TBT - What Might Have Been

Here is my version of Throw Back Thursday -- blog style!  (Or TBT-BS as I like to call it!)

This post originally appeared January 8, 2013 and it is still true today.

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.

Why the world revolves around Joe ...

The world revolves around Joe.  The world may not be aware of that yet, but it is definitely true.  For a kid who can be so helpful, he just cannot look at things from another person's point of view.  In that way he is a lot like a cat.

This morning Joe asks DH, "Do you know what the best time is to start a movie that Alan likes to watch start to finish?" 

From the other room I'm thinking, "Duh, right after he gets home from school." 

DH said, "I don't know.  What is the best time?" 

Joe's response?  "Right after he gets on the bus to go to school because then I can stop and start it whenever I want." 

Sigh.

As a family we tend to drink from Tervis Tumblers.  They allow us to keep track of whose drink is whose (since we all take them all over the house), leave very little marks on the furniture and allow for minimal spilling during the inevitable upset.  I usually use one of the lids like what is shown on the left (mainly because I prefer to use a straw) while Joe (and DH) tend to use the style on the right. 

When I came home from surgery, DH had washed my cup and was getting out a fresh one and grabbed one of the lids like is shown on the right but knowing I like straws, also got me a straw. 

Joe observed my cup last night at dinner and said, "You know you can drink out of those lids and you don't need a straw." 

Mom: "But I prefer using a straw." 

Joe: "But you don't need one."

Mom: "I know."  He just looked at me blankly.

Sigh.

Joe asked for me to make some hard boiled eggs this morning.  To be fair, he actually asked me to teach him how to make them.  As a family we don't eat a lot of eggs, except for Joe who usually eats two every day.  If left to his own devices, he would eat a half dozen eggs a day, but we set the limit early.  And once there is a rule, it is usually followed. 

DH had stopped at the store and picked up 18 eggs and we had about 6 in the refrigerator.  I told Joe we were going to make the 18 eggs into hard boiled eggs and save the others for whatever. 

Joe asks, "Like to cook other ways?"

Mom: "No, I was thinking more for if we need them for cooking other things."

Joe: "Like fried or scrambled eggs?"

Mom: "No, like a cake or pie or meatloaf or whatever."

Joe: "But I can still use them for fried or scrambled if I want those, right?"

Sigh. 

He's been trying to help out since my second surgery (I am doing much better, btw) and several times a day we hear about how Alan should have learned this or that by now.  I'll get right on that, kid.  After all, we haven't been trying to teach him those things for the last 15 years we've just been skating by.

The world does revolve around Joe.  We just haven't been able to inform the whole world.  I guess I better get on that, too ...

Miss me?

Miss me?? 

Alan -- oh so ready for the cast to be off!!

I have been blissfully absent from blogging for most of the last month.

Most of you probably haven't noticed.  Many of you probably don't care.  Some of you will probably tell me how much you've missed hearing about my antics with the boyz.  Yes, they've had them.  No, I haven't written about them.

My miniature greenhouse (made from a birdcage) is almost done!

Mainly I've been taking time for me. 

Julie. 

Not "Mom" and certainly not "Mom of special needs kiddos". 

A little roombox called "Tea for Two"

Just Julie.

I've been working out -- most weeks at least 3 days!  Considering I only had my surgery 10 weeks ago and the boot has only been off for about 6 weeks, I think that is pretty awesome.  Some days my foot still hurts.  I can't do more than a lunge or two before I have tears in my eyes.  I can't genuflect in church without hanging on to the end of the pew and looking like a klutzy idiot (oh, wait, I AM a klutz -- but let's not discuss the idiot part!!)

Since I tend to like working out first thing after Alan gets on the bus and that was when I usually blogged as well, that has probably been the single biggest contributing factor to my decreased blogging.

the tea cart

I've even lost 3-5 pounds (depending on the day) which is only a tiny fraction of what I probably need to lose (20) but at least my weight is headed in the right direction for the first time in a long time.

A little Southwestern themed roombox I made

I have also been working on my miniatures a lot and have actually finished two projects in the last two weeks and almost finished with my third.  Considering only about 3 weeks ago I was close to having a panic attack that I had too much started and would never finish anything, that is pretty impressive.

Climbing again ...

Alan also got his cast off last Thursday.  He (and we) were pretty miserable for the 24 hours following the procedure (he had severe nausea from the anesthesia and then didn't sleep much that night) but my happy child is back.  He has even done some tree climbing since the cast came off although I think in some ways he misses having the indestructible protection on his arm.

Fat cat

As for Joe, he is still volunteering three days a week and spouting his little gems. 


Diesel is still fat and happy.

Life at the Sparks house is back to normal -- whatever that is!!!!

"I'm Sorry"

I have heard so many times from special needs parents how much they despise the words "I'm sorry" when it comes to their children.  Well, I'm sorry, but I don't get that one.  What would you rather people say?  "Congratulations!"???

There isn't a person alive that thinks when they are pregnant "oh I hope I get a special needs child!"  But that doesn't mean we don't love them all the same.  Now there are amazing people out there that choose to adopt special needs children and all I can say is "Wow!  More power to you!"

