Monday, January 28, 2013

Jumping out of my skin

 I had an allergic reaction to some "all natural" medicine I took to remove a few skin tags.  It started on Saturday and we ended up coming home from our date early because I was itching.  I took all the Benadryl we had in the house between then and this morning and decided that I HAD to see a doctor today.

I am now on steroids and a prescription strength antihistamine so I should be feeling better, right?  Not yet.  Today has actually been the worst day so far but I have high hopes that I will turn the corner soon.  I literally feel like I could (and would love to) jump out of my skin.

I was just reading another blog that was about sensory overload in an adult autistic woman.  Is this what my boys feel like every day?  Maybe not itchy per se, but just completely unable to focus on anything (including this blog which is liable to be short) because of the sensory overload? 

DH got home and I booked to work on my hobbies because I was hoping to distract myself from this hellacious sensory overload.  Wow.  It is a tough life for these kiddos.

Things that make you go, "huh?"

Saturday, January 26, 2013

Date Nights and Privacy

Lest you get confused by the title, I do not plan to give private details about our date night.  This blog covers two separate topics.

Date Night:
Tonight is our monthly date night.  Thank goodness.  I've actually had a pretty good month other than a root canal but just getting out with the hubby is such a treat.

Most times we go to a movie but as we are a bit on movie overload we are going to go out to dinner and then either go and listen to some music or watch a game on TV.  But it really doesn't matter what we do, what is important is that we make time to be together.  It probably doesn't happen naturally in a typical family either.  But some months we really have to work to make sure we get a night to ourselves. 

As I said in What Might Have Been, DH and I have a pretty good relationship.  I would say it is 50/50 but that isn't really the case.  Some days it is 60/40 favoring me and some days it is 70/30 favoring him or .... well, you get the idea.  That is how we make it work.  At least our boys are not involved in a lot of extracurricular activities.  Most evenings after the boys are in bed (and thank goodness they are good sleepers!!!) are for just the two of us.  That said, there is still something wonderful about going out and not worrying about whose turn it is to bathe Alan or who needs to cut up his apple or stop him from jumping off our bed and shaking the whole floor or .... well, once again, you get the idea.

Tonight we are planning to go out, have a little fun and pretend we don't have two autistic kids.  Tell me you aren't jealous!!

Last night we watched the movie Julie and Julia.  For those who do not know the plot line, it is based on the true story of Julie Powell who decided to write a blog while cooking through Julia Child's entire cookbook in a year.  I have started my blog since I last saw the movie, so it was especially entertaining to watch the interactions between Julie and her husband Eric.  Probably my favorite exchange:

Eric:  I am not a saint.
Julie:  Oh yes you are!
Eric:  No, I'm not!  And it makes me feel like an asshole every time you say it.  (pause)  And do NOT write about this in your blog!

DH frequently tells me "don't put this on Facebook!"  Usually it is when he is sick or something is up with the family but I don't necessarily want everyone knowing all our dirty laundry either.  I am a fairly open and sharing person, but some things about our relationship are not for the blog or Facebook or Google + ( I haven't started tweeting yet!)  Usually I try to share what I think is funny about our life or what has or hasn't worked with the boys in an effort to help other people.  The rest is just voyeurism.  

So if you are looking for a reality TV look into our life, you probably won't find it.  It doesn't mean I don't like sharing or having you share back.  I apparently actually have a few readers even if I don't have any followers yet!  Happy Saturday, folks!

Friday, January 25, 2013

Joe is Destined for "Hoarders"

I have to confess I do not watch TV especially reality TV but I do not live in a bubble so I am at least aware of the show Hoarders.  Of course, I also know what a hoarder is since I live with one.

For background, I keep some things but I also pitch, donate or sell a LOT!  I really do not see a need to save baby toys or every craft the kids ever made.  I also try to get rid of books I know I will never read again or DVDs we will never watch again.  I will confess that pictures are a huge weakness of mine but I have even been known to throw away pictures.

So keeping this in mind, why am I so convinced that Joe is destined for Hoarders?

