Green, three -eaded kids and the birthday parties

Ahhhhhh the business of kid's birthday parties!

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.

=================================================================

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! 

Never a dull moment

As we left speech therapy, my son wanted to stay and watch the TV in the lobby. I urged him to walk with me. He jumped and landed on the floor right outside the therapy center screaming loudly and his back flat on the floor. He did this like 7 times or so, until I picked him up like a big heavy sack of potatoes and carried him halfway to the car. I put him down because he is heavy and I thought he was better. Bad idea. He jumped again and dropped himself on the floor screaming like I was killing him, crying using his throat. He was not there…he was gone, blank stare and all. Every time I was successful in picking him up, he would do the same and attempt to run back to the lobby. When he could not, he would jump and drop again. To make things better, he then rolled over and over and over in the middle of the parking lot as he screamed. I finally gathered some strength, picked him up high again as he threw his head back in full tantrum and pinned him with my shoulder to the car seat to buckle him in. Once buckled in, he was in full rage screaming and not letting me pick up my keys from beneath him (which I had dropped to buckle him in as he purposely threw his legs up towards my head!) I finally pinned them down and got my keys. As I closed the door and walked around to my side, I could hear him outside of the car screaming and kicking! Wow!

It was a trance-like transformation. Earlier, he had been super verbal, singing and so happy. Who is this person crying? I drove back and finally broke down crying. Although during the episode, I remained super calm. I stood watching him for some time trying to figure out what the hell he was doing and why! Five minutes later, he was happy like nothing happened.

We got home and he was happy, but when it was nap time he did the same thing. I usually lay down next to him until he falls asleep. I just stayed there as he screamed and screamed. He is doing a new sim thing. It's  like he is trying to catch his breath (but it' s not precisely that). Maybe he has some pain, but can't and doesn't know to tell me. His heart was racing fast. I finally caught him off guard and held his face really tight and said "Sleepy time now!" He cried a teeny bit more, turned over and crashed...all within 15 seconds of me doing that. Like I snapped him out of it.

So much for my good news. Must be the side effects I hear about all the time from some of the supplements? Sometimes it gets worse before it gets better? But hey, I will take 30 steps forward and 2 back ANY TIME!

On a funny note, they just called from the center about some financial thing and I completely thought they were calling to find out about the mad woman who was carrying her crazy child against his will to the car today. Ha! Gotta find the humor in it, right?

Time for a haircut...

My son has really long hair.
(Disclaimer: not my son in the picture)
We did not plan it that way. We let it grow, waiting for all sides to become even when he was a toddler. One day, here he was! Long hair!

It's really cute and fits him perfectly. Most people always compliment him on it. Thing is, with such a haircut comes time to trim. Not only trim, but precise trimming. It has to be even all around.

His first official haircut came by the time he turned 2. It was a complete nightmare. We had gone to a kids' only salon, but my kid was the only one laying flat on the floor, red faced, snot-blowing, feet-banging and hands flying. I ended up having to sit down on the chair, squeeze him in between my thighs and hug him so tight that I left from there sore. No kidding...sore! But he needed a haircut. Nothing I could do about it at that point. It was a complete circus.

Several months later he had his occupational therapist work with him daily: combing his hair, using play scissors, mentioning the words cut, hair, etc.. It gradually got better and in the last 3 times or so, it has been doable. He still screams, but he can now sit on his own and I just have to hold his arms down softly and remind him "hands down." The only time I have to use force is around the forehead and ears, but not too much. 

Today, well, today was almost like that first haircut. Maybe he was too tired from school. Who knows? But today, today was no fun.

I found this really fun place with lots of TVs and endless DVDs! Such a fun place. Drove there after school and did our usual haircut routine; sit down in front of a TV playing a favorite Wovie. No problem so far. The chair even had a lap belt. Genius! He couldn't wiggle away! woohoo!

Then she started to untangle his hair. She did it way rougher than I do and kept spraying lots of water on him. I pleaded for her to please do it softer and not spray so much. Nothing. She clipped parts of his hair with hairclips....ayayayayyyy what? He has never had clips in his hair. He lost it. He freaked out! He started screaming at the top of his lungs, crying and fighting this woman. I finally took the clips ouf of his hair and asked her to do it like everyone else had before. Just go around trimming the darn hair!

But now, he was hysterical. My mom helped keep his hands down and I held his head in place for, you know, the "precise" cut. When we were almost done, I lost it crying as well. Odd. I usually cry at a lot of autism related things because I get frustrated and not usually at haircuts. But today, I cried.

When the stylist finished, I realized only 10 minutes had passed. 10 minutes! That's it! It felt like an hour. It really did. Wow. He instantly turned into his usual charming self and started dancing to the Wiggles which played on another TV. While he danced, I had listened to the stylist lecture me on "Don't say he doesn't understand. He does understand and you can't say that in front of him." Why do strangers think they can say such things without actually living through what I live through? She saw my son for 10 minutes and it gives her the right to "lecture" me? I would love to see her give him the haircut without my help. It just would not happen and you know what? Next time I might sit and say "go ahead, talk to him, he understands, right?"

TGIF!

I did not tell her off because the place is cute and we will probably go back. Also because sometimes you have to pick your battles. This happens so much to parents of ASD kids. You learn to just roll your eyes or ignore them or educate the nice ones and school the rest iykwim.


She redeemed herself by bringing my son a balloon which he loved and we were on our way.

$14.00 and a $5.00 tip.


Add it to my autism bill please.