Month: March 2018

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Autism and a Happy Easter to All!

Autism and Happy Easter to All

Hold on to your hats – tonight is the full moon and the Easter Bunny is coming!  And I can tell it in my house.  Rob is singing his storm/I’m stressed song and Casey is wound for sound.   She can’t stop talking about the plans for tomorrow – Easter Bunny is coming?  Baskets?  Hide the eggs?  Grandma’s for lunch?  Grandma’s for supper?   Yes. Yes. Yes. Yes. Yes.  It’s the same every year, Casey.

We did have to change on of our traditions this year.  I was a little concerned about it.  We have always colored eggs on Good Friday, as the kids were off school and work and I was always off work.  It worked out great – gave us something special to do on a special day.  This year, their workshop was open yesterday.  Casey was stressed all month about when we would color eggs.

I told her we could do it when they got home from work, before they went to visit their dad or we could do it Saturday afternoon.  After much thinking and discussing (changing schedules are never easy, you know!) she decided that Saturday afternoon would be the best choice.  Rob didn’t care, which is funny, because of the two of them, he’s the one who really enjoys coloring the eggs.  Casey wants to because we always have.  (I wonder sometimes if this will go the way of carving pumpkins at some point – she just wont care.  I hope not.  I like our traditions!)

As soon as she stepping in the door today, she was grinning and asking about coloring eggs.  I had them ready – all I needed to do was get the dye mixed up.  (For anyone who hasn’t done theirs yet, apple cider vinegar doesn’t work as well!)   She dropped her eggs in the cups and took them out quickly and was done.  Rob carefully wrote his name on all of his eggs and slowly dropped them into the colors.

Of course, he had to name each color a Power Ranger – Blue was Billy, Pink was Kimberly, Green was Adam, Yellow was Trini….  and orange was a pumpkin.  He does this whenever he sees colors together (You should have heard him in the dollar store a few weeks ago when he saw the party supply aisle was full of every color of power ranger – and he wanted to buy a pack of napkins for every ranger.  Everyone in  the store heard him say the Rangers’ names, I’m sure.)

Rob studied the eggs in the cups of dye and slowly swirled his eggs around until they had reached the perfect color.  I wish so badly that I could see what he sees when he studies colors like that.  To me, they looked pretty much the same in the cups, but when they dried I could see slight patterns.  I know he sees those patterns in everything.  I wish I could – maybe I would be able to draw like he does!  His vision is so hypersensitive that he sees patterns in everything.  This is also why he doesn’t like to stare into someone eyes.  Did you ever notice that your eyes are always moving?  Stare into someone’s eyes sometime – maybe you will catch the slight movements that drive Rob crazy.

Casey smells the dye and the eggs.  When I asked what the eggs smelled like (I meant does anything else smell like them) she said “Eggs.”  Duh, mom – what’s wrong with you?  I knew as soon as I said it that I didn’t ask what I meant, but she answered my question with a look that clearly showed what she thought of dumb questions.  (So you know – the dye smells like colored eggs. I don’t think she knew what to call the vinegar.)

Now, she is resting and he is trying to.  The wind is picking up again.  Rob is laying under 10-11 blankets and a sleeping bag to try to relax.  He isn’t yelling right now, so the weight must be helping.  I hope the wind dies down before he wants to do to sleep tonight.  It used to be that Casey would be up all night waiting for the Easter Bunny, but not so much anymore.  She has finally seemed to realize that her basket will be waiting for her.

I love that I still get to make Easter baskets for the kids.  I love that, thanks to autism, I can keep the magic of holidays alive in our house.  I really don’t think Rob believes in Santa or the Easter Bunny like Casey does.  She believes because they obviously visit our house and leave gifts and baskets.  Rob believes because he doesn’t want to disappoint Casey.  He knows she believes and he won’t say anything that might ruin that for her.

Empathy – something people with autism are not supposed to feel.  They are supposed to be so self-centered that they can’t understand other people’s feelings.  Whoever wrote that didn’t study people with autism long enough.  Sure, it may be hard for some, but it’s hard for some “typical” people, too, to think about others’ feelings.

I hope that whatever traditions you may have you all have a very Happy Easter, surrounded by people you love and lots of laughter!  And maybe a chocolate bunny or two, just for you.  Go ahead – hide your favorite candy.  You never know when you might need a pick me up!

