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Autism: Birthday Party or No Birthday Party? March 10, 2010

Posted by hopeauthority in Autism, Children, Family, Parenting, special needs.
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Well, it’s that time of the year again. Time to plan Fabio’s birthday party. He wants an indoor pool party (we still have snow here).

And I won’t even get into how bothered I am by the fact that he’s turning EIGHT. Where did all that time go? And yet, sometimes it feels like he should be 20 because he’s been 2 for about 10 years…

As I was making out the short guest list, I realized that only one of the kids who had autism had had a party of his own and even that kid just had one or two. And its not a financial thing. The moms, all of whom I know well and for at least 3 years, offer these reasons:

1. He doesn’t “get”  the birthday party concept, so why spend the time and money?

2. He doesn’t “get” the presents thing.

3. He doesn’t interact with his peers, so why bother if he won’t even notice anyone’s there.

4. I can’t predict how he’ll behave on that day and if he’s “off”, then it’ll all be a waste.

5. I’m tired of family or friends complaining that he doesn’t come up to them. They don’t get it and I have no patience.

6. He won’t know what he’s missing.

On one hand, I can relate to a lot of what they feel. And yet, even with hesitation, I booked the party today. For this Saturday. (Not too last minute, right?)

Maybe I’m just wishful, but I think Fabio does understand that kids should have a birthday celebration. And I think I’d be sad if the only cake was the one at the dinner table with just the four of us. Is it just that I can’t let the dream of typical die? Maybe. And I’d beat myself up with Italian guilt if I did actually hurt his feelings by not having a party with his peers. But that’s me and it’s what I hope is right for my son.

I’d love to know what others think about having traditional birthday parties for their autistic kids. Do you or don’t you? Do you do it only for your typical kids? And what about the guests: a mix of typical and special needs children or not? What kind of party do you have (ie pool, bowling, etc.)?

Share your thoughts here.

Autism Statistics Now 1:100! October 5, 2009

Posted by hopeauthority in Autism, Children, Family, Health, Parenting, special education, special needs.
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There’s many stereotypes and generalizations about autistic kids. Like they don’t handle change well…they like routine…they hate transitions. Well, maybe the apple doesn’t fall far from the tree in this house.

I was on a roll with this blog when my aunt passed away in May. For three and a half months, I found it hard to carve out the time for blogging. It’s not about just posting comments, but also about reading those of others. It’s about sharing and connecting.

My aunt died. My routine was broken. I was unhappy about both. Then a new routine of not blogging set in without me really realizing it. And then that became a hard routine to break.

And so much has happened that was newsworthy in the public eye… as well as in our private life… that caused me to at least think “I gotta get back to my blog!” Yet I didn’t.

I let horror stories go. I didn’t pay proper respects at the loss of Ethel Kennedy Shriver, or of local autism heroes. I’ve been lax in reporting Fabio’s HBOT progress or any of his milestones and challenges. There’s a 100 posts in my head that never made it to the screen.

But today, in Newsday, my local newspaper, an article by Carla K. Johnson, entitled, New study  reveals worrisome autism numbers, jogged me out of my fog and sent me running to the computer:

Two new government studies indicate about 1 in 100 children have autism disorders–higher than a previous U.S. estimate of 1 in 150.

Suddenly, I am moved to write again. But I am speechless. 

Perhaps a moment of silence would be best…

Stroke: Autism’s “Cousin” May 18, 2009

Posted by hopeauthority in Autism, Children, Family, grandparenting, Health.
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It’s been awhile. My aunt’s stroke has taken me away from the blog partly because of the physical things I need to do for her and partly due to the mental distraction of her situation.

She survived with mental faculties largely intact. Short- and long- term memory are great. Speech is pretty good. No facial drooping. But the right side of her body is essentially paralyzed. Can’t move the arm or leg. She came out of the ICU, off the ventilator. Now stable.

And cursing. A blue streak. (This from a proper woman who never, ever cursed in her life!) She was being starved by a$$holes for God’s sake! And mistreated by these bast@rds! Why, she was going to call her lawyer to start a suit against the whole lot of them morons!

Well, that was the status when I spoke to her last Thursday. So, I had to make the trip to Pennsylvania on Friday to straighten things out.

So, I arrive in under 4 hours, loaded down with dozens of fresh New York bagels and containers of cream cheese for each of the departments who have helped my aunt. Nothing shows your appreciation better than NY bagels!

Needless to say, the so-called bast@rds couldn’t be more accommodating to me…or my aunt. The Director of Nutrition Services came up to go over her dietary wishes in painstaking detail assuring me that nothing undesirable would ever cross her plate again… and that she’d eat plenty.  Her doctor came right in to update me.

