Special Needs Children

Being A Mom Sucks Part 3 But Sometimes Autism Sucks Worse

/ Gardy Loo Pismire / 1 Comment

I am in the airport finally going home with the tween daughter of the last few posts. I am excited to see everyone when I get a text from B.

Paul attacked me. He charged me and to protect myself I had to take him down to the floor and hold him there.

My adult daughter, Nicole, who is at our house witnessed this and I get a text from her as well.

I was scared for dad. Dad handled it so well but I was really scared.

I hold my breath and die just a little bit more inside.

Several days before I left for Chicago there was another altercation with Paul involving me. He hurt me in a rage while he was trying to get something that I had taken from him.

Paul has always lived on the edge of rage. Since we have known him and brought him home at 10 months old. His first act upon arriving at our home was to toddle over to his brother and throw him to the floor. It has been some version of this ever since. While they are great friends Andre always knows there is a chance that Paul will get upset and lives accordingly. We all do. It is exhausting at times.

At the age of 11 after much grief and debate, we finally broke down and started using meds to help moderate his ever shifting moods.We have a great med doc who listens with compassion and always tries to use the least amount possible in order to achieve stability. That said, we still have periods of paranoid thinking and depression which has worsened as he hit puberty. Sometimes I want to take him off all meds and other times when I think of doing that I am scared about how bad things might become. Worse. Intolerable. Maybe even dangerous.

And now this. Increasing violence to himself and against us. Not horrible…yet…but where do you draw the line? When you love someone, as we love him, it seems the line keeps getting stretched further out. Further out than you would allow for any other person you come into contact with. There is no aggression toward anyone else except those within our family. Yet I worry that if he was ever involved in some sort of police incident he would be killed because he would run or maybe struggle with an officer and we all know what happens to minorities who do so.

My heart feels like it has been shattered in pieces so many times this past year and I wonder if I can find all the pieces to put it together once again. My mother heart, my marriage heart, my lover heart and my friend heart.

I ache to be and feel whole once again.

Being Mind F***** By Your Kid

/ Gardy Loo Pismire / 2 Comments

 

This happened about five years ago but it still amazes me that I am no closer to solving the problem of not getting mind F***** by my son with autism.

So today I was called to school because Andre was acting up and out. He kept calling out for his stuffed dog, Snuggles. OVER AND OVER AND OVER again. Even kicked his aide which has never happened before…lovely!

So I went to school armed with cleaning products (natural of course) and a trash bag for picking up leaves to add to my compost pit as a punishment. Seems this all started because:

A) I caught Andre trying to take his dinosaur book to school and removed it from his backpack

B) seems I forgot to give him his medicine.

Score two points for the Loser Mom of the Year award. So Andre is cleaning the tables in the cafeteria and it turns out he is having a great old time and would much rather be doing that than to be in class. Project Clean The School backfired on me. Hmmmmmm, my brain is on fire as I try to think about how to stay one step ahead of him.

Today when he gets home, he is still out of sorts and totally misbehaving. Finally, I told him that since he could only talk about Snuggles that I would be taking said stuffed dog and keeping him with me and that if he did a good job at school tomorrow he could have him back; which I might add he went with quite readily which surprised me.

About an hour later his ABA tutor, Amy, is asking him to write down three things he could have done differently at school regarding the SNUGGLES EPISODE. He tells her “Who is Snuggles?” and just starts screwing with her.

“I don’t know a Snuggles?”

“Who is Snuggles again?”

“I don’t know any Snuggles, do you?”

I mistakenly decide to call  his bluff and up the ante. So the next time he says he doesn’t know who Snuggles is I say, “Well, since you don’t know him I guess it won’t matter to you if I take him out to the fire pit and burn him up” to which Andre replies “I”ll get the marshmallows!!!!!!!!!!!!” Amy and I look at him dumbfounded. What this is his best friend since he was three years-old and he wants to roast him right along with the somores? I just don’t get it!

So I try again impressing upon the fact that Snuggles is going to be a heap of ashes when he is done in the fire pit and Andre’s response is still, “Bring on the marshmallows!”.

Now I am caught between a rock and a hard place and I have put my own self there!!!!!!!!! UGHHHHHHHHHHH! How can I do this to myself????? When will I ever learn????????????