Happy Autism Awareness Month, too!

 

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World Autism Awareness Day is April 2nd!

Facebook and Pinterest have been full of posts about World Autism Awareness Day on April 2nd.  April is Autism Awareness Month.  Can you believe I’ve seen people arguing about what to do on the 2nd?

Many people want to “Light it up Blue” for autism on that day.  Others say they will “Color the World.”  And they are arguing about labeling people with one or the other.  This makes absolutely no sense to me.  Who cares which way you feel as long as you are spreading the awareness our families need?

What do you plan to do to help spread awareness?  My flag is ready to go on the porch (Actually, I put it out year round!) and I have tons of 12 x 18″ blue flags that I put out in the yard.  I painted a quilt block board that is puzzle pieces that I will be sitting on the porch soon.  We all have autism t-shirts to wear, but we wear them all year, too.  Puzzle piece ribbons are ready to be pinned on.

But, really, the best thing you can do to spread awareness is to share your children!  Take them out to eat or to the zoo.  Take them shopping.  Take them to the library.  Sure – you may get some odd looks, but you may also open the eyes of people who refuse to see.  And those same people may be the ones who help another autism family.  It’s just like when you throw a rock into the water – the tiniest ripples will grow and grow.  That’s what we need to do!

Start those little ripples and watch them grow!   Light it up Blue or Color your World and spread autism awareness everywhere!

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30 Years of Autism and Counting – It Does Get Easier!

30 Years of Autism and Counting

My sweet Casey turned 30 last week.  I can’t believe it – but I really can’t believe that we’ve been living with autism for so long and haven’t gone completely insane.

Had anyone known more about autism way back then, she would have been diagnosed at a much younger age.  It’s sad, really.  I can watch the video from her first birthday party and see her completely ignore everyone.  I can hear guests saying how happy she is in her own little world and that she didn’t need any of us.  We might have realized she had autism if more information had been available.

Casey didn’t talk very much.  She could say her ABC’s at 14 months and counted beyond 30 soon after.   She could tell you what shapes were (even obscure ones that I didn’t teach her) and she could do puzzles upside down (meaning the picture was face down – she could still easily fit pieces into the frame.)  She loved colors and named every color in the box. She sang whole songs after hearing them once or twice.  But she couldn’t say she wanted a drink.

To be honest, I wasn’t too worried.  She was my first and the only grandchild on either side of the family, so she spent all of her time with adults.  She never had a chance to mimic other kids – and I didn’t have the chance to see that she wasn’t gaining skills like she should.  She was 3 when it was recommended that we get her tested and start speech therapy.  The doctor’s only concern was her speech, as she wasn’t showing any other signs of autism.  (she was, but I didn’t realize it so I never mentioned it to her doctor).

We took her to a children’s hospital about an hour from our home for testing when she was 3, but for some reason, we never got results from them.  By then, she had started a preschool that clearly was not a match for her and we enrolled her into the preschool our school district offered.  It had special needs and typical kids.  She still had a difficult time, but she had amazing teachers who knew a little about autism and they tried everything they could think of to help her.

She was 4 when she was officially diagnosed.  I read scary books and learned what little there was to learn at the time.  I think that is one of the biggest differences in then and now.  Today – there is information everywhere about autism!  Doctors know what it is and they know the signs to watch for.  There are therapists who are trained to help children with autism.  Schools prepare teachers (sometimes, they have to be told to do so, but IDEA makes sure they don’t argue too much – usually!)  I was also told that the chances of autism were 1 in 10,000.

The latest data I’ve heard is that it’s now 1 in 68 children.  That’s scary to me!  I get asked all the time if I think there is more autism and what is causing it.  I don’t know the answer to either.  I think there are many things causing it – that’s why doctors can’t pin it down.  Maybe it’s allergies to casein or gluten in some people.  Maybe it’s genetics in some cases.  Maybe it’s stomach issues.  Maybe it’s environmental.  I don’t know.  I don’t think about it much as it doesn’t matter to me.

Is there more?  I don’t know that, either.  Sometimes, I think the higher numbers are because doctors know what to look for and are finding even the mildest cases.  Those same mild cases might have just been called eccentric a few years ago.  Again, it doesn’t matter to me.  Should it?  Probably, but I have my hands full right now.  I’m always thinking and planning for the kids – I have little time to think about the why anymore.