Even the priest from her parish had gotten my message and showed up to bless her, which brought her much needed peace.

Then just as I was about to end my 7 hour visit and begin the long drive home, they discharged her from the hospital and moved her to its 9th floor Acute rehab center. Argh! So, I started all over with the new staff…who is wonderful. And a few more hours later, I left her in their competent hands to begin her 3 hours per day, intensive therapy regimen.

As I visited with her, I couldn’t help but think about the parallels between autism and stroke. And it brought me sadness and frustration.

Like my son, she sometimes needed to “search” for the words she wanted to say. You could see from her face that they were in there somewhere and she was frustrated to have to make an effort to retrieve what was always so readily available. She will need speech therapy, like Fabio.

Fabio could certainly benefit from some occupational therapy (OT) for his pitiful little handwriting, but he doesn’t qualify for OT services since his other fine motor skills are stong and bring up his overall score on the eval exam. But how can I complain about his scrawl as I watch my aunt trying to massage the life back into her right hand with her left one? She will need OT to relearn every skill she ever had like writing, washing, dressing, feeding.

Fortunately, Fabio is a wiz when it comes to all things physical. I am ever grateful for this gift as I am aware that many autistic children need quite a bit of physical therapy (PT). For my aunt, intensive PT is the most important therapy of all. She must try to regain the use of her right side if she ever wants to live independently again. She needs to be able to move. Herself. By herself. Safely.

It’s independence or institution.

So, I sat there for hours…at times blankly smiling at my aunt while my mind secretly contemplated all these cosmic similarities between her situation and Fabio’s…and I felt sadness and frustration. And I felt tired from the battle he’s been fighting and from the one she must now take on.

But I spoke to her only of hope… though there is little for a complete recovery.  A complete “recovery”.

And then I thought of my boy. And the similarities.

And I am sad. And frustrated. And tired.

Update June 16,2009:

My aunt passed away on May 23, 2009, which is why I haven’t been posting for some time. Thanks for your support and prayers.

Prayers and Good Thoughts Requested May 9, 2009

Posted by hopeauthority in Autism, Family, grandparenting, Health, religion.
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On April 25th, I wrote a post about my Aunt Angie’s visit. Please read it now, if you haven’t already.

I was a little exasperated by the way she played with Fabio constantly, but in a way that was too “in his face” and therefore frustrating to him at times. She kept trying to connect with him.  I was frustrated at how hard it is to teach someone how to play with an autistic child…and at the fact that playing even has to be taught.

What Fabio really responded to was the way my Aunt Angie just loved him. It was when she would back off that he’d seek her out for hugs or kisses. And I’ll never forget the memory of Fabio climbing into her bed in the morning and her responding by simply … instinctively… covering him up with the blanket and drawing him into her side for a snuggle.

Ten days after she went back home to Pennsylvania, she suffered a massive stroke.

For those who are so inclined, please pray for my aunt’s recovery.

The world can not afford to lose someone like her. Fabio can’t either.

Autism and Overnight Guests April 25, 2009

Posted by hopeauthority in Autism, Children, Family, grandparenting, humor, Parenting.
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Somebody save me. And Fabio.

I got the bright idea…born after too many consecutive sleep-deprived nights… to invite my 75 year-old aunt to come to visit and see my daughter’s stage debut.

Did I mention she never had kids? Or that she divorced about 30 years ago and still lives in the same house with her ex because they are both too ornry and stubborn to settle the distribution of their property. They sneer at each other as they pass in the hallway as each waits for the other to die first. Or that she never stops telling the same stories from her childhood …complete with the venomous grudge tone… about how my mom was the favorite and got everything, while she was, like, the slave version of Cinderella and had to cook, clean, and care for the youngest sister. Woe is her. Forever.

But, she was always good to me. And she loves my kids. So, I get these crazy, regrettable ideas from time to time. And I spent 8 hours on the road to get her back here on Friday.

And I’ve been kicking myself since because…

She won’t freakin get out of Fabio’s face. She’s like everything you’d want in a grandma…if you had a typical kid. But when you have an autistic kid, she’s like, oh, um, the anti-Christ of grandmas. I am waiting for Fabio to deck her.

Within minutes of arriving, she started forcing herself on him, trying to play with him. Not exactly his strongest trait. He plays with his toys. You watch. If you’re very lucky, you will be able to ease your way into playing with him, but must take his direction. He’ll let you know which toy you can have…and which one you can’t. He will give you a turn…after every 3 of his. Again, if you’re lucky and subtly work your way into his space.

