Asperger's From My New Husband's Perspective

I tried to convince my husband to do a guest blog post for me on his perspective of Asperger's and what it's like to marry someone who has a child on the autism spectrum.  He had never even heard of Asperger's or been around an autistic individual until he met my son.  I felt he could give some advice or pointers or something to help other step-parents coming into a situation with an autistic child.

The Murph didn't think it was such a good idea.  The conversation went something like this:

Me:  I want you to do a blog post about how you feel about Asperger's and how you've learned to deal with the Boy and his Asperger's and any pointers or advice you may have to contribute to help others.

Murph:  I have no advice or pointers to give anybody.  I don't even know how to deal with the Boy myself.  I STRUGGLE to deal with the Boy.  His personality is not so pleasant most of the time and I don't know how much of that is Asperger's.

Me:   I've told you most of it is because of his Asperger's and he's really NOT that bad!

Murph:  Yes, but I don't know how much of the meowing and biting and pulling your hair and following you around is Asperger's.  I don't think all Asperger's kids do that.  Not to mention at the wedding when we were trying to take pictures before the ceremony and he decided he was hungry and wouldn't leave you alone.

Me:  That was Asperger's.  He has no filter.  I should have made sure he ate something before I left to get my make up done.  (The Murph cringes at this because it was my wedding and the Boy is old enough and able to feed himself)

Murph:  I do see that there are varying degrees of Asperger's and autism and not everybody is the same.   Some are different than others.  I do see that.  When I first met you and you told me your son had Asperger's I didn't know what that was.  I told my sister-in-law that your son had Hamburgers or something and she said "Oh no!  You mean Asperger's!  That's what so and so has! ( so and so is a son of a cousin)"   All I could think was, oh no, because so and so was a strange, weird kid and I wouldn't even let the Girl get around him alone.  But like I said, he was different from the Boy.  Maybe the difference is medication or parenting or just other things he has besides Asperger's.  I will also say that whenever the Boy is around you that you change and not in a good way.  You change whenever he's around.    My only advice to people is that you really have to love the mother and then you will be able to put up with just about anything.  And I do mean ANYTHING!

Me:  I guess  I do change a little bit when he's around.   Just like you did on the wedding day the first time you had to deal with getting the Boy moving since I had already gone to get my make up done.  You looked stressed.

Murph:  I was just frustrated because I told him to get his tux on and we had to leave and he still wasn't ready to go and I had to get to the country club to get pictures and only had 15 minutes left.  Then he kept asking "Where's my mother?" over and over and when he finally saw you, he attached himself to you and decided he was starving to death and we were trying to get pictures done.

Me:  Well, that's me.  I get frustrated.  And he's in my personal space and I've been trying to teach him about personal space since he was about 4 or 5, but it still hasn't sunken in.  I get stressed when he's meowing and biting me and pulling my hair in my personal space.  When he has appointments that I have to get him to then it gets even more stressful.  I think you get it now.

And that's how the conversation went and that's about as close to a blog post as I can get from the Murph!

I will say that when I first met the Murph, I had very low expectations of his acceptance of the Boy.    I warned him more than once that he should think twice before he started dating me (he disagrees with this).

 I tried to explain to him that my son had Asperger's.  I tried to explain what life was like with a child who had Asperger's.  Even though at that point, the Boy was finishing up his Junior year of high school and things had become increasingly easier over the years, it was still stressful.

I didn't know if the Boy would be going away to college or staying home and going to a two year college.  I didn't know if he would even get into a four year college.  Heck, I didn't know if he was going to graduate from high school the next year.  I thought if he did go to a four year college that I might have to move with him because he would need me close by.

Things could have gone any number of ways.  That's the thing with autism.  You just don't know.  Things will get better, but then worse and then better again (you hope).  You think you've conquered something and then there's a backward slide.

I'm tough so I can handle it.  I didn't know how tough the Murph was though.

I've been happily surprised.

Back then the Murph assured me that he could handle whatever came our way.  That he would be there to back me up with whatever I had to do to help the Boy.  So far, we've been lucky and the Boy has taken off on his own and is doing well in a four year college and is living on campus.  He's doing better than I could ever have imagined.

I have the Murph to thank for that.  I could do it all on my own if I had to, but I'm glad I don't.   I did do it all on my own for several years as a single mom, but it sure is good to have a partner that is supportive.  I wish he could have been there with me through all the IEP meetings at the school and all those times I had to deal with the Boy's dad who seemed to be against me instead of for the Boy.