The kids have changed so much over the years.  If you would have told me when Casey was 8, 9, 10 years old that she would be going places with friends and volunteering at local organizations, I would have laughed in your face.  At that time, she was spending hours screaming and beating her head into the walls.  She didn’t sleep through the night and if her schedule changed, hell came to our house.

Rob never slept.  He was constantly looking for things to jump off of or into.  He had no sense of danger and darted away from me more times than I care to remember.  He was picky about what he would eat and he saw no reason to talk.  He didn’t have the meltdowns that Casey did and he’s still much more mellow than she is.

Today, he sleeps through the night almost all the time.  He is beginning to try new foods and is willing to go new places, for short periods of time.  She sleeps and loves to go anywhere she can.  She wants new experiences and doesn’t hide from strangers anymore.

Some things haven’t changed, though.  I still have to help with their baths and showers.  I have to monitor their food intake and keep a constant eye on them when we go anywhere.  Neither darts off anymore, but that’s a hard habit to break – and I’m always worried that a stranger might lure them away.  I still worry about their future and I still have to plan most things down to the last details.  And I get tired.  And frustrated at times.  Sometimes, a good cry is the best medicine.

It’s hard to believe autism has been a factor in my life for 30 years.  It’s hard to imagine a life without it.  But, really and truly, I wouldn’t change my life.  God gave me three amazing kids with their own special talents.  Autism made me stronger than I ever dreamed I could be.  It also gave me a reason to use the nasty temper God gave me, too.  (Once I’m pushed too far – watch out!)  I’ve met close friends that I would never have known without autism.

I know you have tough days.  I know you have days that crying is the only thing that helps.  But, I also know that you will have good days, too, sooner or later.  Maybe your good days won’t look like mine and that’s okay.  We all need to take the good we see whenever we see it and enjoy every minute we can!

So – Happy Birthday, Casey-pie!  Here’s to another 30 years of living and laughing with autism!

 

 

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A Big Thank You!

It’s been a year since I started writing this blog and it’s been a great experience!   I didn’t realize how much writing about our lives would help me – and I love interacting with each of you!

When Casey was diagnosed in 1992, the hardest part was feeling so alone and the only thing people knew about autism was what they saw in the movie “Rainman.”  (By the way – loved the movie, even if I later learned life with autism wasn’t quite as depicted.)  My biggest hope is that by sharing our dreams and hopes, our struggles and what we’ve overcome and our day to day lives will keep others from feeling that intense loneliness.

Also, by sharing our circus, we are spreading the awareness that all families desperately need.

Casey picked out the picture for this.  Sesame Street is the best, you know!

Remember – April 2nd World Autism Day.  Wear

Here’s to another year of laughs and love!  You all rock!

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Autism and the Problem with Public Restrooms

Autism and Public Restrooms

Anyone who has a special needs family member probably already knows what this post is going to be about.  It’s an issue we all have to deal with and one that isn’t going to go away anytime soon, most likely.  When my kids were little, it never occurred to be that going to the bathroom was going to be a problem.  Then they grew up.

Rob is claustrophobic and has super sensitive hearing so even when he was little, going to the bathroom anywhere but home or grandma’s house was an issue.  The noise of toilets flushing and electric hand dryers, not to mention the voices that bounced around the small tiled rooms, were enough to convince him to not use the restroom in public – or in school, if he could avoid it.

Casey didn’t have the same problems he did.  She hated the noise, but kept a finger in her most sensitive ear until she could get out of the restroom.  Now that they are both older, the real problem for us is finding a family restroom.

I refuse to let Rob go into a men’s room when there are several stalls.  Not that I would hesitate to barge into a men’s room if I thought he was in trouble, but it’s really not at the top of my list of things I want to do.  I have no idea what kind of person might be in the restroom – and no idea what Rob would do if someone grabbed him.  I would like to think he would beat the crap out of the stranger, but in reality know that Rob wouldn’t do that.

If the men’s room happens to be just the one stall, I let Rob go in, while I stand by the door, holding it open an inch or so, just so I can be sure he doesn’t accidentally lock himself in.  I can hear when he is finished and we go on our way.  Casey can use the restroom on her own and would never dream of going into a men’s room. (Which brings up another pet peeve of mine!  Why do so many restaurants insist on labeling the rooms cutesy names to go with the theme- like hens and roosters?  I worked years to get my kids to understand men and women!)

