked the cardiologist and nurse practitioner at Emory, I hated Emory itself.  I wouldn't recommend anyone seek medical services there at all.  I'm sure there are many wonderful Dr's there, but the support staff and administration stinks!  I needed more test strips for a machine I use to check my blood.  Similar to a glucose meter but it's to check the thickness of my blood.  My CHD followers will understand INR levels.  The clinic there would not approve more test strips since I no longer lived in the area even though until I see the new cardiologist, I'm still a patient there.  I could choose to travel there, but I'm not going to.  I called my new cardio's office and explained the situation and we're working on getting it taken care of.  So very, very thankful.  It has definitely been stress I don't need.  I was in tears over this last week.  If I don't check it every 4 weeks I could be putting myself at risk for a stroke or a bleed.

Lane's crazy busy with school leaving me dealing with pretty much everything.  This is so not what I signed up for but the 1st year of law school is the hardest.  We had the water heater replaced today.  It's the 3rd one this 13 yr old house has had.  Why the previous owners didn't have an expandable water heater before, we have no idea.  Thankfully most of it was covered under the home warranty we insisted upon when we bought the house.  Our fridge broke last week.  Yeah, after 2 months the fridge went out.  Repair guy came out Monday and yesterday to replace one of the 3 motherboards that control it and it's not a motherboard issue.  It's an internal issue that probably occurred during manufacturing.  So now I'm waiting on Sam$ung to approve replacement even though the fridge is under warranty.  Meanwhile I'm going to the store almost daily because it's not in fridge/freezer in the garage.  Thank gawd for the backup or I would've lost a lot of groceries.  I have always loved my Sam$ung electronics and appliances but this really bites.  It's a brand new model they recently rolled out too!

When it rains, it pours!!!

I know there's more stuff that I should talk about but I'm out of time.  Too much to do and kids need to be picked up from school in just over an hour.

Hopefully I'll be back soon with some photos, etc.
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