Here's my thing, I can't tell you what to do make your child functional. It's a miracle that Booga talks. It's been a lot of prayer and a lot of work making him tell me what he wanted instead of pointing to it and a lot of listening to what people thinks is inane babble and deciphering words from it to get to where we are now. They don't always say what they mean, however, you can tell by their body language and by listening what they might be trying to get across.
Another thing that is important is not to treat them like china dolls. Treat them like any other child. Give them chores, make them learn to sit in church, (Booga knows that he can go to the bathroom during church and that he can stay there until he can get his "stims" out because, it's hard to sit somewhere where it's echoing for an Autistic person.) make them listen by pointing to your eyes and saying "Look at me" and then talking to them directly.
Hug them when they do well and tell them when they are wrong. Celebrate what's right and discipline what's wrong. Good heavens. They aren't going to kill you in your sleep. They're heads are not going to split open and lava flow out like a Ray Harryhausen movie character!
I mean there are limits. I know it's easy to loose your temper but try to understand they can't help this…This is something they would rather they didn't have either.
Basically to the best ability that you can muster and that they are reasonably able to do, treat them like any other child in your family. It has limits, but you will find those limits and here's the big thing….Make it understood in your extended family and with your friends that this is what you are doing. They need to know this fact so they aren't acting like he or she is deaf by speaking loudly or ignoring them or freaking out and thinking they can't be trusted with the cat or something ridiculous like that. (??? People, people, people…)
Some will try to be unreasonable with expectations, because people have this "savant" idea in their heads when it comes to Autistic kids. Which is rare and you can tell them that. Just firmly and kindly tell them, "I know this child and what they are capable of and this is not one of those things. I appreciate your input, but this is just one of those times when you can't know because you don't live with it." And then if they persist find someone else to hang around.
Gold C, Wigram T, Elefant C (2006, April,19). Music therapy for autistic spectrum disorder. Music therapy for people with autistic spectrum disorder, Retrieved aug, 10, 2009, from http://www.cochrane.org/reviews/en/ab004381.html
Authors' conclusions
The included studies were of limited applicability to clinical practice. However, the findings indicate that music therapy may help children with autistic spectrum disorder to improve their communicative skills. More research is needed to examine whether the effects of music therapy are enduring, and to investigate the effects of music therapy in typical clinical practice.
It's true.
From the time Booga was small our house has been filled with sound; with music in the car and in the house. He has been bombarded by it and surrounded by it and loves it. He listens to classical and rock and to show tunes and movie sound tracks. He loves Michael Jackson and The Beatles. He loves Celine Dion and he loves Frank Sinatra. Booga doesn't discriminate.
He loves country and jazz and Bach and Beethoven and he loves to dance. He will dance to just about anything that has a good beat and sing (albeit off key sometimes) to any song he thinks is worthy of it.
He was the hit of my nieces wedding, when everyone got up to catch the garter and he got up and danced to the "garter catchin" music. He won my nieces new in-laws hearts by dancing non-stop with anyone who would ask.
He sports an MP3 player and listens to it in my car because he doesn't always agree with my musical taste.
His MP3 player is full. I don't think I could get one more song on it if I wanted to….
When people see him in the car listening to his MP3 player, they think that they are looking at an average nineteen year old man trying to not listen to his mothers taste in music. They don't see an autistic man. They don't know.
My family has always had music in it.
My mother was in a girl band in the forties and was first chair in her high school band. She sang all her life, for funerals and weddings and choir performances….Etc. She still does….
I was in Choirs in church and at high school. I sang all the time. I did musicals at my school. I learned piano and guitar, because my mother made us all learn one instrument. She never really made us do any of it. But we knew it pleased her and so we did it. I was more into art and drama. But I wanted to make her happy.
I can still sing, I just don't have the passion for it she does.
My nephew is in Europe- singing his way through it. Of all of us, I think he exemplifies my mother's love of music. He has always sung, although sometimes it took its roots to the more rebellious with growling metal band rock (when his voice was more made for gentle ballads and classical). Now he's simply a studious young man, even more in love with his very first love than ever before and excelling at something so wondrous and beautiful.
I can't imagine what it is like not to like music, who doesn't like music? I mean what kind of person wouldn't like some kind of music?
We went to the movies and when we got home Booga's alarm was going off. Booga ran in his room and I heard him yell, "Oh great, my alarms going off!"
And the sound of Booga trying to shut it off was humorous.