So – our problem?   Few women give it a thought when they enter a restroom to find a mom and a cute little boy.  When they enter and find a 5’10” 250 pound young man, however, they are not so forgiving.  I don’t blame them, but I do wish they would try to understand before they pass quick and negative judgement.  Do they really think he wants to be in there?  He has no interest in seeing anything – he wants to wash his hands and get out of that noisy place!  Unfortunately, we run into nasty people who can’t seem to keep their comments to themselves.  Trust me, Rob hears everything they are whispering and it hurts his feelings.  I get mad.

We were at their neurologists office a few years ago.  It’s a two hour drive from our house so by the time we get there, everyone needs to use the restroom.  The doctor’s office is in a medical building, so there are people with special needs everywhere.  Rob was still in a stall when a lady walked in.  She smiled at me, ignored Casey and about had an accident in her pants when Rob popped out of the stall.  (Seriously – in the next few minutes I would come to wish she had, just so I could have said something nasty to her.  God forgive me.)

She let out a yell and wanted me to go get security.  I tried to explain he was with me, but she wouldn’t listen.  Her loud words were getting to him and he started rocking and humming.  The louder she got, the louder and faster he stimmed.  So now I was trying to calm him down while she was still yelling and Casey is giggling hysterically because she is nervous and scared.  By now, all I wanted was to get us out of the restroom and back to the doctor’s office.

But she insisted on making comments about my parenting skills, him being in a ladies room and how I couldn’t control either of them.  And Mama Bear came out.

I get it.  You run into a restroom and aren’t thinking about anything but the next thing on your shopping list.  And you run right into a giant young man who is humming and rocking.  He startles you.  But don’t you think there might be a reason he is in there?  Why not take a second and listen to his mom before you get upset?

When my mom and I took the kids to Virginia last year, my biggest worry about the trip was finding a restroom for Rob on the way.  Luckily, most of the rest stops along interstates have family restrooms that Rob can use.  And I made him go to the bathroom when we stopped to eat at restaurants as they often have just one stall.  But, families shouldn’t have to worry about how their children are going to use the restroom!

What if you have an adult who needs changed?  Have you ever seen an area in a store where that can be done? Unless you choose to lay them out on the bathroom floor, you have little choice.  Why can’t family restrooms be more readily available?  A restroom that is big enough for a wheelchair to get into?  I understand this costs money and we’ve come a long way with handicapped areas, but there is still room for improvement.

We need more understanding of young men or women who are in the “wrong” restroom.  Maybe I am just a paranoid mom, but I’m not taking any chances with my kids and I know most people feel the same way.  Rob goes where I go or where I know he is the only person in the restroom.  (Yep – when the door is unlocked, I peek in to be sure before I let him go in.)

OK – my rant is over.  Have any of you ever encountered issues like Rob and I do?  Honestly, most women are kind, but we have scared more than a few little girls and I don’t like doing that.  It’s the cruel and unnecessary comments that put me over the edge.

 

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More Never to be Forgotten Rules for our Autism Home

More Rules for our Autism Family

A few weeks ago, I wrote a post about the unique rules we follow in our house – often without even thinking about them.  Many people enjoyed that post and asked for more, so here we go.

