I Gave my Love...a Colander?

My dear husband is not exactly the best gift-giver. So,weeks before Christmas, I usually start hinting to him about potential gift ideas for me. I'll say things like....

"Gee Hon, did you see the lovely earrings they have at the jewelry store in the mall."

or....

"There are so many new books at Barnes and Noble that I'd just love to read."

But over the years, I have learned that this tactic is not an effective one.

I struggled for a long time trying to understand my husband's lack of ability to understand "hints". Was he just being stubborn? Were the items too expensive? Did he need to have his hearing checked?

It wasn't until my son, Weston was diagnosed with ADHD, that I finally learned how to understand Pete.

I am not a doctor but after listening intently to our pediatrician discuss the intricacies of this diagnosis and after researching every book and professional article ever written on the subject, I am now convinced that like my son Weston, my husband, Pete, also suffers from ADHD.

His lack of ability to understand hints and innuendo, his need for constant movement and activity, his love of video and computer games, his impatience, anxiety and impulsivity, all these symptoms now make perfect sense to me, thanks to my eldest son.

It wasn't until last Christmas that I received an official confirmation.

There under the Christmas tree was a large box wrapped with beautiful holiday paper. It was addressed to me. I was stunned, what could it be, I thought to myself? I was so happy that my husband had finally thought of me. He had actually put a lot of effort into wrapping the present, as gifts from my husband usually come in plain white envelopes or wrapped in plastic shopping bags.

Was it a music box, maybe a snow globe, a lovely figurine?

"Nope," my husband said. I would just have to wait.

Christmas morning finally arrived and I opened the present quickly, anxious to see what my unusually thoughtful husband had so carefully selected for me. I ripped off the paper, tore open the box and starred at my present in disbelief as there inside the box sat this....

an ordinary colander

I looked curiously at my husband. Was this a joke? Was my real present cleverly concealed underneath this kitchen utensil? No, nothing underneath....

My husband looked at me and smiled, quite pleased with his purchase, certain that I was going to love it. Now I must admit, it IS the most beautiful colander I have ever seen. It is shiny and metallic, almost too expensive-looking for draining pasta or washing lettuce. It actually sparkles under the light.

"I know you needed one," Pete said, "and this one just looked so pretty. When I saw it, I thought of you."

It was then that I realized how fortunate I truly am to have this wonderful man in my life.

 

He does not place value on material things. He does not try to impress others. He sees the beauty in things that may appear ordinary to others. But most importantly, he knows just what I need. Whether it is a long silent hug, some straight forward advice or just a single comment that breaks my tense mood and makes me laugh.

 

By embracing the beauty of this simple colander, he made me realize that he is the perfect father to our two children diagnosed with special needs for he truly sees what others cannot.

I realized that like this ordinary colander, I too am an ordinary Mom with an ordinary function. But to my husband I am not like this colander because it is ordinary, I am like this colander because I am an ordinary Mom who is also bright and shiny. To him, I sparkle, to Pete I am one-of-a-kind.

I use this colander a lot. And every time I do, I laugh out loud. I think it is hilarious how this shiny, beautiful, ordinary kitchen utensil that I use every day is what made my husband think of me.

Now while I do appreciate my one-of-a-kind colander, this year I have a new tactic for Christmas, I am just going to hand him a picture of this:

I hope this time, he gets the hint.

 

Wishing you all a very Merry Christmas and a Happy New Year



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Lisa Peters writes about family life at www.onalifelessperfect.blogspot.com. Thank you all for reading and supporting us throughout the year.

This...as we enter the New Year, may we all have an abundance of these...

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Julia Roberts recently shut down her personal blog Kidneys and Eyes after 9 years and focuses all of her blogging time on a community she co-founded, Support for Special Needs. She loves long walks on the beach, Diet Coke, and naps. Married to Julian for nearly 20 years, they laugh at their life a lot. 

Do I say?

One of the hardest things for me to answer to myself as a special needs parent is, "When am I supposed to say something?".  I mean, do I advertise that Ballerina and Music Man are Autistic?  Am I simply making excuses?  And does anybody really care?