So, he’s kinda like the Toy version of the Soup Nazi from Seinfeld. Yes, it’s Fabio, the Toy Nazi. If you don’t follow his rules… rules that seem ridiculous to typical people… “NO TOYS FOR YOU!”

And don’t even get me started on her attempt to move the assembly of 425 little toys (which we refer to as Fabio’s “concert” or “show”) off the dining room table. That show’s been in town for 2 months. He really doesn’t have much interest in it…unless someone touches it!

There’s really something wrong with this world when a little boy with autism can’t enjoy his grandma-type great aunt because she just can’t understand how to connect with him (despite parental guidance).  I feel guilty being frustrated with her…because at least she tries. There’s so many younger family and friends who don’t. 

Before Fabio went to bed last night, my aunt told him she was staying overnight and he should come see her in the morning. So he leapt out of bed at the crack of dawn and ran down to her room and crawled into bed with her. Steps behind him, I got a peek of her throwing the blanket over him and welcoming him in for a silent snuggle.  And I backed quietly away…

Some situations need guidance. Some, happily, don’t.

I guess she can stay awhile longer…

It’s Autism Awareness Month…Yip-pee! April 1, 2009

Posted by hopeauthority in Autism, Children, Health, Parenting, special needs.
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Well, its April again.

Already.

I don’t like April.

There’s April showers. April Fools Day (for people who actually have time for pranks and laughter). Allergies. Taxes. A big freakin school vacation to disrupt routines and invite regression and highlight social isolation. Oh, and there’s Autism Awareness Month, of course.

So the whole world will suddenly step up its efforts to be “aware” of autism … for thirty whole days. There will be lots of news articles and Jenny McCarthy sightings, talk shows, and some fundraisers… for thirty whole days.

Good-bye rollover minutes!  I will get copies of every article, plus tons of phone calls reminding me to watch every autism story from everyone who has ever so much as heard of my son having autism… from my Great Aunt Lizzie’s gardener’s nephew to my cousin John the hairdresser’s clients… for thirty days.

I swear, long before the May flowers sprout, I’ll have had my fill of the many “helpful” souls who just show up in April and pass along some autism “news” simply to make themselves feel better. I especially love the ones who tell me about how a special diet may help… Fabio’s only been religiously following one of the most restrictive diets ever made for the past four freakin years. Anyone who has spent more than three hours with my family would know that.  

In fact, there’s only one thing that feels longer than those thirty days in April …it’s the remaining 11 months of the year when the “awareness” fades away and nobody calls… or visits… or helps… or cares.

We don’t need Autism Awareness Month. Or Autism Awareness Day.

We need Autism Awareness Daily. Right Now.

American Idol and Autism March 5, 2009

Posted by hopeauthority in Autism, Children, Family, Parenting.
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Dun-na. Dun-na. Dun-na. Dun-na. “THIS (long pause) is American Idol…”

All it takes is a few notes of the intro song to send Fabio running, hair in the wind, for the big screen in the den. He starts asking for American Idol about an hour before it’s due to start. It is a great blackmail tool reinforcer to use to get him to do any outstanding homework or finish eating (yes, we eat kinda late)!

Idol has been a tradition in our house since Season 4. We never miss it, even if we have to DVR it on occasion. And we all participate in a “pool”, so we each have to decide who to vote off each week. I always take my daughter to the concert when they tour in the summer.

One of those funny moments you’ll always remember happened a couple seasons ago when the four of us were watching Idol. It had just ended and hubby, daughter, and I immediately started speculating and debating about who we thought should be voted off, with us not able to agree. Fabio was just sitting there with us, being his regular cute, essentially non-verbal, four-year-old self. It was down to maybe the last 4 people at that point. 

Once we stopped debating and there was a lull in the discussion, Fabio simply, and clearly, stated: “Lakisha”. Freakin Lakisha. We all burst out laughing. Great times…

So now, when the Idol music begins, Fabio has started doing something that is both adorable and excrutiating at the same time…he runs to his drum set and starts to “play”. And Mr. Music also occasionally “accompanies” some of the more rock-style performances with his unique drumming talent. Or he’ll try to sing along a bit. Or he’ll dance.

So watch for Fabio to be in American Idol, Season 18. He’s got 10 years to perfect his gig. Oh, and he’ll be no wild card.

Nope, America will vote him in, for sure.

Happy National Pie Day January 23, 2009

Posted by hopeauthority in Autism, Parenting, special needs.
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No, I don’t have too much free time on my hands.