When Joe was in elementary school he was very into what he called "crafts".  Of course sometimes his craft was nothing more than writing a word or a phrase on a piece of scrap paper and cutting it out to show to people.  He would then pile the little scraps of paper on the dresser in his room.  About every two weeks I would go up there when he was in school and throw away two thirds of the crafts off the top of his dresser.  The first time I did this I thought he would get angry with me, but he didn't even notice.  He also labeled lots of things.  We used to buy tape by the case at Sams and DH would bring home scrap paper from work by the box.  He built some amazing things out of paper, string and tape!

This was also a time when he would tell stories over and over and over and over again making very slight changes.  For example, he might tell the story of the gingerbread man, but change it to a gingerbread snowman and then wonder why DH and I did not want to listen.  He would do this so often, DH and I got very adept at pretending to listen.  We both felt bad and yet it was so exhausting to have his chattering at us for hours on end saying nothing really new. 

During this time we were carpooling to private school and the other student we carpooled with was Tina, an adorable little gal with ADHD.  We used to say they were perfectly suited for each other because while Joe would tell the same story 15 times in a row, Tina would appear to be listening attentively because she couldn't remember the last 14 times because of her ADHD.  We later discovered that Abilify made Joe very OCD in this way and after we took him off that medication he improved remarkably.

One year shortly after Joe went off the Abilify, Alan started back to school before Joe after winter break so I told Joe we were going to clean up his room.  I figured now that he no longer needed to make and keep the goofy little crafts he would be a bit more willing to clean up his space.  And while he was willing, the experience was quite an eye opener!!

I found:
  • hair toys that were not mine (he had picked them up from parking lots and playgrounds) 
  • used sucker sticks (eww!)
  • about a half dozen flashlights, rulers, old batteries, and tape measures
  • the wrappers from bandaids
  • toys that Alan played with but Joe decided to keep in his room so that Alan could NOT access
  • a set of little toys like you buy for party favors that we had never purchased for him (shoplifted?)
  • one of DH's old pay stubs
  • a key to our safe deposit box
Yikes!  It has now been four years since the massive room clean up and while all the  boxes are still there with their cute little labels and contents intact, he is still a hoarder.  He saves every card, letter and ticket he can.  Here is what his room looks like now.

So while this picture doesn't look too bad, I do have to share the story that brought about this particular blog entry.

Joe loves running errands for us.  He is so sweet that way.  He will tell me "that's what I'm here for!"  So one day last week I sent him to the supermarket with some cash and the request that he buy milk and animal crackers.  He comes home and asks if I want the receipt.  It was cash so I tell him "no" and then he says he is going to go put it upstairs in his card box.  Huh?  I can see wanting to save ticket stubs and cards, but why in the world would he EVER want to look at a cash receipt from the time he went to the store for mom and got milk and animal crackers?!?!

Hoarders here we come!

Monday, January 14, 2013

Picky Eaters

While I'm sure every parent thinks they have picky eaters, I strongly suspect (and would probably be willing to bet upwards of $100) that Alan tops 99% of your children!

Many kids on the spectrum are on limited diets -- the most common of which is the gluten free-casein free (no wheat or milk products) diet.  We had Alan tested for wheat and milk allergies when we tried the biomedical treatments and the results were that he was moderately allergic to milk but not at all allergic to wheat.  So we tried to eliminate milk from his diet.  The only problem with that was that milk was the only source of protein in his entire diet.  We tried rice and soy and he wouldn't drink them.  He has never let us put flavoring of any sort in his milk so we couldn't even try to hide the flavor in chocolate milk.  Score:  Alan 1, Parents 0

We next tried to eliminate lactose from his diet.  This did work.  Dairy Ease or Lactaid both taste close enough to regular milk that we can get him to drink those with relative ease.  This seemed to end his chronic (albeit intermittent) diarrhea.  Alan 1, Parents 1

We took him to "picky eaters" food class near home.  This was at a local organization that was specifically for children with autism.  He lasted two classes before the OT asked us to please not bring him back.  Alan 2, Parents 1

Next we tried taking him to a local OT center that specializes in sensory problems and has several people that deal specifically with broadening a child's palette.  The entire center has supposedly done wonders for so many local kids.  We had three different OTs work with Alan for almost a year (driving 20-30 minutes each way) and all they managed was to get him to touch certain undesired foods to his tongue.  He would not go the further step of holding the food in his mouth and they (somewhat reluctantly) admitted defeat.  Alan 3, Parents 1