  1. Casey’s feet can never be touching the kitchen floor when the lights get turned on or off.  Seriously, she flies through the room if she thinks someone will flip the switch while she is in there.  And if she is getting a drink from the refrigerator, she’ll hop out of the room if the light gets turned on.  If she has to turn it on herself, she jumps when she turns it on so her feet aren’t touching the floor.  I just asked her why she does that.  (Even though why questions are nearly impossible for her to answer – I thought I’d try!)  Her answer?  “Yes.”
  2. Casey has to hop into buildings.  Truthfully, this is much easier than it used to be!  When she was younger, she jumped through store doors onto one foot, jumped back on the other and then jumped through on both feet.  While this doesn’t sound like any big deal, when you are walking through a crowded door, people are not expecting a child to jump into them from behind or that she will jump back out the door.  I tried pulling her through the doors, but as you can imagine, that was a classic failure!  It got so bad that I either held the kids back from a store door, or sent Mandy in first to keep people back while I guarded the door so no one could get too close as she jumped back.  Thankfully, now, she just does one hop into every store and every house (including ours!).
  3. If something is written on the calendar, it will happen.  One year, Santa brought Casey a calendar that had every holiday imaginable on it – including ones from around the world and religions other than ours.  I, of course, never gave a thought to checking what was printed on the calendar.  Big mistake.  Huge mistake.  Casey decided we had to celebrate everything – Boxing Day, Kwanzaa, Cinco de Mayo, Hanukkah – you get the idea.  Every day seemed to have something on it and she was determined to celebrate them all!  Believe it or not, Santa did the same thing the next Christmas, but got smart enough to open the calendar and black out everything that we didn’t celebrate.  On a brighter not, we learned a lot about other customs that year – I tried to find something simple for each holiday so we could “celebrate” if she was going to have a meltdown over it.  Now, “Cancel” is the best word!!  She completely understands writing cancel on something means it’s not going to happen and while she isn’t always happy about it, she doesn’t get upset.
  4. Windows cannot be left open until Rob deems it’s time. He will shut doors and windows for days before he decides it’s warm enough to leave them open – or I can convince him it’s okay.  His windows are never to be open when he is home.  And he refuses to shower if the window in the bathroom is open.
  5. Casey loves cherry tomatoes and ketchup, but refuses to eat larger tomatoes because they aren’t tomatoes.  (Neither of them generalize well.  Teaching them that beagles and labs are both dogs was a challenge!)
  6. While Rob wears the same clothes all year (wind pants and sleeveless shirts – rarely, if ever, shorts), Casey dresses by the calendar month.  From October 1st – March 1st, she wears two shirts every day – a turtleneck and sweater or sweatshirt.  From March 1st – April 1st, one shirt with long or short sleeves.  May, she can wear capri pants and starting in June, she will wear shorts and t-shirts, until September when it’s time for long pants again.  Now, this sounds like a great idea, but when you live in Ohio, where you can be wearing flip flops one day and snow boots the next (did that a few weeks ago!) she can get really warm or really cold.  But – her schedule can’t be changed.  I’ve tried and then I decided she is old enough to make her own clothing decisions.
  7. Clothing is dirty as soon as it touches your body and cannot be worn again until it’s  be washed.  I mean, if she puts an outfit on and we decide to go somewhere, she will change and throw everything down the laundry chute.  If I’m quick enough (HAHA!) I’ll run down and put those clothes on the dryer so they can just be refolded and stuck in her pile of clean clothes.
  8. Rob has to have the light over the bathroom sink and the kitchen light on before he will take a shower.  The bathroom light, I understand, but no idea about the one in the kitchen.  He’s been doing it for years with no signs of stopping, so I don’t notice it.  I did make the mistake of hitting the switch one evening and turning the kitchen light off – and here comes my dripping wet boy yelling “lights on!” as he slipped and slid from the bathroom to the kitchen to get the light back on.  (Another rule of most autism homes – you never know when a naked or half-naked person may wander through!)
  9. Casey will only drink water from the bathroom sink.  Never, ever will she drink from the kitchen sink.  No idea why or even when she started doing this.  She knows I make their koolaid from the kitchen sink – she has helped me make it before.  But to get a drink, nope – no way!  If she is thirsty and someone is in the bathroom, she’ll stay thirsty instead of using the faucet in the kitchen.
  10. Holidays and birthdays are pretty special in our family.  We have traditions that we love and I truly try to make each of their birthdays as special as they are.  Casey, however, has a hard time relaxing and enjoying the whole day because she has a “schedule” in her head that must be followed.  On a birthday, you get to pick where to have supper, then family comes and you open presents, then you have cake and ice cream.  Until she blows out her candles (we finally got her to agree to a smaller number of candle than her birthday a few years ago!) and has her cake, she doesn’t smile much.  Birthdays are serious business until everything is completed – then you can relax and smile.   Holidays are the same way.  Until the schedule in her mind is complete, she is unable to truly enjoy the day.  I’ve tried explaining to her that we will do everything and she can have fun, but she just can’t stop checking items off from the list in her head.

I hope you got a few giggles from our continued list of rules!  Life is always pretty exciting around here – it keeps me young!  (or at least that’s what I tell myself!)