I have celebrated National Pie Day for many years and I encourage all of you to partake in some pie today too. Do it for me.

I’ve noticed that my kids, both the typical and the autistic, the girl and the boy, like to help me when I bake. And since I have been a competitive baker for over 20 years..and consider pies to be one of my strongest areas…I love that they want to help me.

On National Pie Day, I bake pies to eat and to give away. Today, I will be teaching my Junior Girl Scout troop to bake pies at our meeting…and they are all very excited since none of them (except my daughter) bake at home. Pie-making is becoming a lost art…and it’s time we change that!

We eat pie for breakfast, lunch, dinner, and dessert on Pie Day. There’s pies, tarts, quiches. Dessert pies. Pot pies. Shepherd’s pies. For the lamest and laziest, there’s even pizza pies.

My challenge for you all today: If you are able to, bake a pie with your special needs and typical children. If it just won’t work out for today, plan to do so at a better time soon. Then buy a pie and eat it today. Or buy one and give it away if you’re dieting.

Trust me on this one. It’s a sweet deal any way you slice it.

Is it 2010 Yet? January 2, 2009

Posted by hopeauthority in Autism, Family, Parenting, special needs, Uncategorized.
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Ahhh… 2009.

A whole new year to endure enjoy.

Did I say that out loud? Oops.

Bet that didn’t sound like the typical perky New Year’s Day stuff you’re used to hearing. The upbeat talk of resolutions from the self-absorbed who swear (again!) that this will finally be the year they stop smoking, or get a better job, or lose the ever-increasing extra weight they’ve amassed because they can’t push themselves away from the table.

Well, I’m not perky. Or particularly upbeat. And I am certainly not typical. And neither is my son, for that matter. And while I’ve been guilty of making the same kinds of resolutions in the past ( and have asked a fellow blogger to let me know if she finds my inner size 6 while she’s searching for her own), I don’t really have the time to be self-absorbed. (Or the money to drop on the annual gym membership that I actually use just once!) And I am tired of the guilt from failed and unreasonable resolutions.

So while I was pondering what deep, profound resolutions I would make for this year, I  decided that the best thing to do is just reolve to do my best each day. Some days, that will be really good. Other days, it will have to be good enough.

This year started out pretty rough for my family. It was as if all that “Christmas Miracle” business I was basking in over the past couple weeks came crashing down along with the Times Square Ball on New Year’s Eve.  Poof…it was gone.

We had a  tough outing at the inlaws’ house yesterday. It was a new condo that they just moved into a few days ago. And it is so small when you try to cram the whole family of 19 into it. Add to that a cousin of 4 and his desirable toys which were ever, so ever, so perfect for lining up…and you get a recipe for disaster. Each time he removed one from the line, it set ‘C’ off in a tantrum of epic proportions that lasted just long enough for the boy to tire of that toy and come back to remove yet another. Sigh…  

And there was no escaping. We were celebrating my daughter’s birthday with the family that night so we had to stay through cake for her sake…and try to pretend that things were under control, when it was obvious that they weren’t. Its been over a year since we’ve had such a bad scene with the family.

I refer to moments like this as putting me in a “black funk”. It usually lasts for days. It’s a particularly low level of sadness that can’t be shaken or consoled…it just runs its course in its own time. 

My mood is always linked to how my son’s life is going. If he is doing well, I can be almost giddy with joy…even if my house is burning down.  Yet, if he is having a rough time, then I am blue…and nothing…not even winning the lottery…will cheer me up. 

I know it’s just another day, but it is particularly hard to go into a new year with such a bad start. It feels like one of those bad karma things.

I sure hope I’m wrong. Time will tell.

Right now, I’m ready for 2010. I want a do-over of New Year’s Eve… And while I’m asking, I’d like to request that the camera guy refrain from airing the offensive, extended, and awkward lip-lock of Mr. and Mrs. Dick Clark. Ewwwww. In the name of decency, just a peck, please.

Ten Things I’m Thankful for about Autism November 27, 2008

Posted by hopeauthority in Autism, Family, Parenting, special needs.
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Well, it is Thanksgiving. So instead of my usual “the glass is not only half empty, but it’s chipped” take on life, I decided to reflect on what I have to be thankful for with respect to autism.

1.  I am thankful for my son, who I love beyond measure and comprehension. He has autism and I love him in spite of it and because of it. It is part of him and makes him who he is. Part-time angel boy. Part-time devil spawn.  And at all times, the cutest boy in the world.  If I didn’t have to deal with the challenges of his autism, life would be so easy. But I know I would be like all the other moms of typical children and…on some level that I wouldn’t even realize…I would take my typical life and my typical children for granted. Because of autism, I take nothing for granted. 

