This is Gabe at chuck e. cheese for his birthday in 2009.
Sometime last week my facebook status read:
Saturday is Gabe’s first birthday party (with other kids)…. We’re BOTH looking forward to it…
…and we were. This was his very first social event amongst his own peers, some from school and some from the birthday girls’ other friends and family. I was so, SO excited. He talked about this party almost every day in the weeks leading up to the day. He’d say that him and (I’ll say Helen) were going to do this, were going to do that, until I realized that he never mentioned anyone else. So, I started to bring in the idea, “Honey, you know that there will be other kids there, right?” ”Remember Gabe, this is a party. There will be other kids from your class there. Helen will have her family there,” and so on. He never gave me a hard time, never said he didn’t want to go, still talked about the party.
So, the party was held at Chuck E. Cheese. Gabe loves to go there and has been there several times, enough times to be comfortable there. We’ve been there mostly on weekdays, after school and the place is pretty tame. We’ve also been there on weekends when the numbers of running, screaming kids multiply like nobody’s business. Still, he never seemed to have a problem. THIS day, however, there was a problem. A BIG problem. I could kick myself in the ASS because I let myself be lulled into the illusion of normalcy.
On that day, Gabe started to say that he was going to sit near me. He said that he was going to play the games that were near me. I kinda did get the impression that he was getting nervous but I told him it would be okay and of COURSE I was going to be right there… which I WAS going to be right there. How involved I was going to be in his activities I was going to leave up to him. Then right as we pulled into the parking lot, he asked me if I had headphones. Again, I saw a red flag and I chose to ignore it because, well, we never used headphones for him, but I knew that he used them a couple of times in school. I just said, “You know we don’t have headphones.” I don’t know. I look back now as if I could have done something, but really, we would have still gone inside. I kept telling myself that he was really excited and looking forward to this party.
Oh shit. I know I shouldn’t beat myself up over this, but I should have known what it was going to be like inside this place, on a Saturday, at a birthday party for seven and eight year olds. I was so looking forward to this being a normal, great milestone for my kid. Okay, I will just list the conditions that awaited us.
- A very busy Saturday. There were kids running around, screaming and it was just too overwhelming, even for me. I did mention that we’ve been to chuck e. cheese on Saturdays but this was crazy.
- The reserved area for the party, nay several parties, was situated right in front of the stage and speakers, blasting music. I mean, BLASTING. This is something I did know. I’ve seen parties there before. Again, kick me.
- Flashing lights and several monitors going at one time. Again, I know this yet I didn’t think of it being an issue.
Any one of these is pretty annoying within itself, but I did not think of the effect on my son, let alone ALL of these at once. I feel like such a horrible mother right now. We’ve been getting really good, positive feedback from school and the social skills groups that I, plain and simple, let my guard down. I let others, Gabe, and my desire for just a normal life interfere with protecting my son. Monster Mom. I was actually looking forward to his next birthday and the possibility of being asked for a party… AND thinking that chuck e. cheese was a good idea. Oh Nooooo.
I found the table for the party and brought Gabe to at least show our faces and say, “happy birthday” to the little girl. I spoke with the parents and they were really understanding about the whole thing. I urged Gabe to say hello, but he was totally shut down at that point. Sigh. Attempting to teach manners through a sensory shut down? Yeah right, hello? Hello? Then we left. All he did manage to say was that he wanted to go to a “nice, quiet place,” so I took him out to the car and we sat there for a little while until he started talking more to me.
The blessing of children is that they will look into your soul and love and trust you no matter what. He just said, “I told you, mom!” Yes Hunny Bunny, you did. I assumed he was talking about headphones because, really I could’ve used them, too. I know that this is a learning moment for me and I am still soaking up that lesson. People will say to learn and move on… and I will do that. But part of that lesson is reflection. Absorbing how my actions or non-actions affect those around me, especially when I make decisions regarding my precious boy. It was our first such party and I guess that in the future I will need to do some research to scope out the situations…. Yeah, my kitchen will be my Situation Room where I plan my strategies.
