Monday, April 7, 2008

Green, three headed kids and the birthday parties

Ahhhhhh the business of kids birthday parties!

While parents of normal kids plan and stress over the details they are unaware of the stress that comes to the parents of kids with autism who are planning on attending such party.

No detail must be left behind! Everything has to be perfectly timed in order to ensure the autistic child attending is in the best mood. The special gf/cf/sf foods have to be prepared ahead of time and into my son's lunch box. Once there, while other parents hang around, drink, eat and socialize, my husband and I take turns being my son's shadow making sure he does not push anyone (cause and reaction curiosity I call it), take someones toy (imagine the joy of explaining the sharing concept once again to my son in mid party) or put himself in any position to endanger him self (such as pushing a chair to climb the pool fence or run away ).

It with much joy that I put myself and my family in these situations over and over. (I am kidding of course- it is a much dreaded event to open invite after invite) I am beginning to think that, hey, maybe it's best to just stick with my own kind. You know, parents of other autism kids who get it. (most of them anyway).

The last time we had a birthday party catastrophe was in the fall when my son out of nowhere cried from start to when I had it and left abruptly all because he did not like the generator noise the bounce house made. That party was full of happy happy joy joy people trying to guess why my son was in full tantrum (oh he is hungry, afraid of balloons, too hot, etc...all pearls of wisdom I tell ya).

This one during the weekend started out as a good one for my son. Bounce house, outdoors , nice breeze and a perfect sunny day. The first thing he did was run for the rocks and throw one in my friends' pool ( a habit we have been battling for a couple of months now). Got that one under control and he moved on to something else. The bounce house was a hit. He jumped, climbed, went down the slide and had a blast. Silly us thought that would be it.

15 to 20 minutes into it he found a toy activity table he liked and almost took away from a 10 month old who was using it as a stabilizing tool. I say almost because of course us autism parents were watching like a hawk and stepped in right in the nick of time. We saved the day and the 10 month old's face at that and moved on to the next scenario.

I have to say that he has been to this house before. In it there is a playroom and a big TV he has played in and watched. None of it was available because the party was completely designed to be outdoors only. Not great for us but the hosts complete right to do so. I was not aware of this prior to though and had I known I probably would not have been able to attend. It became a big problem when my son decided he now wanted to be inside and no longer outside.

Go along with me here. If you have a child with autism you know that explaining things to a child that barely has reasoning skills is like talking to the wall. I can emphasize my words, show him I am mad and try tricks left and right until I am blue in the face and it will not always work. It will mainly not work in an outdoor environment where the noise factor is a 10, the Florida sun is beating down on ya and yeah, receptive speech is not his forte.

We tried for about 20 minutes to chase and redirect him to this toy and to the other taking breaks in between to sip some water and catch our breath. After those 20 minutes he finally realized what we were doing and held on to the door to enter the house for dear life.

If you can please imagine my husband pulling my 5 year old off the door and him screaming like we were killing him. I believe it was a moment of pause at the party when everyone turned to see who was that screaming so loudly. Why, everyone else was having a divine time relaxing and having a good ole time. But I digress...

We finally decided to pack it up and leave. I understand the rule was no play inside the house. We did try. But I also know I could not explain this rule to my son when he has been inside so many other times. I mentioned to my friend that we were leaving because he wanted to be in the playroom inside and did not understand the change today. She did not offer for him to go, (I think had he gone he would have been there 15 minutes and the situation would have been saved) . instead she just said "aw -OK bye". She was in her right not to extend invite to play indoors and I did not want to impose by asking either. So, that was that. In the midst of this we were getting dirty stares from some of the other parents because of my son's crying and well, you all know how it is.

So this is for parents of typically developing children:
(most taken from Ten Things Every Child with Autism Wishes You Knew with some added comments by me)

1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself.

3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*………" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me "It's raining very hard." Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.

8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included. I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. PLEASE DON'T JUDGE ME. I cannot control my impulses.

10. And finally, three words: Patience. Patience. Patience.

With that said, I was very upset and in tears we were leaving yet another birthday party due to behavior issues. My son did not get to see Spiderman who was making an appearance and did not get to participate in the singing of the Birthday song which we had been practicing. We left in a sea of confused looks our way, shaking heads and rude people who surely knew better than us how to control our child. Urgh.

Just another day of autism....
I sometimes think that autism being invisible to the eye of strangers makes it worse. Why? People look at your son and immediately assume there is nothing wrong with your child and that it must be your parenting. I am going to be extreme here and a bit silly but I  think that if all kids with autism were green and had 3 heads there would be a cure by now. Seriously, stop laughing. It's a lot more acceptable to read about the 1 in 150 kids, feel bad for a second and go on with your day. But, if you had to look at a hell of a lot of green kids with 3 heads walking around all day, every day, something would have been done about it by now. The sense of urgency would be different. You would be reminded all the time. Isolating and discriminating against these kids would only work for so long. At the rate we are going, it won't be long before there will be a child with autism or special needs everywhere you look. 

I am tired of the lack of understanding I encounter everywhere I go. 
My demeanor is changing from one of trying to play all sides and being a people pleaser to one to come out with guns blazing right off the bat if it means defending the rights of my child.  Our kids are not going away. I am not going to live in a bubble. It would be nice if we could all have a little compassion for others.


GFCF Mommy said...

Great post! You should forward it to the other parents at that party in the name of Autism Awareness Month!


GFCF Mommy said...

I have a little game in honor of autism month going on my blog, "10 great things about my child" and I thought you might like to play along!

Holding It Together said...

Hi, I just found you through BlogCatalog - I can so totally relate to this experience and my emotions go all over the place when stuff like this happens. After a disastrous outing to toddler storytime at the library prior to my son's diagnosis, I waited until he was four to try again.

I did my research - it would be held in a room instead of the big open space upstairs, it would involve books mixed in with other activities, etc.

We arrived for the first day to find that the kickoff to the whole program was to have ALL the different age groups together for a live concert with a children's singer. We made it through 20 minutes of waiting and about 10 minutes of the concert before he needed to leave.

Needless to say, he refused to go back for any of the other sessions. :(

CharlieInWonderlandDotCom said...

Boy am I ever glad I clicked when I did on Something Beginning With A's site! Great post! I'll be putting a link to it on my site... and sitting up late tonight to read your past posts!


Inspiration Alley said...

Found this through blog catalog and have to agree that because Autism is invisible people assume behaviour is down to bad parenting.

Also agree that sensory integration dysfunction is a major problem. In England there is a lot of talk in medical circles about adapting the concept of the triad of impairments to somehow include this.

Queenbee said...

thanks for stopping by!
Hope you enjoyed my rants!! lol