While most parents of normal kids plan and stress over the details for a birthday celebration, they are unaware of how equally stressed we parents of kids on the spectrum are as well.
For us, no detail must be left behind. Everything has to be perfectly planned and timed in order to ensure my child 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. We must make sure he does not push anyone (new phase), take someone's toy (imagine the joy of explaining the sharing concept once again to my son in mid-party), or put himself in a position to endanger himself (such as pushing a chair to climb the pool fence or run away).
It's with much joy that I put our 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 perhaps it's best to just stick with "my own kind." You know, parents of other autism kids who get it or just stop attending parties altogether.
We recently had a party "incident." My son cried from start to finish. I finally had it and left abruptly. Why? Well, he did not like the generator noise the bounce house was making. All the happy-happy-joy-joy guests tried guessing why my son was in full tantrum. "Oh, he is hungry," "Afraid of balloons," "It's too hot." Such great pearls of wisdom. I know they meant well, but forgive me for not wanting to hear it as I tried to help soothe my son's behavior in 95 Miami, Florida heat.
The very latest one started out as a good one for my son. Bounce house, outdoors setting with a nice breeze, and a perfect sunny day. The first thing he did was run for the pebbles and throw one in my friend's pool- a habit we have been battling for a couple of months now) I got that one under control and he thankfully moved on to something else. The bounce house was a hit this time. He jumped, climbed, went down the slide, and had a blast. Silly us, we thought it would all be smooth sailing that day.
Fifteen to twenty minutes into the party, he found a toy activity table he liked and almost took it away from a 10 month old (who was using it as a stabilizing tool to stand up). I say "almost" because, of course, we autism parents were watching like a hawk and stepped in right in the nick of time. We saved the day, the 10-month old's face, and moved on to the next scenario.
I have to note that my son has been to this house before. In it, there is a playroom and a big TV. He has played inside and watched this TV before. None of it was available on this day because the party was completely designed to be outdoors only. Not great for us, but the host's right to do so. The problem was, I was not aware of this prior to the party (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 go inside to continue playing.
Go along with me here. If you have a child with autism, you know that explaining things to a child severe cognitive delays is like talking to the wall. In his world, I am the one keeping him from going inside. It's black and white. I can speak slowly, attempt to draw it for him, and keep explaining until I am blue in the face and it will not work. Adding to the problem were the extreme loudness outside (which might have started to overstimulate him), and the Florida sun beating down on us. Did I mention receptive speech is also not his forte?
We tried for about twenty minutes to chase and redirect him to different toys. We also took short breaks in between to sip some water and catch our breath. He finally realized we were purposely not letting him go inside the house and he held on to the door for dear life attempting to enter the house.
If you can please, for one second imagine my husband pulling my five-year old off the door and him screaming like we were killing him. I believe there was a record scratching-moment of pause at the party when everyone turned to see who was screaming so loudly.
We finally decided to pack it up and leave. I understand the party rule was no play inside the house. We did try. But I also know I could not explain this new rule to my son especially given he had been inside so many other times. As we were leaving, I briefly mentioned the reason we had to hastily leave to my friend. She did not extend an offer to let him go inside. I think the situation could have been saved had he been allowed to go inside. Instead, she just said "Aww, OK bye." I wasn't go to impose and insist, so that was that. In the midst of this, we started getting side eye from some of the other parents as my son kept crying. Awesome. Just, awesome.
This is for parents of typically developing children:
(most taken from the very popular Ten Things Every Child with Autism Wishes You Knew post that has been going around and 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.
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That said, I was very upset and in tears as we left yet another birthday party due to behavior issues. My son did not get to see Spiderman who was making an appearance later and did not get to participate in the singing of the birthday song
Just another day of autism....
I sometimes think that autism being an invisible disability makes it worse. Why? People look at our son and immediately assume there is nothing wrong with him. Surely, it must be our parenting. I am going to be extreme here and a bit silly, but I think if all kids with on the spectrum 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 affected by autism, 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 on a daily basis. It's changing who I am. I don't want to play all sides and be a people-pleaser any more. It's much easier to come out, guns blazing, right off the bat defending the rights of my child. Kids on the autism spectrum are not going away and I am not going to live in a bubble. Compassion and empathy would go a long way. Pass it on!
