Guest Post - What Parents of Special Needs Kids Should Know When Planning for Retirement

Kellie Englehardt is a Salt Lake City based blogger on behalf of New Millennium Insurance Services. Kellie graduated from the University of Utah in Mass Communications. In her free time she enjoys traveling, skiing, doing art projects and exploring Utah.

Money is sometimes a difficult subject to discuss, especially when planning for retirement. Many Americans are busy trying to figure out how much they will need for themselves, so planning to care for a child with special needs sometimes falls by the wayside. In fact, recent estimates show that about 58 percent of Americans die without a will, leaving their loved ones financially vulnerable.

So carefully planning for retirement is critical, especially when supporting a person with a disability or special needs. Technology has advanced and people are living longer, including those with special needs.

The Meaning of "Princess"

Lexi in one of her
"princess" dresses.

For some reason Lexi and princesses has been a soft spot for me since before she even had an official diagnosis.  Here is a blog post I wrote on March 25th, 2010 - 2 months before Lexi was first diagnosed with autism.

"...Another couple in the room had a son 2 months older then Lexi.  They were talking about how he is obsessed with motorcycles and points to them and counts them every time he sees them.  They talked about how he wanted a new bike that looked like a motorcycle and about how he seems to want a new bike every year.


I held it together until we got home ... and then I just broke down!  Lexi is suppose to be talking about being a princess right now.  She is suppose to be wanting new things and pretending.  She is suppose to be dressing up in little high heels and wearing a crown on her head and feeling so pretty and princess like.  She is suppose to want a bike.  She is suppose to be talking to me and we are suppose to be laughing together.  She is suppose to be saying silly things that make my day that I post on facebook.  She is suppose to beg us for fruit snacks and candy.  I wish she did these things and enjoyed these things.  I wish so badly that I could ask her 'what do you want to be when you grow up' and she could answer me and say 'I want to be a princess.'"

iPad to the rescue

Sorry I've been MIA for awhile.  Both my girls have been sick over the last two weeks.  They've had: ear infections, thrush, yeast infection, a cold, and the hand foot and mouth virus - all in 2 weeks.  Yeah.... wild ride.

When Lexi started coming down the hand, foot, and mouth virus on Sunday I was terrified.  I knew that meant she would be home all week feeling sick.  This is usually a NIGHTMARE for us and her.  She is bored, feels crappy, is irritable, and overall is grumpy.  Not that I blame her that is how I am when I am sick.  But, for Lexi, being in that condition leads to endless meltdowns all week.

Guest Post - The roller coaster that is Autism

Alicia Jenkins is a stay at home mother of 5 amazing children who keep her incredibly busy! Her oldest son has high functioning autism and she loves to communicate with other families who truly understand! Her family love all things natural, home raised - as much as possible, and without all major allergens! Alicia: "Phew! Life is an adventure!"  She blogs about her families adventures at The Adventures of John and Alicia Jenkins Family.

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A note from Christine - How stinking adorable are
her kids shirts?  Thing 1-5 from Dr. Suess. Genius!

Let me be straight forward. This is not meant to be pretty. Just thoughts, frustrations, aspirations, goals. It's hopefully insight. And maybe a bit of an outlet for the moment. The autism that we deal with day to day is not full blown, low functioning autism. But a much higher, no one even knows it's there until you get to know him kind. Asperger syndrome.

It's the different little things he does. Completely covering himself in blankets and lying there for hours if we let him. Obsessions over quirky things: one dinosaur. A train. A pirate, or how something is arranged. It's monitoring his temper as he tries to play with other kids, or reciting over and over how to talk to someone. The random rules to a game that only he knows, but you better follow them.

What makes motherhood worth it?

This is my attempt at describing what makes motherhood worth it.  But the best post I have EVER read about motherhood is Perspective on Motherhood: The Invisible Woman.  So please read and enjoy my post, but make sure to go read The Invisible Woman.  Think of it as my mothers day gift to you.  Happy mothers day!

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It’s about time mothers are celebrated this year!  Being a mother is HARD work!  It’s almost surprising we are only celebrated once a year.

I mean think about it.  To have children we give up our bodies, our time, our sleep, our sanity, and our life.  I could add about a million additional things to this list, but you get the point.

Sometimes on really hard day I wonder, was this really worth it?  I could be in the Bahamas with the money I’d save, and be wearing a fantastic bikini with my pre-baby body.  I’d get to sleep in every weekend, and I’d actually be much more actively pursuing my career.  I’d clean my house and it would stay clean, and I wouldn’t step on toys constantly.  I could go to coffee with my girlfriends whenever I wanted, and actually write this blog post without being tugged on and asked to do a million little things that my kids only want me to do because I’m occupied doing something.  Really – there are so many advantages to not having children.

