Don’t judge me because I…

I saw this prompt on Mabel’s Labels’ Facebook page today and thought it was BRILLIANT!

TODAY Moms & REDBOOK magazine have declared today ‘No Judgement Day’. What do you think of this movement and how would you fill in the blank “Don’t judge me because I _______”?  Here’s the link for the article: “Give other moms a break — today is ‘No Judgment Day’”  

Don’t judge me because I…have twins and one has Autism.  I get judged all the time.  When I tell people I have 6 year old twins, the immediate response is “Wow. One is busy enough. I can’t imagine two!”.  Thankfully for me, my twins were my first so honestly, I know no other way.  In fact, when I hold my friends babies, I feel awkward holding only one. 

 

When I tell people my son has Autism (and honestly, I tell everyone I can; education = understanding = acceptance), I usually get the “I’m sorry” and “I don’t know how you do it”.  I don’t want your pity.  I don’t want you to apologize to me.  I’m not a supermom, I’m just a mom. 

 

Part of my reality is that I scan every new environment we enter to assess possible over-stimulus for my son.  When he has a public meltdown, I can “feel” some people are judging me and my parenting skills, and I’m glad that I’ve gotten to the stage of not caring what they think.  I’ll admit that I’m not the most polite to people (dependent upon age…I still live by the old adage of “be respectful to your elders) when they make a negative comment about what I “should” be doing, but in that very moment, that’s as much as I can manage. 

 

For example, about a year ago, my son had a huge meltdown in a store, throwing himself on the floor, kicking and screaming.  To others, these actions probably look like a regular tantrum.  If it was a tantrum, I would have just stood by him firmly asking him “Are you done this tantrum yet?” until he calms down.

 

What others don’t see is him squeezing his eyes shut, banging the back of his head on the floor, while pulling on his hair.  Those little actions tell me it’s a meltdown.  All I can do is make sure he’s safe, and talk him down from it.  I pulled my hair out of its ponytail, straddled over him to stop him kicking and flailing about so he didn’t hurt himself and others around us, covered my hair around his face trying to get rid of visual over stimulus and focusing his attention on my face.  Then I calmly repeat “everything’s ok, you’re ok, mommy’s here”. 

 

Then I hear someone say “you know, you shouldn’t be letting him stay on the floor like that. It’s dirty.” It took all my energy to NOT turn around and punch that person out.  I sat up knowing that would negate all the progress my son had made to try to calm down, looked this person right in the eyes and told him “I don’t care about dirt! I care about my son not melting down further and drawing blood. It’s Autism. Learn.” In that short amount of time, he had fully escalated again, and I went back to helping him calm down again. No idea what that man did after, and frankly, I didn’t care. I was staring into my son’s face for the next 15minutes, trying to get him to calm down.  By the end of it, I was exhausted, I was bleeding, and he was almost asleep.

 

I’m proud of my kids.  I’m proud to be their mother. You can judge me all you want but at the end of the day, I don’t care about, nor do I accept the judgment.

 

How would you finish the prompt “Don’t judge me because I…”?

You Might Be An Autism Parent If… Part 2

For the last week or so, there has been a GREAT hashtag on Twitter that I’ve been following and retweeting often… “You Might Be An Autism Parent If…”.  I blogged last week with some great endings to that statement, and here are some great new ones: 

• you are dreading listening to your crazy relatives non helpful and misinformed input during the holidays. @tiredx6
• you want to write a book about your “adventures in autism” @JennyBK74
• your worn out by 8 am but know your child doesn’t get back in bed until 9 pm. @richkid947
• you realize at bedtime that you fed everyone dinner but yourself. @MomtoBoyWonder
• watching Christmas movies as a family is an affair that involves trampolines. @TheSlackrMom
• U feel U need 2 educate others about the spectrum & why U R child does what he does. He’s not being rude or bad. @TheJourney_1
• you have to resist feeling smug if an NT child does something inappropriate & your child didn’t @FroggyPrinceMom
• you’re completely exhausted. All the time. @WonderfullyFi

Some of my own contributions:

• you can NEVER run out of Melatonin.
• you always hear “I don’t know how you do it”…he’s my son, that’s how.
• you will always remember your first verbal argument with your child.
• you have been changing diapers for years, and years, and years.

Most of all…

• you simply can’t die. EVER. @JennyBK74, @diaryofamom

 

Our Story – Parents Awaiting Friends Need Friends

Karen’s story is similar to many of our stories…just knowing *something* wasn’t “right”. Knowing we had to listen to our gut, even when others are trying to tear us down and make us believe we are crazy. Persistence is key when you are a parent of a child with special needs. Thanks for sharing your story Karen!