Or that time when the Boy was 10 and called me a "bitch" because I was trying to make him clean his room so I "threw" all his toys away and he didn't even care because he had paper clips and other random office supplies to play with.

I'm glad the Murph doesn't think the Boy is as weird as so and so, whoever so and so is!  And that he cares enough to know it's Asperger's not Hamburger's and that everyone on the spectrum is different and unique.

I did warn the Murph that I have a weird kid, bad cats and an obsessive triathlon habit, so he came in with his eyes wide open.  I even included that line in my wedding vows, although I changed "weird" to "teen-age" because I didn't want to give the Boy an excuse to act weirder than his normal weird.  He would've taken that and run with it.

Weird is the new normal for the Murph and personally I think he likes it better.

Don't Call My Son Stupid!

I apologize in advance for my vents, but when the Boy is home sometimes I need to vent.  This time it's not anything the Boy did at all.  For the small amount of time I've spent with him, he's been great.  I just wish he'd get back on a sleep during the night, stay awake during the day schedule.  What's bugging me now is the level of uneducated ignorance that exits in this world when it comes to people on the Autism spectrum.

Yesterday was a tough day.  I really wish people were more understanding of the Boy's many quirks and sometimes his argumentativeness that borders on rudeness.  Even knowing he has Asperger's doesn't seem to matter.  I still get hit with "it's not Asperger's, that's just an EXCUSE."  I guess if someone has a broken leg and can't walk then that's "just an excuse" too.  I am so sick of it I could scream!   Asperger's is a real problem and he has issues with social skills.  Get it!

I think the Boy is oblivious to these people and their ignorant attitudes, so I'm the only one banging my head against the wall so to speak.  It seems that the judgmental attitude should have ended when he got diagnosed with a very real problem.   You can look at him and see there's a problem.  Why be so ugly and mean about it?  

The social awkwardness slowly seemed to magnify as he became an adult.  I don't know how to help him with that just like I didn't know what to do when he was kid.  Now there are programs for autistic children that weren't there for him when he was that age.  One day I'm sure there will be programs for young adults that just aren't out there now.  He's ahead of the curve and that's not a good thing.

Today the Boy had an appointment with Dr. W, his psychiatrist.  Insurance does not cover any of it so we have to pay the entire bill.  The Boy missed his appointment before Christmas because he was at his dad's house and I couldn't get his dad to take him to the appointment.  I had forgotten about it until the day of the appointment and tried to cancel the appointment when I couldn't get in touch with the Boy and his dad wouldn't go home and wake him up.  Of course, I was charged for that missed visit as well as this one.  Fortunately, Dr. W only charged me half for the missed visit.   Does the Boy's dad help with any of this?  Heck no!  He can't even be bothered to take him to the appointment ever.

On the way home from the appointment, The Boy and I were talking about the Boy's college housing for next Fall.  This year he went from the dorm to an apartment right off campus.  This has been a lot more money than I thought it would be and the Boy is depending on his dad to help with rent.  The Boy said he asked his dad for the rent when he was over there for dinner the other night and his dad told him he didn't have the money.  Another lie!   

 The Boy had his friend W, there to witness this.  W's dad is totally involved in his son's college and pays for everything his scholarship doesn't pay for, including buying him a car and paying the insurance, etc.  It really hurts the Boy when he sees this and he then sees how his dad treats him.  There's nothing I can do to make his dad help out more except maybe take him to court which would cost me a lot of money and may not amount to anything.

The Boy knows he will have to go back into the dorm next year because he can't afford the apartment.  I just don't get it.  How does that man sleep at night?  We're not talking about that much money because the Boy's financial aid covers almost everything.  I just don't get it!

One more vent then I'll stop, I promise!

Please don't call my son stupid, especially when he may hear you.  Call me anything you want, but watch out when you talk about my son.  Anyone who calls a special needs person "stupid" is the lowest of the low.  Who's the real stupid one?

Not my son!

Bed Bugs

I was sound asleep last night when suddenly around 1:30 a.m. my cell phone started ringing from the kitchen.  It woke me up immediately.   My first thought was who the heck would be calling me at 1:30 in the morning.  My second thought was, it was probably The Boy because to someone who has their days and nights all mixed up, 1:30 in the morning is the same as 1:30 in the afternoon.  No difference to them.

I stumbled out of bed and into the kitchen to grab my phone.  Sure enough, it's The Boy calling from school.

I answered the phone a little concerned, but also aware of The Boy's mixed up day and night issues and his total lack of awareness for other people's need to sleep.  I was honestly half asleep when I answered the phone,  but I think our conversation went something like this....