My New Strategy
chuck e. cheese is not a good idea for Gabe’s next birthday…… period
This is Autism Awareness Month and my boy is autistic.
I don’t say that to draw attention to my son being autistic. I write that to draw attention to Autism.
Every post from now on in the month of April, I will start in this way, regardless of content. I’ve not done much this year I guess because I’m not a good planner, so this is the least I can do. I have blue shirts and blue nail polish and briefly I contemplated dying my hair blue; but ya know it has no effect if I don’t leave the house. Sometimes I wonder if there are people out there who will read this and listen…. especially people with the power to change things. We’ve had little victories here and there, but in general I am disheartened by the apathy of the education system. It’s either that they don’t give a damn, or maybe they are in a comfort zone they fear to leave. They have a system and this autism thing just throws a wrench into the works and screws them all up. I can tell you that when our school decided to form a social skills group, it was on the fly and they don’t even know if they’re doing anything right yet. I was told that they are creating it as they go along and while I’m glad that they are trying, I’m
a little a LOT worried about how successful their efforts will be.
Well, God will answer our prayers. In my case, because I’m not good at praying, He sees into my heart and knows what I need even before I know and I trust that. I received today in Gabe’s backpack, an envelope from his Speech teacher. Inside was a press release from the Union County Office of Public Information, announcing a new Sensory Friendly Theater series of performances specially designed for children with autism and related disabilities at the Union County Performing Arts Center in Rahway, NJ. The notice is entitled: “Union County Offers Theater Program for Children with Autism and Related Disabilities.” This is what caught my eye:
The new series, which begins on June 10 with Tom Chapin and Friends, is designed according to guidelines that help to reduce disturbances for youngsters who experience heightened sensory sensitivity. The Performing Arts Center is committed to a creating a judgment-free zone with plenty of trained specialists who understand autism and similar disabilities.
A sports program for the autistic child, it is not; and I personally would LOVE such a sports program. Seriously though, I wouldn’t care if this was a special program for making 10′ snowmen on a hot July afternoon. I’m in a state of elation right now because these are exactly the types of considerations our kids absolutely need in order to benefit from their participation. Adults who have training and understand autism (and similar disabilities) are absolutely essential for a successful program such as this. There is a lot more to this notice, but I keep coming back to the above words: “judgment-free zone, trained specialists, understand autism.” The sad fact is that our school professionals are officially none of these things. Let me just stop right here and say that this in no way diminishes the teaching abilities of these professionals. I think, as teachers, we are very lucky to have who we have, however….. My experience with school professionals working with my boy: Compassionate, yes. Patient, yes. Accommodating, yes (so far). But even our Special Ed teacher is not trained to understand autism. Why is that? Well, she got her degree way back in I don’t know what decade and has had no other education to bring her uptodate on Autism or any (similar disability)… umm that really, no, REALLY doesn’t sit right with me. I think I can be fairly certain of that because I’ve asked whether she had training and I never received an affirmative answer or any qualifiable answer. Soooo, what would you think? I’ve advocated to the principal, political candidates for office who come to our door, and anyone who’d listen, and even at a town meeting that it’s imperrative that our teachers be educated to understand autism. I feverently believe that it’s not just unfair to ask our children to be put into a classroom with adults who don’t understand them; but it’s also unfair to put teachers into that same room with the knowledge, tools and strategies to educate these kids and navigate the myriad of possible disruptions that can occur. So you see, I have reason to feel disheartened. Anyone who comes to this door will continue to get an earful and I suppose will regret knocking on our particular door…. oh well. SO to get this news today gave me a little hope.
I’d also like to share with you the person responsible, Union County Freeholder Chairman Alexander Mirabella. I won’t replicate the whole announcement here, but here is a link at NJtoday. If you’d like to call for information, here the number to call: 732-499-8226… OR here’s the link to Sensory Friendly Theater web page
Last night my head was swirling around with ideas, but as always when it gets time to write them down, I’m a blank. So, I’ll do what I always do, write. Write down the strands of thought that surround my head like a maiden’s soft, light hair that moves with the breeze in a surreal kind of way. Yes, I’m awake and hope you have the inclination to stay with me.