 

We have two children, our oldest Faith is 8, and we have been on a journey since Faith was born.  I guess I knew right away something was different but kept telling myself that everyone is different or it was a faze.  Somewhere in my heart, being a mother, I knew – something was just not right.

Subtle at first, it quickly changed into something else.  When she was two years old, Faith developed night terrors which we could not comfort.  When we mentioned it to our doctor he said she was speaking so it was probably nothing.  Some people around us started to judge us and her – bad parenting and call them temper tantrums. We tried everything to keep her happy and her eating habits became very picky.  Again, we thought it must just be a faze as the doctor says.  I decided to quit working and stay home hoping the one on one help and attention might be what she needed.

I have to admit I was scared for Faith starting school – I could see how she was not prepared for it but I was hoping she would prove that little voice inside of me wrong.  She started school and the night terrors started in waves again.  Potty training reverted backwards instead of forwards and there were many accidents – most of which in public causing more whispers and sometimes just rude comments from others.  I felt like I had failed as a mother – that I had done something wrong along the way. 

There were many meetings with the teachers, counselor and resource people at her school.  It took most of my time and found that it never really stopped after that – just some times of quiet but again they would always start again where we dealt with another “Faith Issue.”  I still wait by the phone and sometimes it feels never ending.

I explained to the doctor about her issues again and again, and would not give up, so he finally he decided to check if she had any developmental issues.  Her developmental assessment finally came back as, “Severe Mixed Receptive-Expressive Language Disability”.  This was explained as a problem with anything verbal, receiving it or giving it.  It was border line Autistic and this was not a full diagnosis though – it’s partial.  I couldn’t believe what I was hearing. 

I went into a brief state of shock while we were talking until I started to cry.  It wasn’t a normal cry however, it was a frustration and dread I had never felt before.  How could they be sitting here telling me that my baby, my Faith, wouldn’t have a full life?  Not a “normal” life anyway.  I proclaimed that, “My child will be the best she can be.  I don’t care if I have to sit every moment helping her get through life but I will not give up.  I vowed to do what I can to make it easier for her and no doctor would tell me my child would not be normal.”  There was no help for this really, no support – I knew in my heart there was more and that the fight was not over.

After fighting for many years, Faith has finally been diagnosed with “Higher Functioning Autism – with a Learning Disability in Math and Language”.  I cried when the psychologist finally said it – not out of shock – but because I have waited so long to finally have a name given to the “problem” that has plagued us for so long.  I could now finally get my daughter some help.  Years of waiting all boiled down to a one hour session. 

I know now I’m not crazy. I felt a sense of validation.  Someone heard me and my instincts were right.  They heard me and saw we needed help.  That’s a huge hurdle for us.  One hurdle out of many.  Sometimes I wonder if we are already too late but even after all of that I try to remember:  Today is always a brand new day, try to smile, keep breathing and people can only give me their observations – I am the one that can choose how to acknowledge those observations and give them meaning.  Love drives us and that will never stop!

Karen Sherman is the Administrator of Parents Awaiting Diagnosis Need Friends.  She can be contacted on Twitter @karen_sherman, or on Facebook.

Google Found Me How?!

Every so often, I just NEED to share with you the Google search terms that result in people visiting my blog. Some are funny, and some are just plain “ewwww!”. Here are some searches that have resulted in people coming to my blog in the last month: 

Under the “Awww!” Category:

• Hugs for growth – still amazes me how much money went into finding out that hugging is a good thing…and getting 14 hugs a day is optimal
• Positive mommy quotes – LOVE that someone found my blog with this search term. I hope I helped!
• Quotes on how to be single and happy – yay! Fake it until you make it, baby!
• Freckles and redheads hot – why, thank you! For some reason though, I think this search might have searching for something other than a mommy blog…just sayin’.
• Domesticated Mommy – ha! Have you fooled!
• Happily divorced – just waiting to file the paperwork…but in my mind, I am happily divorced! 

Under the “Ummm…what?! Why did you find my blog with this search term” Category:

• My son steals my daughters diaper – do I want to know if it was a clean or soiled diaper? Don’t think so.
• Marriage – why on earth are you looking to me to learn anything about marriage? I know nothing…just ask my ex-husband. Wait. Please don’t.
• Babies get high – Should I call Childrens’ Aid Society, or are you? And why on earth would that search term bring you to MY blog? I’m almost offended by this.  For the record, I do NOT support babies getting high!
• Quotes on how to start a relationship – um, again…don’t ask me! I’m shocked (but happy!) my man is still around!
• Don’t like your status – then don’t read it
• Negative single parent quotes – who is researching this on Google? What are you planning on learning?
• I am not your mother anymore – amen, sister!
• I’m not the mothering type – I REALLY hope my kids never say this about me!
• Vaginal myomectomy – ahhh…been there, done that…and am SSOOO glad!  Highly recommend it for anyone with a uterine fibroid.