Me:  Hello

The Boy:  Hey!

Me:  Are you okay??  It's 1:30 in the morning...

The Boy:  No, not really.  I'm really not okay...

Me:  (suddenly wide awake and starting to panic)  What is it??  What's wrong???

The Boy:  I think I've got bed bugs.  They are biting me.

Me:  Bed bugs????

The Boy:  Yes, and that's not all,  I've got acne really, really bad.  It's all over my chest.  You need to do something.  You need to do something NOW!

Me:  You think the bed bugs gave you acne???

The Boy:  No mom!  Two different things!  Two different things that don't have anything to do with the other.  Bed bugs and acne.  Somethings biting me.  You need to do something!

Me:  What am I suppose to do??  I'm 4 hours away.  It's almost 2 in the morning.  I've got bed bug/flea spray here but that's not going to do you any good there and we won't be down there until next week.  You need to do something before then.

For the next 30 minutes, at 2 a.m. in the morning, I had to explain to The Boy what to do.  He was clueless!

Number one was to call the landlord of his apartment and get them to do something about those bed bugs immediately!  Nasty!!  I have a feeling from the weird, cloroxy smell of the mattress when we moved him in that the apartment, landlord knew something about those bed bugs.

Number two is to go to the student health building and get treated for the acne.  Acne that I'm not so sure isn't really bed bug bites after googling pictures from the Internet.

I have a feeling that I'm going to have to give that apartment landlord a little call.  There's no excuse to put students through that.  They charge way too much for that.  The Boy was in a small, ugly, concrete dorm room last year that was less expensive, but had no bed bugs whatsoever.  This apartment has had one problem after another.  Toilet broken, microwave oven door broken, hot water heater not working...

They've had to call for one thing after another since they moved in a couple of weeks ago.

After getting off the phone with The Boy, I went back to bed, suddenly feeling kind of itchy from all the bed bug talk.  Cadence had gotten all hyper and chased Ed under the table while I was on the phone.  I had to discipline him.  So when I went back to bed he was all purry and in my face.

Then it started raining heavily, which means the roof by the fireplace started to leak, so I had to put a towel down.

By then The Murph had woken up and was wanting to know what was going on out there.   I told him that The Boy has bed bugs and acne.  At 2 in the morning.  The roof is leaking and Ed's hiding under the table scared.  Other than that, things are just great.

The Murph mumbled, "oh, is that all...".  He then rolled over and went back to sleep.

The Aspie Quiz

I found this quiz online one day while I was looking around for Asperger related information.  I took it just out of curiosity to see what my results would be.  Since Asperger's and Autism are known to have a genetic component, I wanted to know if I was an Aspie too.  It certainly seems like it some times when I have anxiety and trouble dealing with stress.  (although these things only happened after I was an adult - a parent to be exact)

Today I got the Boy to take the quiz.  He's been much more sociable and relaxed these past few days.  Not to mention awake during the day instead of only at night.  We were calling him the "vampire boy" for a while.  

If you want to take the Aspie Quiz just click here.  The scores are broken down into the different areas on the chart and it was very interesting to see all the results.

I took the quiz twice on different days.  This was my results the first time I took it.  The second time I took it, I deliberately tried to get a more "Aspie" score, but I still ended up neurotypical.  The Boy was quick to point out on my results how low my Intellectual score was.  He had a good laugh at at my low intellect!  I responded "Yes, but see how physical I am!"  If I were a cave man I could really hunt some buffalo.
                                      Results- Aspie score:  60 of 200

                                      neurotypical (non-autistic) score:  145 of 200

My Quiz Results =
Neurotypical

Here is the Boy's quiz results showing what we already know.  He's an Aspie.  He's also quite intellectual.  Maybe not such a good buffalo hunter though.

                                      Results- Aspie score 122 of 200
                                      neurotypical (non-autistic) score 83 of 200

The Boy's Results =
Aspie

It's a good thing we have Mexican restaurants nearby.  He and I consumed large quantities of this stuff the other day along with chips and salsa.  No buffalo.

Please share your scores in the comments if you decide to take the quiz.  Hopefully you will be more intellectual than I am.

Special Needs Ryan Gosling Friday!

It's Friday and time for Special needs Ryan Gosling.  Yea!  TGIF!  You can find more of these memes on Sunday Stillwell's blog over at Adventures in Extreme Parenthood.  

And wondering if he's doing this in preschool, what's high school going to be like?