When we first leaned that our boy was autistic, I was devastated. For him and for us. We were new parents, well not “new” exactly, but he is our first and only one, which will probably remain that way since we are in our early and mid fifties. We didn’t think we’d have him (if you’d like to read those details, you can look here) in the first place, so after seven years, I’m not so sure that God has another one in His plan for us. In a way, I’m relieved as it would be a hardship, both financially and probably physically; but I do wish that our Gabe could have a brother or sister. Not too long ago, he’d ask for one, almost constantly; and even now, he looks at my belly and asks if I’m pregnant…. oh boy. Which reminds me of a most embarrassing couple of moments over this weekend at a hotel we were staying at for a wedding. We walked by the hotel’s lounge and there was a man there with a huge gut. Quite out of the blue, Gabe said, rather loudly, “Hey MOM, that guy’s PREGNANT!” Well, I tried to ignore what he said which was a pretty bad mistake as he kept repeating himself all the louder because he didn’t think I heard him the first time, “MOOOM….” It was all I could do to muzzle him and get him out the front door. I tried to explain to him that saying things like that were inappropriate and tried to explain the concept of being insulted… think I failed with that, too. This has not been the first time he’s brought the concept of men being pregnant as he has frequently expressed his belief that HE was pregnant just because he ate more than usual, gaining a pretty big belly. He’d lift up his shirt, pointed to his belly and say, “MOM, I’m almost pregnant~!” Now, THAT was funny. Still, I had a hard time explaining that men and boys do not get pregnant, only women. He’s not asked me what exactly that is “yet”, and I’m grateful. After I thought I did a decent job explaining that men do not get pregnant, I was validated because the next day, we saw that man again and Gabe said (all too loudly), “MOM, there’s that man with the BIG belly~!” Um… Yep.
Still, the incident, not surprisingly, had me pretty upset even though I tried not to impress that upon him, I’m sure that I did. I’m maybe too obsessed about weight, or looks being singled out for laughs. I’m quite positive that wasn’t the intent, but I’m still pretty sensitive to that and don’t want Gabe growing up, insulting people no matter what the intent. He needs to learn this very differently than most kids do. Even though we know that autistic children can learn social manners, it’s not so simple. They do not pick up on social cues like the rest of us can, instinctually. They need to be presented with the concept and they learn it much like an academic lesson in school and they need to practice it over and over. They may never empathize, but they can learn to understand intellectually how important it is to learn and practice; but they may never truly “feel” that importance. I’m not even sure that Gabe will ever learn to walk in anothers shoes, which has always been important to me, in my learning. I always felt the need to REALLY understand things and, indeed, I’ve rarely followed through with anything unless I truly understood to my own satisfaction the importance of whatever it was.
WHAT ARE SOCIAL SKILLS?
Social Skills are a set of behaviors that allow a child to get along better with other people. A child with adequate social skills can adjust well to changes in his environment and can avoid verbal and physical confrontations with other people. A child who has poorly developed social skills, however, may have poor self-esteem, may display conduct problems (fighting, arguing, defying adults), and may have difficulty developing peer relationships.
WHAT IS A SOCIAL SKILLS GROUP?
Social skills groups focus on teaching children a variety of social skills to help improve their ability to make and keep friends, develop more self-confidence, and behave more appropriately. Role-plays and group interaction will give the children opportunities to practice these skills during the group session. The therapist will utilize behavioral reinforcement to promote rule compliance, participation, and use of appropriate social skills, while also encouraging and reinforcing the children to practice these skills outside of the session. Objective information regarding the children’s behavior will be gathered before and after the group to measure the children’s progress and parents will be provided with written feedback at the conclusion of each group.