For now I have no choice but to march Snuggles out to a fiery demise. So up the stairs I climb like a soldier leading a prisoner to the guillotine. And as I hold the doomed dog in my hands looking at Amy with a ‘please help me get out of this mess’ kind of look; down the stairs comes Paul with tears in his eyes.

“You can’t burn Snuggles up, you just can’t” and the floodgates let loose. “Andre loves Snuggles and Snuggles has been a loyal friend.”…AND… I’LL TAKE THAT…saved by an eight year old.

“You are right Paul and since Andre doesn’t care about Snuggles anymore and you have spared his life he is now yours.” (Thank you Paul. Bless your kind compassionate soul 1000 times over)

 

To which Andre says “Shucks no marshmallows!”

This means, of course, that I will not sleep all night as I try to figure this whole situation  out because it is now painfully obvious I am being mind f***** by a nine year old and I don’t know what to do about it.

Mom’s List Two

/ Gardy Loo Pismire / 1 Comment

images

I don’t know about you but as a mom there seems to be some sort of invisible list that hangs over my head, flapping in the breeze to remind me of its presence. THE LIST consists of all the things my kids must do at least once so that I can check off one more box that assures me that I AM A GOOD MOM. Trying new food. The latest, purple broccoli….check. Yearly pictures at Sears…oops missed that one…but now that I am aware of that fact by next Tuesday it will be done…semi-check. Playing the piano…okay not ready for Carnegie Hall but does know where middle C is located…check.

Now B is the sports minded one in our family but because two of our three children get crazed if something as small as an ant touches them during recreational sports …trying to knock out the numerous athletic activities…well, its a challenge. If I had my druthers I would just scratch that whole section off THE LIST as several family members consider high quality endurance sports akin to laying on the couch and dipping ruffled potato chips into dip. (the endurance part comes when you have to turn the chip around and dip again being careful not to double-dip) But I have a fear that scratch outs might just not get you into heaven so I persist in introducing my kids to new sports knowing in my heart of hearts that is what all GOOD moms do. This is what lead us to the Gateway Ice Skating rink yesterday afternoon where the kids attempted ice skating for the first time. It was, needless to say, an EPIC FAILURE!

 I will admit that sometimes it seems as though it takes a while for my kids to get comfortable with new activities. First we have to check out each and every toilet in the entire facility. If the seat is comfortable then my kids might give it a try. If not, we are OUTTA there.

Next comes that vending machines. If they have anything gluten free and casesin free then no matter what comes next the day will be considered a success until they actually have to do it.

Finally, throw in a 16 yo cashier who is making minimum wage but will answer every one of the 20,000 questions through at them about the history of the sport, the equipment used and the rules of the sport, then participation is a definite maybe. Better yet, if the cashier can quote numerous safety statstics; then its a go. Yes, even contemplating sports can be an exhausting endeavor.

So after spending 1/2 hour tying and re-typing the skates, using the bathroom…again… and learning to walk on blades the time had come for the kids to make their way onto the ice. If, as the old adage goes, you can smell fear; then the fumes around our family was the pungent odor that follows you about three hours after eating grandma’s chili. You just couldn’t shake it. Feet started going every which way but forward and the sound of buttoms slapping the ice…HARD… reverberated throughout the arena. To top it off, I pulled my back out trying to hold up one child while falling down with another. Mom was done and judging from the little faces surrounding me, the vending machine owner was about to become a very rich man.

Paul put a brave face on and after once around decided taking his hands off the railing was more to his liking.Gracie whined until her daddy escorted her like the princess she is around the rink. But I knew all was lost in regards to Andre when he spent 1/2 hour going 1/2 around the rink with his toes turned in towards the wood paneling the entire time. Never have a seen a child so happy as when he took his blades off the ice. After exiting the rink he looked up at me and said, “Well, those were absolutely the worst minutes I have ever spent in my entire life!” And needless to say,  his assessment didn’t get any better until B bought hot chocolate.

Later, on the way home, Andre talked about the experience. His take? “Well, I am glad that is over. I did it once, it’s a NO GO and thank goodness I will never have to do that again. Now, mom, what else can we cross of your list of things I have to do?”

“What list?”