When our journey was just starting out, I would tell everyone anytime we went out in public.  You see, it wasn't often that we WOULD go out in public and I would be in a situation where I needed to explain their behavior.  But, as we all got used to things and I started learning more and more, we would make that foray into the world more and more often.  And many times when we're out there, we get stares or awkward glances from people who recognize that my kids aren't behaving as one would expect.  And that's when I have to decide whether I divulge any information.

I could always tell when another Autism Parent was approaching me.  They would usually start the conversation.  Sometimes they would be blunt about it, asking me directly if they were "on the spectrum".  Other times, they would just hint around until I would divulge in the information, and almost every time they would point out their child(ren) and tell me that they understood as their child(ren) was also on the spectrum.  And, as long as I wasn't dealing with a tantrum, we would usually have an open discussion about Autism in general, the types of programs we were familiar with, and other topics that I now find fascinating that I never would have known about if I wasn't an unwilling entrant into the "club".

Making this decision was easy when they were 2 or 3 years old and they really didn't care one way or the other.  But they are getting older now.  They will be 7 in less than a month.  They are both considered to be high functioning......Ballerina is in a general education classroom and Music Man is working his way towards a college-bound high school diploma in his current special education first grade classroom (as opposed to a class mainly focusing on life skills).  They are starting to show signs of the development of a sense of self, and taking pride in that discovery.  Is it fair of me to advertise that they have a stumbling block in front of them, in the form of Autism, that they must learn to cope with?

But now their peers are also starting to notice and ask questions.  I was asked several times while they were in kindergarten why they act so "weird" (in the way that innocent 5-6 year olds ask to learn about the world around them).  When I first heard this, I won't lie.....it made me angry.  But then I realized that they weren't trying to be mean, but to understand why, when everyone else fell into a single mold, my children didn't.  So, I always gave the simple explanation that they both just see things differently.  I always tell them that it's not a bad thing, but everyone is different and we all need to accept each other for who we are.  They always seemed to be satisfied with that answer.

But adults don't have that innocence.  Adults need more concrete answers.  They too see my children are "weird", but most won't just come out and ask as the kindergarteners do.  Many of them stare.  Many of them glare at them and at me when they see what they believe to be immaturity pouring from my children as they throw a fit in the grocery store because we are going down an aisle rather than up the same aisle.  Or why my child prefers to simply sit in the mulch and play with the wood chips when we go to the playground rather than run around or play on the equipment (especially when the park is crowded).

Is it my responsibility to my children to educate these onlookers?  Is it my job to explain to the world why not all children are the same?  Or am I making an excuse to hide my fear that they see me as an unfit parent?  I always tell the people for whom it's important they know.  Teachers, caregivers, doctors.....they all need to know that when they see Ballerina and Music Man, they are seeing a child with challenges that aren't necessarily apparent when they are first looked upon.

I guess this is one of the challenges for me as my children continue to grow.  My role as their mother is beginning to change.  Until now, I have been the one that they counted on for support and guidance for everything that they do.  Now they are starting to need to rely on others, including themselves.  I will still be there to help them in all ways that I can.  But as they continue to grow, they need to learn how to handle situations for when I'm NOT present to fight these battles.  I will not be with them at school to step in when a bully says something about them in a way that they can hear it.

There is a right way and a wrong way to face the world.  I just hope I am giving them the tools they need to successfully be able to face the world every day.


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My name is Ilene and I'm a delinquent blogger.  Yup.....that's what I've become.  I keep meaning to sit at the computer and write and it just hasn't happened much in a VERY long time.

But I still have stories to share.

I (along with my husband) are raising 3 wonderful children and a crazy dog.  My kids are 8, 6 and 6 (the twins are nearly 7).  My older son is typical (with all of the issues that come with raising a typical boy) and the twins are both Autistic.  And I can't say "No" to activities with the PTA (where I hold a couple of positions), so I'm constantly running over to the kids' school.

If you would like to read some out-of-date stories, please feel free to check out my blog (My Family's Experience With Autism).  And perhaps, by the time you get there it won't be so out of date anymore!

Mindfulness

I met recently with a grown woman, that had only been diagnosed with ADHD in recent years. She had so many compensatory skills, that it took a long time to get the proper name for what had always plagued her. She is successfully managing it now due to the right med, and what she referred to as behavioral modification.