But when it comes to a child you gave birth to or that you adopted not knowing their issues, I think "I'm sorry" is a fine thing to say.

A person that says "I'm sorry" isn't saying "I'm sorry that your child was born."  They are merely saying "I'm sorry you have these difficulties."  Some days, I feel sorry for myself, too!  Other days I am pretty thrilled that I don't have typical kids.

Usually when I hear "I'm sorry" it is because I am trying to get some form of accommodation (like no waiting at the doctor's office) so I just say "thank you" and move on.  Occasionally I hear it when I am catching up with an old friend and I am explaining why my 18 yo high school graduate is not looking at colleges.  Then I usually respond with some snarky comeback like "well at least I don't have the tuition payments you have!"

On the other hand I do get tired of people telling me what therapy to use or how I should parent.  I'm sorry, but live at my house for a week and then make your snarky comment about how unhealthy my child eats.  Do you honestly think I don't know that it is unhealthy?

So for all those parents out there that despise "I'm sorry", I'm sorry, I just don't get it.  There are a lot bigger issues out there.

Joe-isms

Joe comes out with the funniest observations on life.  Mostly I've just shared them on my Facebook page and with family, but I decided to collect as many as I could remember and put them in a blog.

I was dressed all in purple one day and Joe told me that I "looked like a plum."  Since he likes plums, I think it was a compliment, but it is always fun to try to translate the autistic mind.

He told me earlier this year that he hoped if he had kids that they were more like him and not like Alan because "Alan is just work, work, work, work!"

Joe took one look at this house (across the street from Alan's camp) and said, "That is really unsafe.  Alan could NOT live there."  (In case you can't tell from the picture, there is a second floor door that opens to a porch roof and there are no handrails.)

Once Joe's homeroom teacher had been out sick for several days.  When she saw Joe on her first morning back she said, "I really missed you, Joe!"  His response?  "Well I managed to do just fine without you."  Luckily, she laughed and he amended it, "Well, I mean, it is good to have you back, too."

One night when we had Chinese for dinner and my fortune was something like "Your house will always have peace."  Needless to say, this gave DH and I quite a chuckle.  When we stopped laughing, Joe says, "That will never happen!" in a very matter of fact voice.  Another night there was no fortune in my fortune cookie and Joe decided that meant I was "unfortunate".

A few weeks ago, when I mentioned to Joe that I had a stomachache, he asked me if I thought "I might be getting pregnant."  (At that moment?!?!)

When I had a minor fender bender less than a year after totaling my previous car, Joe wanted to know if the new car survived.  (No query on me, I guess he figured I was walking and talking so I must be fine.)  When I told him that yes the car would be fine, it just needed a little repair, his response was, "Good.  Because I thought you were going through cars awfully fast."

Most parents try to prepare their child for the world.  I think I might have to prepare the world for my child!

Some fantastic blogs

Some of you may have noticed that I haven't been blogging much of late.  Partially this is because life has just been a bit hectic and partially because I do not believe in writing if I don't have anything to say.  I do have about five posts started that I can't sit down and finish but ... someday!  That said, I've been reading some great blogs of late and I was thinking that this post of mine will just highlight a few of them.

One of the newest blogs I have added to my reading repertoire is Autism's Gadfly. This bloggist is a bit dry at times but unlike so many loud and outspoken autistic bloggers, he isn't thrilled with his autism and would "cure" it if such a thing became available.  He recently wrote Autism is Not a Disability but a Gift and a Superability?  I really think the "other" side of the primary autism debate is interesting to read.  So many autistics forget that many of the kiddos out there are not Aspies, but in fact severely autistic people who cannot communicate and are otherwise disabled by their autism.

Another new find is Live from the Wang and her post Ten Questions I WANT You To Ask About Autism.  While I don't agree with her answers 100% they are pretty funny and I liked number 10 so much it was almost worth the read just for that.  I also hate watching or reading "entertainment" about autism and had been thinking about a post on that very subject.  I might still do one ... someday!  I guess that brings my unfinished blog count to six ...

Another awesome blog is Love That Max.  I know a lot of my traffic has come from Ellen's weekly blog link up and I will be forever grateful for some of the wonderful friends I have made through her.  She recently did a post called What if William and Kate had a child with special needs?  It is definitely an interesting topic to ponder.

Then there is Kristi at Finding Ninee who so accurately summed up my opinions about righting a wrong.  There are no wrongs in this world. While I have been known to say that I wish I had stopped at one child because Alan so frequently overwhelms me, he is also my giggle box and cuddle bug and he has helped me to really appreciate how autism is truly a spectrum.  I would never right that "wrong". 

Over the years we have considered a service dog for Alan but came to the conclusion that it wasn't right for our family.  A great blog post by Jennifer Butler at Special Happens is Is a Service Dog Right for You? What to Consider Before Considering a Service Dog.  Reading through her checklist I know we made the right choice, but a second look at such a critical decision is never a bad thing.