We are truly blessed to have gotten Gabe into a social skills group. Please see the above for a good description. This is where they learn behaviors which are so-called socially accepted behaviors. The problem is that though they may try to interact with their peers, they never learned how to do that, as other children have learned and that is by picking up on the silent social cues and body language. They don’t intuit what is the appropriate, recognizable response or non-response to what the other child/peer displays. Also, Gabe’s group is a group of peers. They see it as play and I’m sure Gabe thinks it’s a play date.
Gabe is seven years old now and maybe that’s too young to learn about how/why a person can be insulted. I ended up repeating myself about the man maybe getting insulted, but then I realized that he probably has no what that would mean. I am dedicated to keeping open communications with him. He knows that whatever his question is, I will listen and I am frequently urging him to share his thoughts. He knows that I will urge him to just tell me his thoughts. Most times I’ve got to admit that I don’t really understand what comes out of his head, but I’ve learned to ask questions so that he’d have to elaborate on what he’s thinking. I’ve also had to learn when to just let it be when that doesn’t seem possible. Sometimes I grieve for the lack of communication and understanding. Lots of times I feel a total disconnect. I grieve because I’ve always dreamed of being a mom much different from my own mom. She was totally unapproachable and I never opened up to her or she to me. My dream was to have a totally different relationship with my children. Open communication all the way. If you can’t do that, what the heck kind of relationship IS that, anyway? I am learning that Gabe conveys more to me than words ever could. He is my teacher and has been from the first moment he took his first breath. That is a post within itself. So, Gabe is teaching me that not all relationships are the same. Huh? Didn’t I know that already? Apparently not.
One last paragraph. There are so many facets to Autism. Just like the disorder, itself, there are so many areas of specialty, so many areas that really need to be improved, that really need the attention of the professionals and people just like you. It’s totally overwhelming, so I take it in little bites. The area I find myself focusing on lately is how badly our teachers NEED to be educated about autism. Yet, our schools will fight to the death to stay in denial. They refuse to acknowledge that intervention services are needed for the autistic child to get an “appropriate” education. Forgive me, but mention the word “quality” and “education” together and you can kiss any intervention service good bye. Does that make sense? I have to ask because I’m not college educated, you know. Total idiocy! No matter how much compassion a teacher has, if he/she is not trained to recognize and deal with any problems that arise, not given the strategies they need to handle the tough situations, they will just end up feeling frustrated and might even label a child with a negative label, even… YES… even the label of BULLY. This of course, would most likely stem from ignorance, but does anyone want this to happen? I know I don’t. My own son could be labeled as a bully because he tried, in his own “socially unacceptable” way, to make friends with another boy or just trying to get someone’s attention, again in his own way. Maybe that need for attention was misinterpreted as bullying…. and I do see how that can happen. I can see my son being confused and feeling rejected and may be even push the other kid in an attempt to gain their attention and maybe friendship. Nobody and I mean nobody would see it that way in the mainstream world. I’ve been through a rough patch lately with a mainstream mother verbalizing in front of me that she would not want her typical kid in the same class as my little guy. That hurt a LOT. It was only after a lot of hurt that I realized that she was probably severely uneducated, maybe misguided even as she strives on a daily basis to project her highly educated personality. The sad fact is that EVERYONE is in dire need to be educated, teachers, typical children, typical moms and dads. So, maybe my focus should be on wholesale education for everyone… you can’t be overly educated, can you?