"What, specifically, is the modification to your behavior?" I asked, having several people in mind I could hardly wait to suggest it to, whatever it was.

"Mindfulness," she said.

"Wow," I said. "I love that. But how does that look, exactly?"

"I ask myself, 'What am I doing, and why am I doing it?'"

We went on to talk about lots of other things that have stayed with me in the weeks since our meeting, but none more so than the two questions she asks herself. I've watched videos. I've read books. I've listened to interviews. I've taken yoga. I thought I understood what mindfulness was and how to attain it, but having it boiled down to those two simple questions, has proven to be the most helpful. I find myself asking those questions of myself, many times a day, especially when I start to get amped up about something.

"What am I doing?"

"Why am I doing it?"

Usually what I'm doing is something compulsive, and why I'm doing it is to relieve anxiety that has nothing to do with the task at hand (which I can control) and everything to do with something else (which I cannot control). Dishes in the dishwasher = everything will be fine.

There is no judgment with mindfulness. No "shoulds," just simple observation and focus on the present moment, noticing it - gently.

"What am I doing?"

"Why am I doing it?"

Breathe.

Repeat.






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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.

Seasons of Joy, Seasons of Sorrow

We come to one of my favorite times of year.  The snow (yes I love it), the lights, the carols, the tree, decorations, cookies, secret surprises that I have to hide from a very sharp little boy.  It is also almost "gotcha" day for Marvin Fields.  He came to us December 12. Here is a look back at my little butter bean:).

Awww.  When we got Marvin I thought I had won the lottery.  We went to meet him at his foster family's house.  He was pudgy, wobbly, and had the brightest smile.  I was in love from the get go.

His foster family had first choice to adopt him, but they had already adopted two children and wanted him to go to a family that could not have children.  It was supposed to be a slow and gradual process, but a day later we were told that Marvin needed to be placed with us in the next couple of weeks.

So we scrambled to get everything ready.  How we pulled it off I have no clue, but we did.  I had Christmas up and rolling and had visions of mother son bonding under the tree with stories and cookies.

Marvin left for preschool that morning unaware that his world was about to shatter.  His social worker picked him up at noon with all of his belongings in her car.  He cried himself to sleep and when he woke up he was with his new family.  I was beside myself with joy.  Marvin, not so much.

When he woke up and realized that his things were in a new room big tears rolled down his fat cheeks.  His foster father was deaf so all he did was walk around the house signing for his daddy.  He wouldn't come near us.  He cried like his heart was being broken.  And it was.  All that joyful bonding went down the toilet.  Marvin was scared, homesick, and heart sick.  My child had already survived massive amounts of abuse and we basically took away the only family he ever knew and expected him to be joyful about it.

Marvin began the healing process.  My son is a survivor.  But while I love the holidays, Marvin remains shaky about them.  For the outside world he puts on a happy face and tries to participate with all that he can muster.  That after all, is the socially acceptable thing to do.

But there are times when the pain and fear resurface.  Marvin has a harder time going to school.  He was taken away from the only family he knew, whose to stop someone else from taking him?  Sometimes, I can't even leave the room without him melting down.  So I hold my child tight and assure him the best I can.  I take him with me.  He holds my hand with an iron grasp afraid to let go.  Someday he will believe he is safe.  Until that time I just hold him tight.

He looks at our tree and cries.  He doesn't understand why he is so sad.  He tells me,"Mommy, my heart hurts."  He has nightmares, meltdowns, and he gets angry.  As I sit and rock him my heart breaks over and over again.

So how do you teach a little one to find joy?  To feel the magic of the holidays?  Nice and slow.  I coax him to cook with me.  I read him stories of our faith.  I teach him our family traditions.  But most of all I let him know that it is OK to feel sad and angry and scared.  That he is surrounded by love and people who will protect him.  That someday he may want to do more, but for now it's OK just to watch, to take in, to process it all.

Slowly, Marvin has been a bit better every year.  This year he asked to put up the tree, a first. We take it slow and explain things.  Marvin is not good with change, but he is less resistant to it every year.  I may never get the Christmases I dreamed of.  Marvin has a lot he still needs to process and work through.  It may take a lifetime.  But I am learning that it is OK to let go of the fantasy and build Christmas our own way.  To take is slow and rejoice in what I have and not mourn for what can't happen.