Under the Ewwww! Category:

• Mom son sexy stories – ummm…ewwww!

What I do find cool though, is when people actually search for different variations of “ImAMomToo” and find my blog – yay!

Motivational Monday – Surround Yourself with True Friends

As with any major change in life, my marriage separation helped me determine who my true friends are, and for that, I feel truly blessed.  Some thoughts about the people we call friends…

 

Fill In The Blanks Friday – 11/25

1.   Waking up at the break of dawn to go shopping is my idea of hell on earth. Why would people choose shopping over sleep?  I don’t get it.

2.   If I were to go shopping today I would be on the hunt for a way out. I try very hard NOT to go shopping unless I have to, and even more so on shopping holidays.

3.  The best thing I ate yesterday was homemade tea biscuits with locally-made apple pie jam.  Yummy!

4. Something I’ve been learning lately is that it’s ok to have a night out with my friends, without having to feel guilty about it, as I did in my marriage.

5.  I cannot start my day without hitting the snooze button a number of times, followed by good morning hugs and cuddles with my kids…and then my morning tea.

6.  My nighttime attire consists of pj pants and a t-shirt.

7.  I am looking forward to this weekend, catching up with friends I haven’t seen in a while – it’s a weekend when the kids are at their father’s…can you tell?

 

Gratitude Project – 11/25

Ironically, today is American Thanksgiving. I hope there are many people realizing how much they have to be thankful for, even if it’s just the small things in life.  Personally, I’m thankful/grateful for the following this past week:

• My son and daughter
• My mom
• My man (and especially his amazing cooking skills!)
• Receiving the first report from my son’s IBI therapy – it sets the benchmark, and develop goals for the next 6 months
• Receiving my daughter’s first report card in French Immersion
• Attending parent-teacher interviews at both of my kids’ schools – my kids are doing great!
• Being able to volunteer in my daughter’s class
• My daughter’s creativity in everything she does
• My sexy mini-van’s tires keeping us safe…phew!
• An event I attended on Tuesday

What are you thankful for?

 

You Might be an Autism Parent If…

Gotta love Twitter! It’s giving me lots to work with in the last week…including a GREAT trending hashtag: “YouMightBeAnAutismParentIf…”. I’ve now “met” so many other Tweeps in the Autism community, I’m really looking forward to getting to know everyone more. The following are some of the tweets I especially appreciated:

You Might Be an Autism Parent If:

• your child has taught you more about love, life and what truly matters, than the other way around. @Soundless2

• you wouldn’t change your child for the world – but want often to change the World for your child!  @helenhamill

• U discover chunk of skin is missing from his pinky & u find the chunk stuck in between the closet doors. He didn’t cry. @yupcom

• “It takes a village to raise a child” takes on a whole new meaning @trydefyinggravity

• you know the difference between a tantrum and a meltdown and can explain it @GPKRacing

• you say “try again”, “use your words”, “first this-then this”, “nice hands”, “good waiting” 1000x a day.  @AutismPinoy

• ifurheart hurts b/c not only does he have 2 overcome more. He also has 2 learn ppl will treat him badly for it  @ErronA

• hearing your child say “I’m sad” makes you secretly happy they were able to express an emotion!  @Calormom

• it is unfathomable to go on an outing in shoes you can’t run in @FroggyPrinceMom

• swings, trampolines &/ or obstacle courses are main pieces in your home’s decor. @Kristin Macchi

• you have heard more often than not “I don’t know how you do it” or “you must be exhausted” #notcomplimentspeople @LLA_Princess (so true! Just makes us realize how tired we are!)

• you know that potty training is a multi-year project. @texascanadasean

My responses…You Might Be an Autism Parent If:

• You can’t secure fulltime work because no one will look after your child afterschool.

• You walk into a new venue and “see” what will trigger meltdowns and overstimulations for your child, whether or not they are with you.

• You explain to anyone new coming to your home that your 6yo son will probably be walking around in his diaper.

• You fake being interested in what “advice” someone who doesn’t have a child with Autism offers because they met ONE child with Autism, 10 years ago, and therefore they know everything about Autism.

• You can’t remember the last time you slept an entire night.

• You LOVE Melatonin!

• You never think you’ll be partnered again because no man will want to take on the extra responsibilities of Autism (and yet I found one!!)