Don’t be afraid. This is just me from this past Halloween and I totally enjoyed making myself up for the day. Now, it sort of fits my feelings. This post will be written as a specific comment for Jess’ post on “Diary of a Mom” blog in which she chronicals her family’s experiences, specifically with autism. I am responding to her post entitled, “I See Myself”, without taking up too much space in her comments, which is kinda inevitable at this point as my middle name is “Tangent” and at least here, I can go as far away as I want… hee hee. I almost did not read it because I’ve been rushing through my delayed morning routine which is to go through my morning emails and community sites I frequent before getting into much needed knitting this week. I read this post and saw myself and had to stop myself to breath. I am forever seeing myself, as she has. I’ve seen myself even before my son was diagnosed, but never knew it to be Autism. I mean, I see myself as being fine. Different, but fine. I grew up in the sixties and if I were diagnosed back then, it might have been for retardation, not autism and my life would most certainly be very different…. I don’t like to think about that. As a matter of fact, I don’t like to think about anything. As far back as I can remember, I could just sit there for hours, just staring off into space without a single thought. I still have these times, but not as much because, I suspect, solely because I have a computer with internet. Games? NO… My vice is just surfing from one site to the next without much thought or concentration. I LOVE information, and that is what I get though I rarely take the time to read each thing through… really. Wow, sort of the same thing except it’s external.
Jess, I know what you’re going through. The difference is that I’ve lived my whole life painfully knowing that I was strange, weird; and it was unexplained. I yearned to be normal, accepted as normal, make friends and be comfortable with them. I was acutely aware that I should look people in the eye, yet never could seem to get my eyes to accept my will. People judged me as being stuck up. Stuck up? I wondered how anyone could think that when I lived without the “things” in my life that I thought were instrumental for that assessment in other people, people I judged…. and it went on and on.
Eventually, I learned to compensate, but I was always criticized, chided by family for not seeking out peers, for being a wallflower, for never “making an appearance” when we had company in the house. I’d spend summers holed up in the basement, pursuing my interests, instead of being outside with the other kids on our block. I had a miserable school experience (I always have to add that in), but then later on, when I started working, I realized that I would meet people that didn’t know me and I could be whoever I wanted to be. I did that, but I soon realized that I’d have to spend time with friends if I wanted to HAVE friends… lol. How was I going to do that if I could not even hold a conversation without stuttering, without running? To this day I absolutely love to entertain gatherings, I find that I have a LOT of things to do in the kitchen, away from the people. It’s my refuge in some ways. I’m comforted by doing, preparing food and serving. This past Christmas, I was almost bodily forced to sit down with my own family.
I can remember one New Year’s Eve party. I was with a bunch of people, most of whom I did know. This was in the late nineties. I can remember not wanting to be the center of attention, I was cringing, I was frantically looking around, I was on the verge of what I can only assume was a melt down. I was shaking with pins and needles exploding into my skin. The irony of this is that I definitely was NOT the center of attention. As a matter of fact, I was not being noticed at all, a fly on the wall, sitting at a table, all alone. Yet, I burst from the room, into a bathroom stall–pretending. I was in my mid thirties and it was this night that, after 5 minutes or so, after the clock struck midnight, I first forced myself out of there to intentionally mingle. I tried to look normal, but felt far from it. I left soon after, but still, this was a good idea, I thought. I could accept and allow myself that social break when I needed it, but after 5 minutes I’d come back to people.
My own flashbacks include my dear hubby from the time our son was born, routinely would almost force me out of the house at least once a week to get out and take time off away from being a mom. He never wakes me up to get our son ready for school. Does he know something even from way back then that I am totally oblivious to? Believe me, he has his own demons, yet he either strives to make life easier for me OR he is merely sticking to his own routine which is so deeply embedded inside him. I like to actively believe the former. Jess, to this day I’ve never made it to the doctor’s office to discuss this possibility and probably won’t for a good long time. Heck, before my son got diagnosed, I thought I would be judged as a hypochondriac. Jess, that took a lot of guts and I’m inspired.
Last year I read “Look Me in the Eye: My Life with Asperger’s” by John Elder Robison (little did I know that, at will, I would remember and spell his name correctly) I linked to the author’s blog. I don’t like it that Amazon has a monopoly on book links. I’d rather give the reader a little more than just the obvious. I gained a lot of insight into my son and myself from this book; and hopefully, it’s the template for future insights into myself.