“You know, the one that you have that makes me try everything for my own good even though we both know I am going to hate it. So really, this list is really about you. Why don’t we just leave it at that!”

And with that he was done. But I’m not. I want to know how he knew about THE LIST!

IEP Services From The School District

/ Gardy Loo Pismire / 2 Comments

iep meeting alers

For years we have been fighting our local school district to get our son what he needs in order to learn. Comprehension is sometimes difficult and math often impossible. We have watched him struggle to learn things that others grasp without effort while the school district ignored our concerns. Yet, if he is taught using particular methods he is often able to do the work that is required. Unfortunately, we do not yet know some of the methods that he would benefit most from.

We first realized he was having difficulty with math in first grade. We brought it to the attention of the IEP team. Our concerns were dismissed. In second grade, “It just takes some kids longer.” In third grade, “So he won’t be at the top of his class in math. (Yeah, duh!)” We then paid for him to go to an after school program at the cost of over $400 per month to learn his multiplication tables which the district could not manage to teach him. In fourth grade, he really started slipping but it was “Well, we can’t do anything now because he isn’t failing.” The rage I felt was immense. We were trying to be proactive but the district wouldn’t take our son’s lack of being able to understand and apply concepts seriously. By fifth grade they couldn’t quite ignore it anymore but their solutions and IEP goals were meaningless. He is now in 8th grade and doing math at a 4th/5th grade level. SIGH. I can also say the pathway has been similar for reading and comprehension but not as difficult or severe. In retrospect, the things we would do differently are numerous including taking the school district to Due Process. But the end result is that we have refused to sign his IEP for more than two years and continue to work with an outdated one.This, of course, is beginning to make the district nervous for what it means for them should we instigate legal action.

One of the things we have been fighting for is a GOOD educational/cognitive/psychosocial assessment of our son as we have disagreed with the district’s findings. We feel this is the best way to discover the issues that are effecting his learning and how he needs to be taught to reach his full potential. We have had a well-known and respected doctor in mind to do this assessment who specializes in kids with multiple “things” going on and have been fighting for the district to get him seen by him. Thus far the school district has refused citing their policy (which is illegal, BTW) that IEE’s must be performed within 60 miles of our home. If you understood where we are located you would also know that these types of services are not available here.

It has been a long, hard road with often disappointing results and constant stonewalling from our school district. But after all this time we were just notified that they have agreed to this testing and with it comes a very belated victory for our child which has cost him dearly due to these very purposeful tactics and delays.

Unfortunately, no family should have to go through this. Yes, we have at times hired a lawyer to push our case but the cost is immense and we see very little action for the money spent. School districts often stonewall because most parents cannot afford legal services, they don’t understand the law and districts know that most parents get weary of fighting “the machine” and give up. It’s hard not too. When you are already struggling at home because of the way your children’s disabilities impact your home life taking on a huge school district seems impossible and the educational system counts on that. Yet, by not doing right by our children it puts a future drain on our economy because these kids get discouraged by their lack of understanding/comprehension/accomplishment and drop out of school. They then face a life-time of unemployment or underemployment and the use of social services that could have most likely been avoided had they had some measure of success in school. Prison and gang activity is also a direct measure of the failure of the educational system.

I wish I could say it has been easy but I can’t. In fact, fighting this battle against the local school district has contributed to our ‘almost divorce.’ But I do urge all parents out there to continue to fight for their children’s place in the educational system. I have to believe that eventually we will make a difference.

 

 

Oxytocin TherapyFor People With Autism

/ Gardy Loo Pismire / 3 Comments

images-1

Several years ago we asked our doctor about using oxytocin a/k/a the “LOVE Hormone” with our sons. At that time the doc said he wasn’t convinced regarding it’s effectiveness and wanted to see more studies. Well, start writing on the prescription pad, Doc, because the results are in.

According to a recent study released by the University of Sydney using one squirt of oxytocin in each nostril twice a day changes how children with autism approach the world and their relationships in it. Both parents and clinicians reported that children with autism were more socially responsive after beginning oxytocin therapy. Increased memory, eye gaze and emotion recognition were just a few of the benefits reported.

In case you haven’t noticed I am all in and the next time we visit our doc I am going to ask to give it a try. It couldn’t hurt and it may do a lot to change how our interactions occur.