The best gift I can give my son can't be bought and put under a tree or in a stocking.  It is the gift of letting him be himself and loving him just the way he is.  That is what makes the holidays, and our lives magical.


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Amy Fields is a wife, mother, and advocate.  You can read about her family in her blog Many Kinds of Familes

Embracing change!

We all have our own little routines and familiar patterns that we feel uncomfortable deviating from. I have this compulsive need to floss my teeth each night before brushing my teeth. Miss a night and I feel a little uneasy and am forever moving my tongue around my mouth, feeling for bits that may be caught between my teeth. (Sorry, too much info!). This is standard stuff and let's face it if I miss a night it is not the end of the world. I may feel a little antsy, however, I can shrug it off and say "oh well, I will floss tomorrow morning!"

Throw autism into the mix and it is another story. For years my son could not and would not tolerate any changes in his life, whether it be change of routine, type of food or even driving down an unfamiliar road. I was extremely fixated on keeping the peace; and keeping everything the same in order to prevent my boy from becoming terribly distressed. I didn't like to see my son unhappy and totally out of control of his emotions and unable to regulate himself. It was depressing and absolutely heartbreaking. It was terrible to live in this state, continuously tiptoeing on eggshells to avoid drama.

As time moved on, I learned that it was possible to move on from this way of life. I discovered that I could help my child to overcome his high anxiety and his need for sameness. And, I went with it because the alternative was to stay at home with my son and only have two safe places, home and school with nothing in between. That is not a life. I didn't want to become reclusive and I certainly didn't want my son to remain fixed in his patterns and unable to move forward. I wanted our family to have a regular life as much as possible.

I started introducing changes to my son's routine. I am not talking heavy duty changes. I am talking about the little variations that would be a *tiny* challenge for him. I am talking about putting a pen on the edge of a table and saying to him. "I am just going to leave it there for 5 seconds, it will be fine". During those five seconds I would be giving him reassuring smiles, knowing all the time that he wanted to clear that table because NOTHING was allowed on the table. Five seconds. That is all.

More little changes like;

Adding a tiny piece of carrot to his Spaghetti Bolognaise sauce. "Oh wow, I see some carrot" (it took a good six months before he would eat the carrot, however, he was comfortable with it being there!)
Driving down the wrong road, "Oops, silly me, I have driven the wrong way... but it will be fine"
Getting him familiar with going to ONE coffee shop. Then introducing another coffee shop.
Cutting his toast in different ways and spotlighting the change.
Wrapping his school snack in paper one day, tin foil the next ~ and spotlighting the difference.
Moving his chair to a different place. Sitting next to him. Sitting opposite him, so on and so forth.

I could go on and on.....

These days I have a flexible child who adapts to change very easily and the word 'transition' doesn't enter our vocabulary. He no longer needs a visual schedule and is perfectly fine if I change my plans at a whim. This afternoon, my husband arrived home to pick me up as we needed to collect my car that had been in the garage for the day. Nick was playing on the computer, however, when I called to him "let's go, we going out!" he shut down the computer and came to join us. When we arrived at the garage, it wasn't possible for him to stay in his Dad's car so he came into the showroom with us and waited patiently while everything was sorted out. He showed NO signs of stress over the fact that he was in a brand new place and everything was unfamiliar (except for his old Mum and Dad!). He did not ask for "car". He did not ask for computer, iPad or anything else that he uses to escape. He was a regular kid, out doing chores with his folks. Absolutely brilliant stuff.

I know that we have a long way to go. Food issues are still a problem, however, he has made some lovely 'healthy' progress of late. He is also uncomfortable when in the company of a lot of people, although he is happy to go visiting with us and will quickly make himself at home wherever we go. The iPad helps tremendously in situations like this.

Gone are the days that we had to stay at home. Gone are the days when we had to make arrangements to leave him at home while we went out and about. These days he comes with us and we are no longer a family divided. Of course we make accommodations for him, we also do the same for his brother. Our life may not be the same as Mr and Mrs Joe Soap with their regular 2.5 children who live down the road, however, this is our life and we are making the most of it.