"So what does he drink?" you might ask.  If left to his own devices he would only drink soda.  Sigh.  So we give him a small cup of soda and an equal sized cup of lactose free milk.  He usually drinks the soda and the milk sits on the table until he wants more soda and then he will finally drink the milk.  Sigh.  I am not sure who wins in this one so we will keep the score the same.  Alan 3, Parents 1

"So what does he eat?" you might ask.  Basically we give him four foods at a time.  
  • a favorite (either Oreo cookies, a Poptart with the edges broken off or a cereal bar which we had to stop giving him when we finally figured out that the only kind he would eat were Cinnamon Toast Crunch milk and cereal bars and that was causing problems)
  • a fruit -- usually apples but occasionally he will let us give him purple seedless grapes (no green or even red)
  • a bowl of something -- white cheddar or cheese popcorn, corn puffs, rice cakes (cheddar or ranch only) Cocoa Puffs or Honey Nut Cheerios
  • animal crackers
And that is it.  He eats those same things all day, every day and has for the last 2-3 years.  There is no protein in his diet other than the milk.  We started including the animal crackers simply as a "break food".  He would eat the favorite food until he was as wide as he is tall so we added the animal crackers on to the plate so he would be forced to eat something he doesn't really like to slow him down or provide a break.  Again, I'm not sure who wins that round so we will call it a tie.  Alan 3, Parents 1

What about when we go out to eat?  He will eat French fries and he will drink soda and that is it.  Alan 4, Parents 1

What about vitamins or supplements?  We had him on Juice Plus for several years.  He took the gummies quite willingly for a long time.  Then he started pushing them to the back of his throat and gagging himself with them and we had to take him off them.  Luckily we did have a wonderful SLP a few years ago that taught him how to swallow pills.  In fact, he is the best in the family now at swallowing pills.  He will put his entire fist of medicine in his mouth and then chug a glass of water and they all go down.  Another tie.  Alan 4, Parents 1

Several experts in the field have told me that no child will starve themselves to death and that is probably true.  However, when the alternative is to have a knock down, drag out fight with an incredibly stubborn young man who can make the whole house miserable -- is it really so awful that he eats popcorn for breakfast?

Thursday, January 10, 2013

The Perks of Special Needs Kids

Many people ask me "what is autism?" or "what causes autism?"  If I knew I would be a millionaire!  That said, here is one of the best answers I've seen in a long time.

What is Autism? by Autism Speaks 

I do love my boys but I love them in spite of their autism not because of it.  

That said, there are perks to having two special needs kids.  

  • I do not worry about them getting anyone pregnant!  
  • I don't worry about them being out late at night.  Most of the time Joe wants to be home and in bed by 9 pm.  Of course, this is mainly because of the medication he takes which makes him sleepy.  
  • I don't have to worry about alcohol until age 21 or illegal drugs -- Joe is way too much of a rule follower for that.  
  • They don't need the latest clothes, games, or electronics. 
  • They want me around (OK, sometimes this isn't a perk, but my friends with typical kids assure me it IS unusual!)
  • We get to have family dinners every night because they aren't running to a half a dozen (or more) weekly teams or activities.  Of course, as I mentioned in one of my other posts, dinners with Alan are anything but restful! 
I guess there are pros and cons.  Like a rainbow ... lights and darks ... favorite colors and least favorite ... 

Tuesday, January 8, 2013

What Might Have Been

Most of the time I do not have an inferiority complex about staying home.  I have a college degree and I always thought I would go back to work in my chosen field after Alan was in school.  That said, both DH and I really wanted one of us to stay home when the boys were young.  As I had worked fewer years than DH and made less money there was never any debate about which of us would stay home.  I have never felt that DH looks down on me for staying home.  On the contrary, he has always been very supportive and occasionally jealous.  Sometimes I get jealous that he "gets" to go to work because the boys can stress me out but other days, I realize I am lucky because I get to work on my hobbies or go out to lunch with friends or whatever.  So overall we have a good balance, I think.