I actually did get a call from the preschool once when The Boy was 4 years old.  He had locked horns with his new preschool teacher, who he didn't like much and was sent to the director's office.  The preschool director called me and told me I needed to come get him.  He was giving everybody trouble and had threatened to kick the door down.  

So thankful for Skype since The Boy is in college now!

This was so not like him.  It didn't take long to figure out that he was having trouble adjusting to the new teacher.  His original teacher left mid-year to become a missionary.   That wasn't a good year for The Boy.

This hasn't been a good week for me.  I had a feeling it wasn't going to be and tried to prepare myself mentally for it, but no matter how prepared you think you are, it's never easy when it happens.  Hope next week is better.

World Autism Awareness Day

The month of April is World Autism Awareness month and today kicks it off with World Autism Awareness Day.  I have spent most of the afternoon reading autism news, blogs, articles, etc., anything related to Autism/Asperger's awareness.  It is so good that there is starting to be more information and support for families with children on the autism spectrum.  It is clear, however, that we still have a long way to go.

The Boy wasn't officially diagnosed with Asperger's syndrome until he was in 8th grade, yet looking back, all the signs were there.  I had never even heard about Asperger's or knew anyone who had it until he was diagnosed with it.  I knew something was wrong, but something related to autism was not even considered.   The Boy's dad and family mostly blamed bad parenting for the Boy's problems.  Bad parenting by me, of course.  I guess they considered the Boy's dad a "great" parent, but if that was the case then why didn't he step up to the plate and "correct" me if I was such a bad parent.  Are mom's always to blame?  I have to admit that I even started blaming myself and thought that maybe I was doing something wrong.  I began wearing myself ragged trying to be a better parent.

 The Boy was 10 years old when I filed for divorce from his father.  At that point, I started taking The Boy to a child psychologist.  The Boy's dad and I were fighting so much that I thought it probably wasn't a bad idea to get him into counseling.  I had tried to get him into counseling months before filing for divorce.  That didn't end up well when the psychologist asked The Boy who he liked better his mom or his dad.  When The Boy told his dad this, his dad hit the roof.  I suggested that next appointment, The Boy's dad come and we could get to the bottom of why this question was asked.  Needless to say, The Boy's dad got ugly and accusatory and the psychologist didn't have a chance to explain.  I just wanted to disappear.  I never made another appointment with him.

The new psychologist was a female child psychologist recommended through the court system.  She was very good and did help me in some of the more immediate problems I had with The Boy, such as getting him to sleep in his own bed and help during the stress of the divorce.  What I will never, ever understand is why, why, why did she not once see that The Boy had signs of Asperger's?  We saw her once or twice a month for five years.  It wasn't until The Boy was diagnosed with ADD and he was having stomach problems and withdrawal issues from his meds that the school advised me to take him to a psychiatrist to help coordinate his ADD meds.  This man, who we saw approximately once every 6 months for less than two years when he diagnosed The Boy with Asperger's.  Finally the answer!

It's difficult thinking of all the lost years The Boy could have had specific help for his diagnosis!  He fell through the cracks for so many years despite the school knowing something was wrong, me knowing something was wrong, my friends and other parents knowing something was wrong, but nobody know what that thing was.  That thing called Asperger's.

After the diagnosis I cried.  I was so relieved.  The Boy was relieved.  I know it must be hard and a blow for families to learn their child has an autism spectrum disorder when they are toddlers, but take my word for it, it's a blessing to know and to take action early than to not know and not get the help they need.  The Boy had had IEP's and speech therapy, but the diagnosis made him eligible for so much more of the help he needed.  Best of all it took "behavioral problem" out of the picture.   As a mom, I knew my son was NOT a behavioral problem.  Don't even get me started on that one!

 It was still tough.  There were always some teachers who didn't want to accommodate and The Boy's dad still doesn't think there was any problem other than that I suck as a parent.  I am just so thankful the there is such a strong Autism/Asperger's community out there getting the word out.  I hope no other parent goes through what I did.  Even if The Boy had been diagnosed when he was a preschooler, there was very little out there to help him in this state.  Now we have Mitchell's Place, which really helped The Boy when he was first diagnosed.  He attended a summer camp there and went on to do the after school program his freshman year of school.  

This is the fifth year for the annual World Autism Awareness Day and I am thrilled.  I hope it continues and helps educate the public and get the support and funding for the families, children and adults who are faced with autism every day.  I feel inspired to do whatever I can do to help get the word out.  There's no time for blame, only for action.