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Autism and Having Hope – It’s not Only Possible, but Necessary!

Autism and Hope

A few days ago, I posted a meme on our Facebook page about always thinking and worrying about my kids and their future.  It wasn’t meant to be anything other than a reminder to other parents (both of typical kids and special needs kids) that everyone feels the same – a near constant state of worry.

But another mom commented that sometimes, she felt pictures like these could be offensive – that if our kids see them, they may think we aren’t proud of all they have accomplished.   I felt terrible – I never meant for anyone to feel like that about something I chose to share and I told her that.  It also made me think.

When I started this blog and our Facebook page, it was a way to share our lives and spread awareness of autism.  I wanted to make people laugh about the craziness that sometimes comes with autism (and I have another list of “rules” to share soon!) along with letting other parents know that black times do end.  Maybe not as soon as we wish they did, but they do.

I wanted to let parents know that it’s ok to be tired and frustrated and to ask for help.  I have a terrible time with all of this.  I let guilt get to me that I should just let roll off my shoulders.  I’ve been an autism mom for almost 30 years – you would think it would be second nature to me to take things as they come and let little stuff go.  I try, but it isn’t easy.

One of the most important things for all families is hope.  Even when behaviors are occurring constantly and you haven’t slept in weeks, you have to have hope.  Faith and hope will move the mountains in your child’s life.  When you seem to have nothing but tears and anger, dig down deep and find that spark of hope.  Your child’s life depends on your own hope.

You are your child’s best advocate.  Teachers and doctors may have a bunch of letters behind their names, but you are the expert on your child.  YOU!  Only you know what sensory issues may be occurring.  Only you know what sets of tantrums in your child.  You know the dangers your child is unaware of.  Yes, professionals can give you advice, but they have to listen to you first.

You have to show them the hope you have for your child.  You have to share the dreams you have.  Yes, those dreams may have changed a few times, but you still have them.  Maybe your dream that your child will have a job they enjoy – whether that is working in an office or working in a sheltered workshop.

Maybe you dream that your child will be able to live on their own at some point.  Or be able to travel.  You can still dream!  Let your imagination soar and then make a plan to help your child reach that point.  I’ve had to change dreams for my kids several times, but I’ve finally found the perfect dream for all of my kids – happiness.  Yes, I know that sounds simple, but isn’t that what everyone really wants?  A happy life?

My hope is that Casey can continue to find opportunities to explore the community and volunteer.  She loves going new places and trying new things.  (New people, she can do without, but she has learned to handle that, too).  I hope that her life is full of new experiences, adventures and things that make her giggle that amazing giggle of hers.

For Rob, I dream of him always having people around him that accept him for the amazing young man he is.  I hope he can continue to find happiness in watching clouds float by, watching water flow, ripping magazines and building power poles and trees with his Legos.  I want him to always find things that make him smile.

I pray that Mandy and Cory find jobs that always feed their passion for life.  I hope they always look for the good in a person’s heart.  My dream for them is that they always  have faith – in themselves, in each other and in God.  I hope they find laughter in every day and that they share those laughs with others.

We have had black times in our family.  There were many days that I sat and cried – or just sat because I was too tired to cry.  There were screams and broken things and sleepless weeks and constant sameness.  But I always had hope – maybe just a tiny glimmer in my  heart, but it was there.  I prayed and I screamed into my pillow.  And I hugged my kids and told them I loved them more than anything.

I told them how proud I was of them.  It didn’t matter if it was because Rob tried a new food or that Casey got control before she lost her temper or Mandy had an excellent grade card.  I was proud when we made it through the grocery store or when they learned to wash their faces.  I was proud and I dreamed for more.  You have to do that, too.  Always, always dream for more.  Your dreams won’t be the same as mine – or even the same for each child.

You may feel at times that you simply cannot handle autism anymore and that’s okay.  It doesn’t mean that you don’t love your child – it means that sometimes, life is tough – for all parents!  You can be so proud of your child and frustrated at autism.  Your feelings are okay – don’t let anyone tell you different.

Hope can be a hard thing to hold on to, especially with autism.  Everyone feels hopeless at times.  The important thing is that you find that spark in you and let it grow.  Hope and faith (in yourself, in your child, in God) are so important in our lives!

Always reach for your dreams!