I mention that because it happens all the time. His alarm goes off and he runs into his room to turn it off, like the police are going to come and take his alarm clock because- it's going off.
Like there is some kind of law against a blaring alarm.
If there was, soooo many people would be in soooo much trouble.
I was in the kitchen making dinner for us when a commercial with a cow that is suppose to be a cheerleader (I don't write these commercials) came on the television.
She was saying, "Gimme a 'C'!" and it went on like that. So Booga started yelling "Gimme a 'C'"!
So I yelled "Gimme a 'B'!"
And he yelled,"B!"
"Gimme a 'O'!"
"O!"
"Gimme a 'G'!"
"G!"
"Gimme another'G'!"
"G!"
"Gimme a 'A'!"
"A!"
"What's that spell?"
"BOOGA!"
"I didn't hear you!"
And louder, "BOOGA!"
"Say again!"
And even louder, "BOOGA!"
"That's right! YEAH!"
So he decided he was going to do that to me, and he spelled "L-a-d-y- H-a-w-k-e" which is movie he is currently obsessed with probably because Matthew Broderick from "The Producers" is in it.
And when I yelled "LADY HAWKE!" at the end of the cheer ….
All he had to say was, "That's a good guess."
Pretty funny.
LET ME STRESS THIS WITH YOU SO YOU DON'T STRESS!
I can't stress enough how important it is for you not to expect an autistic child to be a genius, or a savant, or to write the Great American Novel.
Sometimes they are just going to be your child. Sometimes they are going to live in a group home and work in a factory or a workshop with other disabled children.
I can't stress enough how much you are suppose to not stress out about everything that is abnormal. Please stop. It's no good for you or them.
And don't let them get away with everything- you people running on guilt. Stop it! This isn't your fault it's a roll of the dice.
And these kids need you set boundaries, you're not doing them any favors by not giving them boundaries.
No more pop after you've had four cans in one day. It's enough.
Going into town is not an instant lunch date.
No you may not have everything you want and sometimes disappointment is the best lesson they can have.
I know, I know, these kids will have enough people disappointing them in their life time. But why set them up for a belief that they will get everything they want when we all have disappointments in life- even when we're not Autistic.
Yea.
Look at me.
Another thing I cannot stress enough.
Look at me.
I said this to distraction with Booga.
I said this so much his brother and sister would say, "MOM! I KNOW! I'm not Booga! Stop saying, 'Look at me,' and pointing at your eyes! I know already!"
It's redirecting their attention.
Sometimes it's all they need and it even works on ADHD kids. My nephew is ADHD and I have said this to him "Look at me!"
And I point to my eyes and make him look me in the eyes.
Sometimes they try to look away but you have to make them look in your eyes. Don't grab their arms or anything else, just do it with your tone.
Then tell them what you want them to do or what they need to hear. That way you know they heard you.
It works. Don't knock it till you try it.
Be persistent. Don't stop trying. Don't stop believing this child will talk, don't stop praying because you need God's help with this.
I don't know what I would have done without my faith.
I prayed about potty training.
I prayed about language and learning.
I prayed till I fell asleep some nights but not always about Booga.
The Good Lord's help, Dave Matthews Band music, my husband and parents and a family that grew with Booga and learned with Booga and learned tolerance and acceptance because of Booga. I have friends that were enlightened, who I was fortunate enough to find and teachers who were miracle workers, and a pastor and his wife who I know God put in my path.
This comes to no surprise to you when you suddenly have an ache or a pain that in your youth, you just never had before.
For instance, when I was in high school I fell down the stairs at the high school. Our high school was three stories tall with granite stair cases two at each end and two in the middle, and because my last name started with an "S" I was subjugated to climbing all three flights if I had a class on the basement floor….Yes we had classes in the basement.
It was a small town.
Anyway, I was wearing a skirt one day for some reason and I had to run up the stairs to get to my locker and I fell down the stairs and managed to jam my arm into the socket of my shoulder.
Now, I knew that someday that would be a source of some pain. I knew that damaged tendons would probably lead to some arthritis, however I was unawares that it would become my barometer of how nasty the storm coming up on us was…And so every time it snowed a goodly amount or we had some crazy thunderstorms-if the barometer was in the right place and everything had worked it's way out somehow, I would be in some righteous pain.
What I didn't realize that at some point this would become the pinnacle of pain, aside of my back, which went out on me from time to time because of an injury sustained as an employee of Information's Technology.