Then something happens ... in this case my Dad invited me to join LinkedIn.  This is a professional network and as I am not working in a profession I resisted for a long time. Then a fellow hobbyist invited me to join her professional network and I accepted.  So naturally I was curious as to what had happened to my fellow classmates.  OK, now I have a bit of an inferiority complex.  Actually it is less that than the jealousy of how my life might have been.  If I hadn't had two special needs kids would I now be manager of this or senior director of that?  Maybe.  But I might also be divorced as the boys' problems have definitely brought DH and I much closer.  We really have to pull together at times in order to survive.

I read this blog recently (Autism Strains Yet Strengthens a Marriage) and totally understood it.  Yet while reading all the comments below the article I was appalled.  People actually made comments that hinted that these people were living in Hollywood.  They never said their marriage was perfect and nor would I say that about mine.  But the title alone says a lot.  Raising special needs children is a strain but if you work together it can also strengthen a marriage.  But (and this is huge) it takes two people who are committed to making it work.  It can be hard work but with a sense of humor and a heck of a lot of stubbornness, it can happen. 

Sometimes DH and I like to joke that we could never get divorced because we would spend way too much money in a custody battle -- only in our case we would be fighting to give custody to the other person!  A lot of marriages do end in divorce especially when there are special needs kids involved.  Sometimes one parent or the other cannot deal with the special needs and that is really unfortunate.  In general I think parenting is easier when you can tag team and that is even more critical when the children are high maintenance.  

So today while I might wonder what it would be like to be a big shot in the working world, I am also thankful that I don't have to be out there trying to do it all alone.

Thursday, January 3, 2013

My Pet Gorilla

When I gripe about Alan being home all I hear is "Enjoy it!  They grow up so fast!"  Well, I have some news for you parents of "typical" kids -- he doesn't!  Having Alan home is a lot like having a pet gorilla.  He is somewhat trainable, communicates basic wants and needs but weighs over 150 lbs and is hard to take in public.  

Don't get me wrong, I love my sons very much ... but they are EXHAUSTING!  My favorite day of the year is the first day of school.  When I think about the fact that Alan may never leave home, I want to cry!  When a baby is born you have so many hopes and dreams for him or her.  Those don't just vanish when you get a diagnosis!  

I would love to have family movie nights, but there are no movies that all four of us will watch.

I would love to be able to go to a restaurant and sit down with both my boys and relax and enjoy someone waiting on me.  Any idea what a restaurant is like with a pet gorilla?  We have to be ready to order as soon as the waiter first comes to the table because Alan can only wait so long.  We have to eat relatively quickly because frequently one of us has to take him out to the car while the other one stays behind with Joe and pays.

I would love for family vacations at the beach to be the way they were pre-kids -- lie in the sun, read a book, maybe take a nap, play in the waves.  Any ideas what vacation is like with my pet gorilla?  Last vacation he tried to climb off our third floor balcony on to the one below.  He gets in the ocean and just starts swimming for the horizon.  Yes, I am thrilled he is a good swimmer, but that doesn't mean I trust him to know when he is getting tired and come back so one of us has to swim out with him and convince him to come back in to the shallow water.  That fun task usually falls to DH because he is taller than me.  Forget flying with a pet gorilla -- what if he freaks out on the plane?  That means any trip must be within reasonable driving distance.

I already described what holidays are like with a pet gorilla.  But what about just getting together with friends?  We have some very good friends that do not have any children but do have dogs.  We usually cannot talk Joe into going over there because of the dogs.  On the other hand we almost never are invited to anyone else's house.  Nobody wants a pet gorilla to visit!

Many couples I know go away for weekends and have grandma and grandpa come and stay.  Uh, no.  Not too many 70-80 year olds can handle a pet gorilla!

What about going to church together?  Nope.  The last time all four of us went was Christmas of 1999.  That is a lot of separate services.

For Joe's graduation, for my niece's wedding, for an aunt's funeral ... you name it, we need a babysitter because my pet gorilla can not attend.  Heck, we have to get a babysitter for our monthly date nights.  We have two teenagers!  We should be able to just go out for our anniversary (or whatever) and leave the boys at home, but we can't.  So don't tell me that I should enjoy this time.  I love my boys but caring for a pet gorilla is very tiring and I am truly looking forward to the day he goes back to school!