Finding Autism Island - 2 Year Anniversary

Today is the 2 year anniversary from when Lexi was first diagnosed with autism on May 11th, 2010.  In commemoration here is the post I wrote about her initial diagnosis.  I orginally posted it on February 27th, 2012.  It was featured on Autism Speaks blog on March 1st, 2012.

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Imagine drifting in a boat, lost at sea.  You have absolutely no idea where you are and the sea is not kind.  There are constant storms and waves.  All the time there is fear.  Where am I?  How did I get here?  How can I find land?  Frequently you think of crazy desperate ideas that might "save you."  But each time you are disappointed as you find you are paddling in circles.  You are powerless.  All you can do is sit in your boat feeling hopeless, frustrated, alone, confused, and like a failure.

Insurance companies donate to autism? Ha!

Those of you who know me personally know I am the Vice President of Grassroots Advocacy of the Utah Autism Coalition.  We are working at getting autism insurance legislation passed in Utah.  I spend hours every week on this.  Last session a mediocre bill passed.  During “negotiations” insurance companies said that out of the goodness of their hearts they would donate to a treatment fund to cover children with autism.  Surprise, surprise, this has not happened.  There is no incentive in it for them now. They already convinced legislators to let them screw over autism families another year.

Today there was an article published about it in the Salt Lake Tribune.  You can read it here.

In honor of this fiasco I want to share a fantastic little meme a friend of mine made.  Makes my day!!!

Explosion at the park

Picture taken on a different day to the park.

Yesterday was a beautiful sunny day, the kind of day that calls you outside.  So once Nate got home we decided to put the girls in the bike trailer and go for a short bike ride to the park.  So we packed them both in and set off the 3 ½ blocks or so to the park.  We could have just walked there but Nate and I were both itching to get back on our bikes.

We biked to the park with the girls happily enjoying the ride.  Once we reached the park we opened the bike cover to let them out.  Immediately problems started.  Lexi poked me in the eye as she pushed my head away and said “bye-bye, bye-bye.”  She’s done this before.  It basically means she does not want to be wherever we are.  Then she started pulling on her helmet saying “bye-bye.”  So we took her helmet off, only to have her kick and scream and ask for it back.  So we tried to put it back on and she kicked and screamed about that.  Of course there were tons of people all around looking at what was going on since we had a 4 year old child screaming at the top of her lungs about who knows what.  After a minute or two of this we decided it was a lost cause and it was time to head home.

When the world pushes her to conform...

I heard this song this morning and it resonated deep within me.  I've heard it before but I've never thought of Lexi as I've listened to it.  But today as I listened to the lyrics I realized it says everything I hope Lexi thinks and says when the world pushes her to conform into the mold of "normal."  I hope I'm able to instill this kind of confidence and self-esteem in her.

Being an autism parent can be such a interesting balance of pushing therapies to help our children be the best they can be, but also loving them for exactly who they are.  I just want Lexi to be able to do everything she wants to do.  I know she wants to talk, and therapy will help her get there.  However, I never want Lexi to feel who she is deep down isn't ok.  Because it is perfect... it is lovely!

Insomnia Saga

I read an excerpt on My Autism Team from the new book Carly’s Voice about sleepless nights and it reminded me so much of our sleeping saga.  I sat thinking through our night time saga and decided it was worth writing down. 

Lexi started out as such a good sleeper.  She was sleeping through the night at 2 months old.  We had been avid attachment parents back then (had been being the key phrase) so we were all about co-sleeping.  At about 5 months old Lexi slept horribly until we put her in her own bed.  Then a few months later she slept terribly until we put her in her own room.  I think that was our first unnoticed sign that something was different with Lexi; as most babies start getting anxious when their parents are away, Lexi was anxious when we were nearby.  But of course we didn’t notice this.

Once Lexi was in her own room she was a dream sleeper until she turned about 2 and a half.  Then the sleeping problems began.  They weren’t terrible at first, but it was a frequent thing that Lexi would wake up and want to play in the middle of the night and would have a complete meltdown if we wouldn’t play.  But this only happened a few times a week and usually we could get her to go back to sleep pretty quickly. 

Some days are hard - really hard

I didn't write this for pity or for attention.  I wrote this because when I am having a really hard day, I want to read something that captures my emotions.  Hopefully this post captures the emotions you need it to when you are having a really hard day.  We all have really hard days.

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Some days are hard - really hard.  The kind of hard that somewhere in the middle every crazy desperate attempt to change everything you are and know actually sounds like a good idea.  The kind of hard that grinds you up into a million little pieces and spits you out on the other side.  The kind of hard that shatters your soul and changes your being. 

As you sit in a pile of confusion, depression, sadness, anger, resentment, and vulnerability, you wonder how you will ever pick yourself up.  You wonder why you fight so hard.  You wonder why this is all worth it.  You wonder why the clouds are gray and the night black.  You lay in a pile of shattered pieces wondering… just wondering… why…