2.  I am thankful for my daughter, who I love beyond measure and comprehension. She does not have autism. She was born with a larger heart than God typically gives, so it could hold all the love she has for her little brother. She was born to teach him and protect him. He has changed her world in both good and not so good ways and she embraces and accepts it all with grace beyond her years.  She has changed his world. And she will change our world. She is beautiful to the core and is all the best of what a child should be.

3. I am thankful for my husband, who is my life’s true soul mate. He is without question the most wonderful man in the world. Like me, his children are everything to him. His needs come last. He is his daughter’s hero and, though he doesn’t see it, he is raising her to know all the qualities she should look for in a partner. His son feels safe in his arms.  Nothing is as beautiful as watching him sharing experiences with his son…whether on a playing field or just giving him a bath.  Yet, nothing is as heart-breaking as knowing his dreams for an easy, typical father-son relationship can not be. He is loyal, honest, kind, and loving. Before autism, he was even funny. There are many times when the stresses in life cause us to walk that fine line, but there is no stronger love than that which can still survive an autism diagnosis. Had we not been challenged by autism, I would not have known the true depth of my love for him.

4.  I am thankful for my in-laws, who at 81 years old, still remain a constant source of love and support and strength to our family. They are our only babysitters.  They support our son’s special diet.  They were willing to adjust their grandparenting style… after 30 years… to accommodate autism’s quirks. They changed… but did not lower … their expectations for my son.  They love unconditionally and completely, and honestly, they don’t even notice the autism.  They are the only grandparents my children will ever know, so God made them extra special with lots of love to share. If we didn’t have autism in our life, I would not have witnessed how deeply a parent can love an adult child and his spouse.

5.  I am thankful for the very, very few good friends we now know we have. The ones who almost “get it”. The ones who try as hard as they can to “get it”.  The ones who stuck around through the toughest times, especially the early years. Those who my kids know as “aunts” and “uncles” because they are a real part of our lives…unlike the family members and fair-weather friends who initially backed away and over time have effectively deserted us.  I used to think we had a lot of friends, and a big, close family.  Thanks to autism, I have learned what a true friend really is.

6.  I am thankful for the doctors who have devoted themselves to helping our children.  All of the DAN doctors, holistic and traditional. And all of the researchers committed to finding the cause and cure of this epidemic gripping our children. I am thankful for all the efforts of all the people who raise awareness of autism, even those whose platforms I may disagree with, because they are doing something. If we relied only on what efforts we exhausted parents could make, we would not be as far as we are today. If it were not for autism in my life, I would merely have a pediatrician, instead of the wellness professional who is helping our whole family heal and live well. And I’d know no more about autism than what I learned from Rainman.

7. I am thankful for the special education teachers and therapists whose tireless hard work has brought my son …slowly, but surely…back to this world. And I am thankful for their  parents who raised them to be the compassionate and generous people they are. The kind of people who studied at least 4 years and incurred student loans and got a degree so they can get the shit beaten out of them each day by a child who can’t help himself…and earn pennies for it.  If it were not for their patience and guidance… and their amazing ability to come back for more abuse day after day… my son would not be where he is today.  If it were not for autism, I would not know that angels like this walk the planet.

8.  I am thankful for the parents I had, who have been gone for almost 15 years and never got to be grandparents.  Nobody’s perfect, but to me, they were..because they were all mine. They gave me the skills I’ve turned out to need to handle the challenges in my life. And while I would give anything for them to have been able to see my children enter the world, a part of me is thankful that they didn’t have to see what a struggle their child’s life has turned out to be.  Thanks to autism, I now know that when a child suffers, their parent hurts 10 times worse.

9.  I am thankful for the thoughtful and compassionate strangers in the world.  The ones who don’t stop and stare. The ones who don’t make mean and hurtful comments. The people who are raising children to be caring and sensitive and accepting of the differences and limitations of others.  The ones who are populating the planet with kindness, so the world I will someday leave my children in may be not only tolerant, but brighter than the one we live in today. If it weren’t for autism, I would not even notice their supportive smiles.

10.  Finally, I am thankful for autism making me a better mother than I would likely have been.  For testing me and allowing me to prove myself worthy of the challenge…more often than not. For making those toddler years last longer than they normally would have otherwise.  And for teaching me not to expect great things, but to appreciate the greatness of small things.  

That’s what I am thankful for.

God Bless all of the wonderful special needs kids and their parents. Have a happy holiday, everyone.