 

No Filter

/ Gardy Loo Pismire / Leave a comment

images-6

One of the things about Autism that is so endearing/maddening is the utter lack of a filter that Andre has.  Whatever he thinks…is what is said. We usually get comments from friends like, “Andre manages to say what most of us wish we could say but aren’t brave enough to do so.”

So yesterday the boys saw a picture of me from about 20 years ago and Andre told B that I looked sexy. It was one of those that they did your hair, makeup and dressed you in nice clothes. Glamour Shots. Now defunct. Like me.

So today I said to Andre “I hear you told Dad that I looked sexy in that picture in the garage.”

Andre: “Yeah I can tell that back then you WOULD have looked cute in a bathing suit.”

Me: “How can you tell that?”

Andre: “It’s a guy thing mom. Every guy can tell whether on not a girl will look good in a bathing suit. But what I really want to know is what happened to you?”

Me: (thinking I probably should not ask and just let things lie) “What do you mean?”

“So is it the fat part of you or the age part of you that got out of hand or is it both?”

“No, it’s the having kids part that did it to me.”

“But I hear people say having kids makes you stay young. It obviously didn’t work for you.”

“And it won’t work for you either!”

Andre: “Perhaps I will create a dinosaur instead of having kids! But… then I would have to worry if it would eat people!”

Pause…

“See mom you have it really easy. At least you don’t have to worry if I am going around biting people’s heads off!”

Autism 101

/ Gardy Loo Pismire / 1 Comment

images-2

AUTISM 101

Often times we have our best conversations in the car so tonight (2011) while Paul and I were out together I decided to broach the subject of autism and explain to him about the condition he has. Our conversation went like this:

Me: Hey, Paul have you ever heard the word autism?

Paul: I’m not sure but I think so.

I pause wondering if I should go on

Paul: So what is it?

Me (Describing Paul): Well, it is something that some people have. Sometimes a person with autism hears noises louder than other people. LIke they might hear the refrigerator sound very loud whereas most people can not really hear it. Or sometimes for someone with autism lights seem very bright. Sometimes people with autism find it hard to be touched or they are really ticklish. Do you want me to go on?

Paul: Okay.

Me: Sometimes people who have autism find it hard to look other people in the eyes when they are talking to them and sometimes it is very hard for them to sit still. For some people with autism the tags in their shirts make them itchy. Sometimes it is hard for them to talk to other people. But people with autism are usually very smart and often they see things in ways that other people don’t which makes them good artists or good with computers or good playing a musical instrument. Their brains just work a little differently than many people, but hey, everyone is different. Some people have brown hair, some people need a wheelchair to get around. Having autism is just like being a boy or being Korean or having blue or brown eyes. It is just a part of who a person is but not the whole person. Do you have any questions?

Paul: “Mom, do you have autism cause if you do, I still love you just the way you are!”

ARE YOU KIDDING ME… NEVER TAKE FOOD FROM MY KIDS

/ Gardy Loo Pismire / 3 Comments

images-1

YOU HAVE TO BE KIDDING ME…

Sometimes I just shake my head and surrender.  I mean sometimes there is just nothing else to do but that. Today was one of those days

So I am downstairs with Paul when he says to me, “Mom, Andre dropped his pack of gum in the toilet.”

“That’s too bad,” I said.

“But Mom, he dropped his pack of gum in the toilet.”

“Did he flush it?” I ask.

“No”

“So where is it?”

“Andre has it”

“Andre,” I yell at the top of my lungs, “Come down here please.”

“Okay Mom”

“Andre, did you drop your pack of gum in the toilet?”

“Yes, Mom, I did”

“So where is it?”

“Right here,” he says pulling it out of his pocket.

Then it dawns on me….

“Andre, is the gum you are chewing, the gum you dropped in the toilet?”

“Yes, Mom”

ABA therapist T and I just stare at each other incredulous. Then T recovers and says “Andre gum that has been in the toilet has germs. Go spit it out right now!”

Andre runs to spit it out….then Paul follows right behind him and spits his out!!!

ARE YOU KIDDING ME??????? REALLY????? After that lollipop incident in the pit toilet? Didn’t you learn anything then?????????? Granted you were only five but PLEASSSSSSE that is one of the lessons that should never be repeated.