Not sure if I should continue so I’ll stop dead in my tracks. It’s been my experience that I will repeat myself over and over, word for word because I wasn’t sure if I had anything more to say, but just felt that I should keep talking… and well, got nowhere for that effort. Oh maybe I got somewhere. I zeroed in to the Weird Zone.
edited to add:
Okay, of course immediately after posting, I decided that I’m not finished talking. There IS more I’d like to say. More about how I’ve adapted and more about the positives. Maybe these ideas belong in separate posts, so this is a good thing……
I’ve been meaning to post for the longest time, so now here I am. I am always trying to be witty and write about things that are interesting. Well, that strategy bombed. I guess my kind of blogging needs to be inspired and will aspire to be informative; and most important of all, be positive, though that doesn’t always prevail… hee hee. SO.
Recent events have me overwhelmed, confused and muddled. So I return to my keyboard in an effort to try to sort through it all. I am inspired, but really need to get disciplined if I want to get to my goals… the goals that are starting to take shape in my mind. So many things have been going on, but right now, for this post, I will blot all of them out except one.
On December 20, 2010, my son, Gabriel, was diagnosed with Autism Spectrum Disorder. That’s quite a mouthful for my mouth and my brain. So much has changed from one moment to another. I am suddenly confronted with life changing news (for a lack of a better word). Now, I feel, I must truly live up to my moniker, “the DragonMommie”… mother bear, demon advocate. I think that the most scariest thing is that now I need to be a proactive, very assertive, if not pushy advocate for my son who has special needs.
My whole life has been spent in the background, going along with others’ decisions. Now, I need to step to the forefront and be the one making those decisions. I’m seriously not sure I can do this. BIG sigh. I. am. so. scared….. for now. When I read that over, I realize that I’ve always been right there to look out for Gabe and make sure that he’s cared for and safe, so where is the big difference between then and now? The difference is that now I need to get an education and get it quick. I need to become an expert in a whole new area with its own language, rules and laws. I need to become an expert in researching all this new material and organize it in my head and on my laptop (no small task). I need to learn the unspoken cues. I need to learn the right words to use to be politically correct. I want to be active, informed and I want to use my talents to benefit these kids.
What do I know right now? I know that my son is not any different today than he was a month ago, two weeks ago, two days ago… yesterday. He is still the same amazing, loving, affectionate, smart, funny little boy. What we have now is additional information. We can now give a name to the reason why he acts a little quirky sometimes. He is growing and my husband and I are growing also. We are growing as people and as parents every single day. This was true before, but we are now getting a higher education in love and understanding. We’re far from perfect parents, but I feel that with this added understanding will come not just tolerance, but acceptance for what we cannot change. A determination to provide the highest quality of life that we can for our son. I can say already that miraculously I have a lot more patience with undesirable behavior I previously perceived as being defiance. As a mother, I am determined to learn as much as I can about what is really behind this behavior and how I can teach my son what is appropriate behavior and what is not.
What I know right now is that this condition, disorder, disease… whatever you want to call it, I realize can be such a blessing. First and foremost, our son is a miraculous gift from God and there is meaning in everything He does. We are now officially out of the realm of being a “typical” family. So much can be missed when living a life, day after day, in the mainstream. We are now blessed with a life where we are forced by these circumstances to a heightened sensitivity to what is going on with our child. We are looking at every aspect of his life, with new eyes, eyes with a purpose. We are enjoying the little things. In an effort to gain understanding, we talk to him trying to see what makes for good social conversation. We make sure we include him, age appropriately, in some decisions. We give him choices. Well, I know that a lot of parents out there are doing the same thing and I am not trying to be critical, but it’s so easy to just take over completely and dictate every single aspect of a child’s life. My parents definitely did that and it was no fun and I came out of it with little to no self esteem or confidence. It’s so important for a child to feel at least some control over his life, his body, etc. and it’s up to us, the parents, to allow that to happen… even if it’s just a choice between broccoli and string beans… an age appropriate choice.
I feel good. I think I’ve been somewhat successful with this post. I did not want to make it fancy with links and pictures. I wanted to focus solely on my thoughts. I’m sure future posts will have pictures and links because, well, that is my thing. Next post will include some links and info.