• You put off your own surgery until your child can understand NOT to jump on mommy during recovery.

 

Our Differences and “What Others ‘Think’”

 Leisa has a creative and artistic teen daughter with Autism.  She’s also made me aware of my new favourite term: “seminar slutting”…I’m so guilty of that!  Here’s Leisa’s story:

As I’m writing this, I’m sitting in the dentist’s office waiting room. Grace, my teen daughter with autism, has been called back. I’m listening to the mostly unintelligible moans turned screams of an elementary school-aged boy, who, at the glance I stole when he dashed out the waiting room door into the hallway–a tired-looking, but patient older sibling following quickly behind him—has Down syndrome.

Places like this, when I am face-to-face with other parents perched on over-cushy sofas, waiting like me, I am confronted, as are many special needs parents in such times, with the perceived differences between my life and theirs.

Today I wonder, not for the first time, what they make of our lives. What do they think of my daughter? What do they think of me? Do they feel pity? Disgust? I don’t spend time caring enough, generally, to notice if they are staring or purposely staring the other way, though I’ve seen both enough to know it happens. Frequently. I cannot not notice. It’s often in my line of vision most places we go in public. My daughter’s autism is moderately severe. Her communication skills are fairly impaired. She’s beautiful. She’s happy. And obviously very different, which one would generally notice upon more than a 10 second glance.

I’m extremely grateful for the years I spent in therapy and for all my seminar slutting I did before Grace was diagnosed and since. One of the most helpful tools I ever came away with from the transformational weekend experience, More to Life, formerly called Life Training, which I did 20 years ago, is this take-home message:

We don’t really know what other people think. Sure, we can intuit. We can choose to obsess. But, what we think and obsess over may not even be real. Our intuitions may be off….Their mind may be so clouded with their own problems they don’t really notice the differently abled child in front of them. This is often the case. So is the other—noticing. In the end it comes down to me. (And, you–if you are in my position in any Life situation)….We cannot control what others think of us. Nor, really “should” we care. Sure, ideally, we live our lives with integrity and kindness, doing our best and ideally that is communicated to others through our words and actions. And that’s the best we can do. Others judge us? (Or not.) So what? Really.

The Buddhist teaching of just being Aware and then not attaching is something I’ve learned over the years in the meantime.  But starting out, I would pull out these questions I individualized from my Life Training [More to Life] experience for those times when it was my child was the one running down the hall or making unintelligible sounds….

These strangers that I think or I KNOW truly for sure are looking at us…They don’t know me. They don’t know this is autism. They don’t understand. They do not live my Life. And regardless, I don’t care what they think.

I don’t care what they think…because in the end it comes down to what I think of me. I’ve got enough baggage of my own with the sheer facts of Life, atop Autism. I don’t need anyone else’s…or anyone else’s presumed baggage crowding my mind.

And the father at the dentist’s office–the father of that little boy named Charlie, as I heard him called? He didn’t seem to care either. Good for him. It’s called Coping with the Journey. And it’s a fabulous and mandatory skill. There are far too many other hurdles on this ride requiring our spiritual, emotional, mental and physical energies. Carry on. Release the presumptions. Unpack your bags and as they warn you at the airport these days, don’t pick up anyone else’s luggage. Namaste.

Leisa A. Hammett is a speaker, advocate and author of  From Heartache to Hope: Middle Tennessee Families Living with Autism. She is working on her second book about autism and blogs at www.LeisaHammett.com  “The Journey with Grace: Autism, Art & All The Rest of Life.” In 2007, she appeared on the autism feature segment of ABC’s “The View,” which recognized her daughter’s art (www.GraceGoad.com).

 

Meet Me On Monday – 11/21

 

Thanks Momma T and Baby E again for this prompt!

1.  I wish I had more time to read, blog, sleep, spend time with my friends.

 
2.  What is your favorite kind of soup? I make a great pureed spicy lentil soup, but don’t make it very often, purely because my ex got the food processor in the separation…but, to be fair, it was his to begin with.

3.  Where will you eat Thanksgiving dinner? Thanksgiving already happened in Canada (in October) so the kids and I had a big Thanksgiving dinner at my man’s home, with his family and friends. It’s a very busy weekend that weekend for us because it’s Thanksgiving AND there are two birthdays.

4.  What is your favorite time of day? It may sound horrible but, my favourite time of day is after my kids are both in bed and asleep. Our home is finally quiet from the day, and I can do all the puttering around I want/have energy left for, or just pop in a movie and wrap up in a blanket to watch a movie.

5.  Did you start Christmas shopping yet? Yes. I’ve bought a few gifts already…there’s no point in waiting until closer to Christmas.