“Andre, why did you think it was okay to fish your pack of gum out of the toilet?”

“Well, I let it dry out first!”

And there you have it! Hopefully now you will remember my rule. NEVER, EVER, EVER take any food products from my children. NEVER!!!!!!!! Taking food from my kids can be hazardous to your health!!!!! Consider this to be a warning and some sort of legal publication!!!!

The SEX Talk…274 Days To Fix This

/ Gardy Loo Pismire / Leave a comment

images-2

One of the good things about Autism is that sometimes it qualifies you for services that will help your children navigate the world both now and in the future. Several years ago we had individuals trained in ABA therapy come into our home five days a week teaching our boys such things as social skills, safety awareness, and on one occasion we had THE SEX TALK with the therapist leading the conversation. These are just a few of the comments made during that discourse:

  1. If THAT is what it is suppose to be used for, why am I only finding out about it now?
  2. That’s a relief! I thought after you used it once it fell off!
  3. I hope Mom doesn’t take mine away like she did Max (we had just had the dog neutered)
  4. After this, I REALLY don’t want to know what they are going to tell me when I am in seventh grade.
  5. Oh geez I am only 11 years old and the thought of a man and woman having sex makes my penis want to throw up!
  6. I think that this will blow Paul’s mind when he hears about this. Not in a good way either.
  7. Is that what they mean by “an endless black hole?” (Yes,he said that with total sincerity)
  8. If sex feels good why does anyone stop doing it?
  9. I think I want to go into the condom business
  10. If it takes two people to make a baby, what do three people make? ( I have NO idea where that came from!)

Since that time the questions have evolved and become more sophisticated. Last week we graduated to sexual consent and I found a video that was probably the best description of it I have ever seen. Every young man should see this before he even considers having sex. Every young lady too. So here it is. And now I think I will go get a cup of tea.

http://www.theguardian.com/media/2015/oct/27/police-youtube-ad-campaign-sexual-consent-tea?CMP=share_btn_fb

THE HAPPIEST HALLOWEEN EVER

/ Gardy Loo Pismire / 2 Comments

images-1

Sometimes I am really worried about the young people growing up in today’s impersonal world. Often it seems as if they have little compassion, are involved in things that are questionable, and spend way too much time on video games while not spending enough effort on interpersonal relationships. Tonight, I am pleased to say I am going to have to re-consider those impressions.

This Halloween Andre chose to forego the usual costuming and instead he decided to be the one to hand out candy to all the kids in the neighborhood. I remember years past when Trick-or-Treating was very hard on him. Too much commotion, too much noise and too many scary things. Yet, tonight he wanted to be part of the action; just from the safety of his own front porch.

This evening I heard constant giggling coming through our door from the little kids as they came up to the front porch where Andre was sitting, candy in hand, excited to hand it  all out. Andre talked to every child and had a running commentary going with everyone who approached. There wasn’t one person who came to our house that he didn’t  talk with and befriend. And then something magical happened.

To understand Andre, you have to understand that he has only been invited to one or two birthday parties in his entire life. While kids at school are mostly kind, he has never had much of an out-of-school relationship with anyone. His rapid speech and his way of relating to others due to his autism has made attracting and maintaining friends difficult for him and so I was amazed by what I saw as I opened the front door by chance.

There on the porch stood five gangly boys all of whom had been in Andre’s class last year. They were the popular kids, the ones THE OTHERS all wanted to be like, especially Andre. I watched as each one of them came up to him saying “Hi Andre” while giving him a teenage boy pound on the back usually reserved for young men on the football team.  All seemed glad to see him and each told him that they missed him. But the most profound moment came when one of the boys looked Andre in the eye and said, “School isn’t the same without you. You taught us all so much.”

And then they left.

“Did you see that mom? All my friends were here. I can’t believe it. Wasn’t that great!”

Yes, Andre, it was great and for more reasons than you will ever know. For those boys restored my faith in today’s teens. They are good boys with great hearts and an ability to make everyone feel liked and included. But most of all, I came to finally understand that there are all kinds of friendships, and while Andre’s are certainly different from mine, to him they are every bit as valuable. Even if those friendships occur just for a few minutes at a time on a spooky Halloween night.