And what would a list of favorite blogs be without Kerri at Undiagnosed but Okay?  Kerri really gets the almost magical connection we bloggists feel for so many "friends" that we have never met.

And that concludes my blog post which is basically just a summer reading list.  Happy reading!

Keeping things in perspective

We have ants in our kitchen.  It is gross.  I'm not talking a couple dozen ... I've killed several hundred (probably over a thousand) in the last two days.  But really, what does it matter?  My children, my husband and I are alive and healthy.

Most of you that follow other special needs blogs are aware of the struggles of the Leong family at Chasing Rainbows.  Kate (the bloggess mom) is almost always fantastically upbeat for the lot she has been dealt in life.  But right now with her older son fighting for his life and the doctors not even sure if there is any brain activity she is struggling.  She is actively begging for prayers so if you are at all religious, please take a moment to do just that.

But back to the ants, the last time we had them was several years ago and they were in the basement by the cat's food.  It was still gross, but it was the basement and it was the cat's food not ours.  This time they are in the kitchen.  I can't figure out where they are coming in but they are everywhere!  But no, this is not really a picture of our kitchen floor.

Tuesday morning Joe woke me up with, "Mom we've got ants in the kitchen!" and when I went in there I discovered them all over the floor near Alan's dropped food.  OK, I should sweep that up every night but he drops so much so often that even with sweeping twice a day (or more) there is usually food on our kitchen floor!

Then Tuesday afternoon I discovered them on the counter (grosser!) and swarming all over the cat's water bowl.  Poor Diesel!  I did my usual baby powder on every flat surface and they were still everywhere.

Then a friend suggested Terro Ant Killer and I was a lady on a mission.  I bought some of their bait stations yesterday and set them out and that got quite a few of them but not all.  Today I am going out to buy the stuff that actually kills them.

This morning Joe asked why I didn't just spray some bug spray.  I tried to explain to him that you can't spray it in a kitchen because of the food.  "Can't you just spray it everywhere else and not on the food?"  Um, it isn't quite that simple.

But while ants may be gross, they aren't life threatening.  And back to the poor Leong family, little 5 year old Gavin is fighting for his life.  I had read about Kate's struggles on Facebook and commented on FB and DH saw my comment and read her blog.  He normally only reads mine and the ones I specifically ask him to read, but he read enough of hers to really sympathize.

Then last night at bed he summed it up quite nicely, "It sure puts ants in perspective!"  Yep, it does.

Grateful for a Diagnosis

I never thought I would say this (let alone think it!) but I am so grateful today for my sons' diagnoses.  

Joe is taking a class on Sex Ed from a local company that specializes in special needs kiddos.  Most of their clients seem to have MR or something similar, but they are working to branch out into autism.  Joe has taken a couple of art classes there and liked them well enough but he was always the highest functioning kid there by far.  When they came out with the info on this class DH and I were all over it.  Special needs kids are much more likely to be sexually abused than their typical counterparts and Joe is so naive about things (and uninterested in talking about them) that we figured this was perfect.  As well, there is a young lady at his school with whom he is quite smitten and we figured before we let him actually "date" he should have a clue about was and wasn't appropriate.

The first two classes were relatively uneventful and didn't prompt him to want to discuss things at all.  Sigh.

Then last night a new student walked in and lo and behold it was Tina, a girl with whom Joe had gone to grade school and upon whom he used to have an enormous crush!  They had e-mailed a bit earlier in the calendar year and upon snooping through the e-mails I became even more convinced that this kid needed some boundaries.  She "broke up" with him in April and at first he was quite upset but then he seemed to get over it.  This fall he became smitten with Helen and we were thrilled.  Helen is a sweet girl and seems just Joe's speed and we always thought Tina was waaaaaaaaaaay over Joe's level.  

So Tina's mom called me last night to talk about the fact that both kids were in the same class and she told me a little bit about why she had enrolled Tina in the first place.  Yikes!  Tina was meeting guys at a local park after telling her parents she was going to church youth group and so her driving solo has been cut.  She was sexting and meeting guys in online chat rooms and several other dangerous behaviors.  But ... since she doesn't have a formal diagnosis (other than ADHD) she doesn't qualify for a lot of the services that they are now trying to get.  

The whole conversation made me so thrilled with some of the choices we had made for Joe over the years.  We opted to send him to a rather large public school with a lot of support instead of a small private school like Tina attended.  He has done the work program through school and has been accepted into the vocational job placement program upon graduation.  He has participated in a volunteer program for the last few summers and was told by one of the volunteer sites that they were likely interested in hiring him after next summer if he worked that hard again.  We hope to enroll him in the community college in the fall and have him take a couple of classes to hopefully improve his future employ-ability.   In general, his outlook looks good.  Maybe he doesn't have a scholarship like some of his typical peers and maybe he isn't even going to attend a four year college, but he is happy, mostly trustworthy and generally a good kid who will most likely be gainfully employed within a few months of graduation.   

Overall, his future looks so much brighter than Tina's mainly because of his diagnosis and the choices that we made that got him the support he needed when he needed it.  There but for the grace of God go I ...