Tag: parenting autism

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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!

 

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Autism, Ear Infection and More Mom Guilt

Autism, Ear Infection and Mom Guilt

It happened again this week – another huge case of autism mom guilt.  And another day that the communication problems that autism causes has hurt one of my kids.

Ever since I was sick a few weeks ago, I’ve been watching the kids closely.  As bad as influenza is going around, I thought there was little chance that one or both of them wouldn’t get it.  But, days passed and they both seemed fine, so I started to worry less.

I was a little concerned about Rob.  He didn’t seem quite like himself, but he never said “hurt” or “Let me see” so I tried not to hover over him too much.  He was eating and sleeping – but his eyes looked funny.  I just had a gut feeling something was up, but he still wouldn’t say anything.

So, I waited.  He went to camp and had a great time.  He came home from the workshop on Monday and said “hurt” and pointed to his ear.  Ok – now we are getting somewhere.  I asked if he needed to see Dr. Myers, but he said “no fanks” and ran back to his room.  If his ear was hurting, it didn’t seem to be bothering him too much.

He didn’t mention his ear again until Thursday.  By then, I knew he was in pain and that it must be bad.  Rob has an extremely high tolerance for pain, so when he finally says something hurts, it’s bad.  Of course, by the time he mentioned it, the doctor was closed for the day and we had to wait.

When he saw the doctor Friday morning, he tipped his head to him (showing him the hurt ear) and said “hurt.”  He had a slight fever and he wanted to sleep.  The doctor said the infection was so bad in that ear that the ear canal was swollen and he couldn’t see the ear drum.  I felt like someone had punched me.

The doctor was concerned his ear drum may have burst.  Rob looked so sad and I was ready to cry.  I truly do know that it’s impossible for me (or any of us) to always knows what’s going on with our non-verbal kids, but the guilt I felt was so strong.  I knew for days something was up with him – why did I wait so long to take him to the doctor?

I have all sorts of excuses.  I thought maybe he had a touch of the flu (my ears hurt terribly!).  He didn’t have a fever (or at least not one high enough I noticed) but his eyes did look off.  He didn’t want to go (when he was little, he saw doctors so often that he cried as soon as we got near an office.  It wasn’t until a few years ago that he and Casey started telling me they needed to see Dr. Myers.) so I thought I’d wait until he told me he needed to go.

None of that matters, though.  The only thing that mattered to me was he was hurting and how to help.  He got meds and ear drops.  I wondered how easily he would let me put drops in the sore ear, but he must have understood when the doctor said they would help because he tilts his head as soon as I mention the drops and he keeps his head tilted for a few minutes to let them get into his ear.

He is taking his medicine without issue.  It’s only been a few days, but I was hoping for more improvement than I’ve seen.  He is talking a little more, but he wants to lay on his bed and not rip paper or play with his iPad.  He hasn’t said anything about his ear.

Truly, I feel like the difficulty we have in communication is the worst part of autism.  The sensory issues are tough at times, but we adapt.  The constant need for the same things in the same way gets old, but we are handling it.  But – when they can’t tell me when they are hurt, it hurts us all.

Even now, he can’t tell me if he is feeling a little better and I can’t tell.  I’m supposed to take him back to the doctor tomorrow if there isn’t any improvement, but how can I tell?  It’s just a guessing game – and this one involves his health and is important.

He has a communication program on his iPad so I tried to get him to answer me with that.  He pushes the off button and covers his head with a blanket.  The last time I went to check on him, he said “Good bye, Mommy Jen”  (translation – get out of my room and leave me alone!)  So I’ll wait and see and hope for a sign that he’s better before tomorrow morning when I have to decide about calling the doctor.

Autism and mom/dad guilt seem to go hand in hand.  I know I feel like I should be able to know everything about the kids – even as my head says that isn’t possible.  My heart argues that a mom who truly knows her kids would know when they are sick or when something is wrong.  I’m tired of the guilt.  I’m tired of trying to out-think autism.

Do me a favor and take my advice.  Do what I’m trying to do today.  Let go of the guilt – it makes you second guess everything until you don’t really know what you are seeing/feeling. Every parent makes mistakes – even the ones whose children are able to communicate.  Don’t let autism make you think that you aren’t an awesome parent, because you are!

 

 

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Autism – High Highs and Low Lows in the Same Day

Autism - Highs and Lows

Anyone who knows autism knows that we can have the highest highs and the lowest lows, often within a few minutes of each other.  I had a day like that last week.

I’ve shared before that Rob is a picky eater.  While he is willing to try many new foods now, he doesn’t voluntarily do it.  On this morning, he was ready for work and looked in the refrigerator.  He grabbed a container of canned pineapple and wanted some.  He loves fresh fruit but refuses to touch anything canned.  I think the syrup is too gooey for him.

Anyway, he was insistent that he wanted the pineapple, so I got a fork, stabbed a piece and handed it to him.  I knew he would refuse to take it, but I was happy he was at least willing to look at it.  To my shock, he grabbed the fork, ate the pineapple and wanted more.  I couldn’t get a bowl for him quick enough!

This mom was over the moon and sky high!  He voluntarily tried a new food – a syrupy food!  If he would have had more time, I would have let him eat the whole container, just to watch him.  I have something else I can pack in his lunch – what an awesome way to start our day!

He had no idea why I was so excited and looked at me like I was  crazy, but he did grin as he left and said “pineapple.”  This was huge and I let everyone know what had happened that morning.

Later that evening, the kids had a dance to go to.  They were both excited.  Casey loves to “dance” while he likes to lay and watch the lights spinning and flashing on the ceiling.  When the music started, we danced “The Twist” together and then Rob and I went to sit while she stood at the edge of the crowd and swayed to the music.

