Posts

Posted on

ISO A New Best Friend

ISO  Best friend, must have a great sense of humor, compassion, be intuitive and know how to “take it to the grave”.  Preferably a woman, with at least one child, bonus if the child has special needs, such as autism, extra bonus if said child is a young adult.

She must be able to differentiate between venting and literal meaning in regards to husband ranting.  If I say “I want to kill my husband” she needs to know weather to hand me bowl of ice cream, or to start Googling “How to get blood  out of the carpet without fading the color.”

She needs to be able cheer with me when my autistic child reaches a long overdo milestone, and not get grossed out when I talk about some of the not so pleasantries that come with being an autism mom.

She needs to be able to look at me and know that I NEED to get out of the house and have a girls day, because the overwhelming black cloud that follows me around, is getting so close that it’s starting to block out the sun. Or that I need  her to just bring her hubby and kids over with a board game and snacks for a communal gathering.

She cannot be judgmental, especially about the condition of my house if she drops in unexpectedly, or about my weight.  However, she needs to motivate me by saying  things such as “Your house smells great,  I think it’s the smell of the fabric softener lofting through the air, from the heaping pile of laundry on the couch, waiting to be folded.” and “Come on, get your sneakers on, I feel like a 2 mile walk n talk.”

She needs to be able to read between the lines, when I say things like “Mary’s daughter just had a baby,  Mary is now a Grandma!”  and know that what I am really saying is “How lucky Mary is, I envy her, I will never be a grandmother.”

She needs to be able to blurt out the lines to a movie or sing a bit of a song that pops into her head as it relates to our conversation.  Bonus if she can join in as I do it.

She needs to be able to get along with my family, and mix well with the white collars, blue collars and rednecks.

Above all, she needs to know that most of this information that I share with her, has to stay hidden in the room that I have created, because no one on the “outside” can ever know… they just wouldn’t understand.

This position is open until filled,  compensation will be matched accordingly.  Serious Inquiries only.

~ASM

Posted on

Dear New Person working with my son

Dear New Person working with my son,

I just thought I would share a few things with you as you begin working with my child.

I hope you are a kind, loving and firm person.  I hope that you are creative and imaginative. I hope that you see outside of the box, but also see inside of the box that my son is in.

I hope that you have some kind of background and knowledge about autism, but not enough to make you an “expert”.  I don’t care that you have 3 degrees in “Autism Spectrum Disorders” and that your parents had a special needs daycare for 15 years (but you never worked with an autistic child).

That doesn’t mean that you know what is best for MY CHILD. My son, is not a case in a book that you studied, he is not the kid that your parents babysat.  My son is an individual, one of a kind, no one like him kinda guy. (as are all autistic people)

Most of all, I hope that you have what it takes to be such a huge part of my son’s daily life.  You see, I am and always will be his #1.  But you will need to be able to fill in as the runner up.  He needs to like you, TRUST you, rely on you, respect you and bond with you.

So here is what you need to know,  my son is a very happy young man, he loves his music, watches, planes, trains, Clifford the Big Red Dog, Scooby Doo and pictures of his favorite DVD’s.  Do not take these away from him…use them as tools.

He loves food, but if he has a day were he doesn’t eat for you, that’s okay…he will make up for it at home.  Because of his love of food, he needs to be kept active.  He can’t be allowed to sit and do nothing all day.

He understands 99% of what you say, and if you allow him to, he will manipulate you with affection or aggression.  This is where you need to be firm and gently push through any of his attempts to distract you.  He is a sweetheart and a flirt, and he knows how to use this to “sweet talk” you into letting him off easy.

He is smarter than we give him credit for…he can figure out how to make things work, either by pushing buttons, or by kissing your cheek until you melt from the sweetness and give in.

Although he doesn’t speak, if you pay close attention, you can figure out what he is trying to say., he can be very cleaver when trying to communicate with you.

With that all said, I hope that you and Buddy connect and that you can help him to make some strides in his skills and cut away, some of the autism box that surrounds him.

But keep in mind that,  that non-verbal, 6ft, young man that you are working with, is my baby…my life.  If you hurt him in any way, you won’t have to worry about the Wrath of God…but you WILL have to worry about the Wrath of Mom!

Welcome to the team!

~ASM

Posted on

The Luxury of Sleep

I have a few favorite autism parent bloggers.   And sometimes I laugh with them and other times I cry with them. But I always feel better knowing that I am not in this boat alone.

So I thought I would share some of those blogs with you and share how they relate to the Autism Super Mom family.

Bacon and Juice Boxes: Our Life With Autism, wrote a great blog on sleep or the lack thereof. (click here to read “Sleep (a little bit of fiction about a struggling dad“)

In the more than 25 years that I have been an autism mom, I have spent many a night either sleeping so lightly that I can hear the slightest noise coming from Buddy’s room or being woke up several times by a random toy, or the giggles of an overtired boy fighting to stay awake, to stare into the eyes of his favorite stuffed animal.

If I had to guess, I’d say my average night’s sleep is between 4 and 5 hours.   I have had some nights that I managed to get 7 blissful hours of sleep, and more than I can begin to count, that I was lucky if I could get 3.

The neurotypical  parent would say…”Can’t you give him something to sleep?”  To which I would say, sure…but he fights through it until about 3am, and then crashes, and I have to wake him up for school, which means he will be sleepy when he needs to be awake.   “Can’t you just let him stay awake until he passes out from exhaustion?”   Sure, I can do that too…Buddy has stayed awake for days, literally. (I think his record was 4 days straight).  And if he’s awake, so am I…and I have a full time job, so then my work suffers.

“Well, what do the doctors say?”  First off, there are very few doctors that have more than textbook knowledge of autism.

Buddy’s pediatrician suggested a teaspoon of Benadryl  every night for his first 5 years.    As a teen they suggested Melatonin.  This worked fine for about a month, then he adjusted to it.

Now that Buddy is an adult, I have a system.   When Buddy starts on a sleepless bender, I  never let it get past 48 hours, before I  give him a piece of cheese laced with an adult OTC sleep aid.  Once he gets that first good night of sleep, he will get back into sleeping through the night…6 hours or so.    But we are only blessed with a “normal” sleep pattern for about 3 weeks and then it starts again.

So when I read Mr. Bacon’s blog, I laughed and cried.   I understand that every little click, light, and buzz is keeping Buddy awake on those bad nights, and I do feel guilty after I storm into his room at 3am screaming at the top of my lungs “GIVE ME THE TOYS AND GO TO SLEEP!!!!”  But I have to admit that sometimes I get a tiny bit of satisfaction seeing him jump when the “mom voice” comes out.

~ASM