Little changes have made our boy more flexible and comfortable with trying new experiences. The little changes are paving the way towards bigger challenges. Slowly and surely, step by little step, we will guide him forward. Watch this space!

Now, where did I put that dental floss?

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Di is the very proud Mum of two teenage boys, one of which who just happens to be autistic. You can find her over at The Bright Side of Life.

6 Autism things I don’t do no more

6 years ago when R was first diagnosed, DH and I had endless passion about so many Autism things. I focused so much on a to-do list. If I could have looked ahead I think I would have focused also on a not-to- do list.

Here are 6 things that I used to do a lot and I don't anymore.

First, the Debates of Autism:

I just don’t have the same energy around  Autism controversy like I used to. Case in point- when Susan White of Autism speaks did her dramatic speech (or was it PR release?) and Facebook caught fire –I was about to write a POV. But then.... my Surface keyboard was lying on the chair next to the bed. And.... I was too lazy to get out of bed. So I contended myself with just tapping on “like” on someone whose POV approximated mine. Please don’t be offended if you are passionate about the debates. The debates and the issues are important. Of course they are. But I no longer feel compelled to add my voice.

Second,  forcing you to be optimistic.

I am super optimistic and work hard to be that way. But I realize that that is not everybody’s way. If venting helps you- vent away. If happiness feels irrelevant – so be it.

Third, thinking people with autism have the blueprint on my child:

Autistic adults provide a unique perspective. They make us think of things that we would not have thought of. But I no longer think that an autistic adult knows more about my son than I do. Just because I am Indian, would an Indian stranger know more about me than my black BFF?I don’t think so!

Fourth,no more FOMO:

The other day, I had a chance to listen to Temple Grandin. Those of you who follow my blog know that I am a huge fan. But as I heard her speak – I felt like I had heard the every bit of the speech before. It’s like this with many trainings and books. It was useful in the early years. Not just for learning, but also my need to do something. I had a massive version of FOMO – fear of missing out. I felt that without doing a training etc. we would be missing out something crucial for R. But now mostly we seek less, do more.

Fifth, thinking I have the answers or can find them if I look hard enough:  

We have read so much, talked to so many specialists, met so many parents and autistic people. And guess what? Autism is still a mystery. The one thing I know, is that I don’t know. Now when newly diagnosed parents ask about things like DAN – I just say – “use good sense"

Finally, Autism and Identity:

I think I am going to wait to see how R feels about his Autism without assuming that he will

a.     Be ashamed of it and want to hide it

b.     Think it’s a part of his identity or even be all about autism pride.

My hunch is that he will be matter-of-fact. Since DH and I are very matter-of-fact. I showed him my blog the other day and asked him if he felt okay about me writing about our family and he said he said was totally okay!
The question, whether he is who he is, because of his autism or in spite of it is irrelevant.

There are things I continue to care about and feel passionately towards regarding  autism, even after all these years and I will tell you about those in another post some day.

Floortime Lite Mama writes about Love, Life and Autism at www.floortimelitemama.com

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ACA Deadline-Alternatives to enroll so caregivers can protect their family

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By now most of you have heard that families couldn’t get on the website to enroll in healthcare.  The Marketplace will also help families with costs or if they're eligible for Medicaid.  However, things are getting better and most of the glitches are gone.  In addition, there are other ways besides the website for families to enroll. 

*The deadline to enroll is 12/23/13 (just extended from 12/15) for coverage that will be effective 1/1/14.*

What families can do:

Families can apply by phone, online, in person with the help of an assistor, or mail a paper application.

1.     phone (800) 318-2596 24/7

 

2.     online https://www.healthcare.gov/marketplace/individual/

 

3.     find help in person https://localhelp.healthcare.gov/

 

4.     paper application http://marketplace.cms.gov/getofficialresources/publications-and-articles/marketplace-application-for-family.pdf

Family caregivers can have more peace of mind knowing that their child with special needs, as well as all family members, are all covered by insurance in the New Year.

Resources

The main website where all of this information can be found is https://www.healthcare.gov/

Remain Hopeful,

Lauren

 

Lauren Agoratus is a parent/advocate who serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork