Scattered. Space Cadet. Flake. These are all terms I'm sure have been used to describe me. Maybe because over the years I've backed out of more than my fair share of commitments. Its gotten so bad that I now run when I see a well-intended parent seeking volunteers for some good cause.
Its not that I have a fear of commitment, its just that I can never commit. If I do, the Murphy's Law that is my life automatically kicks in and all hell breaks loose. Either there's a meltdown, a rage, sheer exhaustion or all of the above involved. Lets face it, these tend to get in the way of making 100 cupcakes for the school play.
Then I'm left to make that awkward phone call telling the nice organizer I can't do whatever it is I'm supposed to do. This is followed by the equally awkward silence or heavy sigh as the person on the other end of the phone expresses their obvious displeasure with me.
Its during these times that I really wish I could scream at the top of my lungs, "Don't you get it, I have REAL problems here." But since I don't make a point of advertising our situation, there's no way for those in the outside world to know. To them I look like any other mom -- one with messy hair, more than a few extra pounds and no make-up yes, but pretty average all the same.
So, how do I keep getting myself into this situation? Because deep down I want to help. I'd like to be the one helping others instead of the one accepting it all the time. In my dreams I fancy myself the room mom, the cookie mom, the church volunteer. Then my kids could remember their mom as the one who was always involved, always there to lend a helping hand, instead of the one too harried to brush her teeth.
The solution? I have a few ideas brewing. I'm toying with the idea of sporting a sign that reads something like: DANGER: SPECIAL NEEDS MOM. APPROACH WITH CAUTION. Or maybe I can just hand out cards describing our present catastrophe. The problem is, after reading a few lines of what our average day is like, I'm not sure anyone will believe me.
That's what happens when you have children with hidden disabilities. They "look" normal, and for the most part can act normal too. So even if you do 'fess up, many people will look at you in total disbelief. Then starts the minimization. "Oh, it can't be that bad." Or, "honey, all kids go through that phase."
So I think the next Super Mom who corners me in the parking lot asking if I could "be a dear and....." will just be given a link to this blog. Maybe then she'll find a little empathy for my scattered brain. If nothing else, it will give me a good exit so I can wallow in my flakiness in peace.
I am the mother of four children -- a teenager, a toddler and tween twins. My twins both have their "issues", one with Asperger's Syndrome and Bipolar, the other with Bipolar and ADHD. This means our house is anything but quiet and reserved. I also write a blog, Raising Complicated Kids,that chronicles our experience with our not-so-average family.
I met someone the other day and asked her how old her cute toddler was. She couldn't remember. When she told me she had four kids, including a child with a major special need (rare physical disability), I got it. She was carrying around so much other information in her head she had no room for immediate recall of her toddler's age.
ReplyDeleteIt's so hard when they can't see my son has issues because the autism is invisible. People wonder, "why does she spend her summer inside?" Because here he doesn't wander off. Duh. And yes, that means I lose out on all the adult conversations that happen on the block, and those often help keep a person sane.
So, in short, I agree.
Hopping over to your blog now.
Roger,
ReplyDeleteSince my son was diagnosed with both Asperger's and Bipolar I started reading up on the incidences of both. Actually, its quite high -- if my memory is correct I think around 30-40% of kids with autism have some comorbid mood disorder.
A doctor once explained to me that when the wiring in the brain is off in one area it is many times off in others as well. Unfortunately, the Asperger's complicates the Bipolar and visa versa. Makes life interesting to say the least.
Diagnosis continues to be tricky though because there is so much overlap between autism and other diagnosis like OCD, bipolar and ADHD.
My thoughts and prayers go out to you and your sister.
Jean
I know exactly what you mean. I think it pays to be firm although I'll freely admit that I've often over-extended myself in the hopeful optimism that time will magically expand. As yet it hasn't. If anything it's become even more tightly packed although that's not because of autism but because my mother in law is now living with us too, that makes 8 in all.
ReplyDeleteI've learned to say 'no' with a smile. They don't understand but I don't expect anyone to understand who hasn't experienced this kind of life not just for a few hours, but day after day, because people can't slip into our shoes and 'get it.' Maybe my expectations have slid a little as to 'awareness' over the years.
Regardless of that, I still think it's o.k. to say no and stick to your guns.
My name is Melissa Winter, and my oldest child is Autistic.
ReplyDeleteWhen we were given the diagnosis, we set out searching for the best doctors, teachers and therapists we could find. We knew he would need highly specialized help in order to be able to make it in our society. We were lucky enough to find an amazing school for him and he is thriving! He and so many other children like him are able to learn how to function despite the barriers of Autism because of centers like the one we found.
I am passionate about the work our center is doing to help our kids and wanted to be able to make a difference. I designed this glass puzzle piece necklace to help do just that. (See picture attached) A portion of our profits will be donated to The Slomin Family Center For Autism and Related Disabilities. http://dreambuilderscampaign.com.
The purpose of my letter is to offer “The Puzzling Piece” to be used as a fundraiser for your organization too. The wholesale price of our necklace is $10.00, with the suggested retail price of $20.00. Your organization makes a $10.00 profit from every necklace sold! Please visit our website to learn more about “The Puzzling Piece” and how we can help your organization grow as well. www.thepuzzlingpiece.com. I can be reached for further information at 201-602-0547 or my e-mail address is info@thepuzzlingpiece.com.
“The Puzzling Piece” reminds me that I am not alone, and that we all can make a difference! There are so many pieces to the puzzle of Autism. Our necklace represents just one piece, and how important all the pieces are. It’s not just art; it’s a statement!
Every mother of an autistic child knows how hard it is to solve this puzzle. Help me show them that together we can!
Best regards,
Melissa Winter
201-602-0547
info@thepuzzlingpiece.com
I know exactly what you mean when you say people just don't get it or they think you over exaggerate. For me i dont have people ask me for much cause im a single mom with two little boys. I dont leave the house much so its hard to get cornered lol. But i can definatly see where your coming from. I am going to go check out your blog now :)
ReplyDeletei can relate to this!!! i have 4 kids - one with autism and another with severe allergies.....life is unique! hard! but hugely funny!
ReplyDelete