So this morning, I woke up, in a pretty good mood and was going through my day and for some reason, out of the clear blue sky "OUCH!"
It was storming outside, a good, hard steady rain; however, did I expect that I would be immobilized with pain? No.
And the first thing you think is, "Is this more than just a pain left over from something that happened almost thirty some years ago?" "Should I go to the hospital with this pain?" Don't know, it's hard to know. I mean, nurses always look at you like you're an imposition when it's something like an ache from an old injury…Like you're a wuss and should just deal with it. SO you hate to go in there and have it turn out to be the victimization and violation of your bones as a teenager, coming back to reek vengeance on your body as a middle-aged mother of three and former IT worker.
However, since a bus could miss me walking in front of it sometime while shopping at the local grocery store…Or I could at sometime be one of those unfortunate souls who are in the designated flaming airliner heading for a field somewhere….Here is a list of songs I wish played at my funeral. Please make sure it happens:
You and Me- Dave Matthews Band
April Come She Will- Paul Simon
Bridge Over Troubled Waters-Art Garfunkle, Paul Simon
Baby Blue- Dave Matthews Band
Golden Slumbers- The Beatles
Good Night-The Beatles
Have my nephew Zech, sing April Come She Will and Golden Slumbers and Good Night.
Okay, I wrote this when I was really friggin tired so don't judge me.
Booga was watching his dad’s western and saw a gun fight and said, “Ow, that’s gotta hurt.”
Earlier his father had stopped to get a chili dog because his blood sugar dropped and bought Booga a coke. When Booga asked why he couldn’t have a burger and a coke his dad told him that he had bought the chili dog because he has low blood sugar and if he didn’t eat something he might pass out. So Booga decided his blood sugar was low too and pretended that he was getting faint. His dad didn’t buy it. When his dad told me about it later at dinner in front of Booga, Booga must have been incensed because he said to his dad in a low voice, “You know what I’m gonna do?” “What?” His dad said. “I’m gonna take your McClintock VHS tape.” Booga’s dad is a big John Wayne fan. “Oh, so you’re going to take John Wayne.” “Yes.” “Do you like John Wayne and Maureen O’Hara?” “Yes. He gets drunk and falls down the stairs.” Which in that movie- he does…. I’ve heard them watching American Graffiti before but never a western. It was funny listening to them talk about westerns; it’s not something I’d ever thought I would have heard the two of them talk about. It was kind of sweet… However, all of that went to heck in a handbag though because Booga found a chicken leg in the back of the refrigerator and praise God I live with him, because his father would have not even thought twice about the quality of chicken leg. I told him he couldn’t eat it because I didn’t know how long it had been in there (personally I don’t want to think about how long it had been in there…Or why my husband would imagine it would be okay…) and that was pretty bad in Booga’s eyes, but what I did next would set him off on a spree of self-stimulation we haven’t seen since 2003. I caught him cleaning off the counters with wood polish and I told him that we use that on the table and the bathroom cleaner on the counters….Pretty much shouldn’t have done that because the rest of the night was ruined for him and for hours his inner self struggled with why I would be so heinous as to insist on such a routine….I must be anal.... It was made worse because I kept trying to calm him down, but I finally gave up and let him go. It’s 12:06 AM and he’s still self-stimulating still.
My son Booga was confirmed in a special needs catechism.
He came home one night and it was pouring rain.
And Booga began telling me about Noah and the flood (as if I had never heard this before). Then I asked him what happened afterward and he told me about a rainbow with pretty colors...
He remembers everything.
My son Chewie, had been checking out a series on Television called Rome, which, he says is pretty good. I have to agree; although it tends to shock me, with my Midwestern values and all. I just forget sometimes that this is HBO and they have no moral boundaries.
I asked him about a character on the show named, Octavian. I said, "Do you know who that is?"
He shook his head at first and I said,” Do you remember who Caesar Augustus was?"
And he looked down for a minute, "...And Caesar Augustus issued a decree that a census should be taken of the entire Roman world..."
"Yea." Wow, he remembered that.
"Same guy." I said.
"Oh so this was the Emperor who Paul stood in front of..."
We had just been hearing about Paul in Rome at church that day...And I was stunned that he remembered that. You think your kids aren't listening in church sometimes...
I said, "It amazes me how God sets up things to fall into place, the Romans were put into power and became a world power just as Christ was born, and really with the conversion of Emperor Constantine, Christianity really took off...Albeit three hundred years or so after Christ...But in the grand scheme of things...It's amazing.