Usually, I try to get Rob to get up and dance more, but I was so tired that night (still trying to get my energy back after being so sick!) that I just sat and watched Casey and the other dancers.

And then it hit me.  This wave of intense sadness.  I saw so many other people her age and they were dancing and laughing with friends – and she was off by herself.  I wanted so badly to see her out in the group, laughing with friends and being silly.  I knew she was happy where she was.  I knew she didn’t care to be in the middle of a crowd.

But it just made me think about all the things that they will probably never do.  Things that I take for granted.  Most days, I don’t think much about it  as I know the kids are happy.  They get to do most of the things they want to do – and what they don’t do is more because mom says no, than their autism.  They go places with friends and staff from  the workshop.

I know all of this, but at that moment, I just wanted to cry.  What if Casey wanted to be in the crowd but didn’t know how?  What if Rob wanted to go sit at a table with the guys and not sit on the bleachers with me?  The thoughts just wouldn’t stop coming.  I just wanted to go home.

These highs and lows are part of what makes autism so exhausting at times.  The range of emotions we feel during the day can swing like a huge pendulum.  Add to that every day concerns about work and groceries and families and household matters.  There are days when I’m so tired when I wake up that I actually think about how long it will be before I can go to bed.

Luckily, most of our days are pretty mellow anymore.  Or, I’ve gotten so used to the circus that I don’t notice the craziness (and this is a distinct possibility!) or the noise.  We don’t have too many super lows (knock on wood!) right now.  I’m always wondering when the next lows will hit, but I try not to think about it too much.  Why ruin a good day by worrying about what might not happen?

I just heard from a mom a few days ago on our Facebook page  (check it out, if you haven’t had a chance, yet.  I try to post every day!) who wanted to thank me for not writing “rainbows and unicorns” about autism.  She liked that I was raw and honest about our lives.  A true high for that day!  When I started this blog and our page, I promised myself that while certain private details about the kids would stay private, I wanted everyone to understand that autism isn’t terrible.

It’s hard and it’s easy some days.  It’s exhausting and exhilarating.  It’s brought so many new friends to our lives and taught me so much.  It makes me laugh and cry and get angry.  When Casey was diagnosed, the books I read were “My child was cured” books or “Your child will never….” books.  Where were the books that said  it was ok for me to be tired?  Where were the parents who got fed up with OCD?  Was I the only one?

So I promise to share our highs and lows with you so you know it’s ok to feel however you feel.  Be happy, be tired, feel guilty, be relieved, be angry, be irritable, be whatever you need to be.  And if you need someone to talk to, message me.

 

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Autism and Our Very Own Personal Rules

Autism and our Very Own Personal Rules

My parents and I were laughing yesterday about the details that are left out of the kids’ ISP’s.  These plans are supposed to make it possible for anyone to come into our home and know what to do with the kids and how to deal with their autism, in the event that someone who knows them is unavailable.

I was actually thinking about this last week as I battled the flu.  As I kept hearing about people being admitted to the hospital with it and my fever kept going higher, I worried about the kids if I had to be gone a few days, unexpectedly.  I know it’s silly, as I have any number of people who would be here to take care of the kids, but still – I wondered.

Their ISP’s are good, but if I had to list everything that people would need to know, the plans would be 100 pages long and still not complete.  I can’t still here right now and think about all the little details that we live by because of the autism, but I thought I’d share a few and see what silly, but so desperately important, rules you live by in your home.

#1.  Waffles are eaten in sets of 5 – 2 for Casey and 3 for Rob.  She refuses to eat more than 2 because there is only room for 2 in the toaster.  He wants 3 because….  well, I have no idea why, but he eats them in 3’s.  And they can’t be cooked – he takes them right from the freezer and eats.  Never add anything to his – only pancakes get syrup!

#2. Casey takes baths and Rob takes showers – and never, ever say the wrong one!  They will both emphatically correct you if you ask Casey to take a shower or Rob to take a bath.  Casey always goes first.  Her hair can only be dried at Grandma and Grandpa’s house, unless she is going somewhere special.  Only then am I allowed to use a hair dryer near her.  Snacks and pills should be waiting as they come out of the bathroom.

#3. Different shaped pretzels of the same brand can’t be eaten.  Rob will eat the nuggets and the long rods of one brand, but only the midgets of another.  And what he eats at home can’t always be eaten at Mandy’s house.

#4.  Casey will not bring her coat from her room until her shoes are on.  She will make 3 or 4 trips up the stairs and never bring her coat until it is time to put it on.  And once she puts it on, she won’t take it off (including hat and gloves) until she leaves.  Even when her ride is running late, she refuses to take it off.  She also has to sit in a certain spot on the love seat to wait till her ride comes.

#5.  Certain clothes have to be worn together.  I’m such a terrible mom that I washed Rob’s wind pants last week and not the t-shirts that have to be worn with them.  Poor guy had a stressful night until his red Coca-Cola shirt got washed the next morning and could be worn with the right pair of black wind pants.

#6.  Rob’s TV can only have HGTV on it.  Even if his favorite movie is on another channel, if you change the channel, he yells and changes it back.

#7. Casey has “after work before bath” slippers, “after bath before bed” slippers, “Saturday afternoon before bath” slippers, “Sunday afternoon before bath” slippers and “snow day” slippers.  Never try to give her the wrong slippers.  And don’t try to understand her system.

#8. She won’t eat leftovers.  Even if the food is still on the kitchen counter, but has been put into containers to be saved, it’s leftover and she won’t touch it.  She remembers what we’ve had to eat, so even if I put leftovers in a pan to warm it up, she refuses to eat it.

#9. When they are going to work in the morning or going with their dad, they have to come and go through the front door.  Any other time, they use the back door.

#10. They both need fans, night lights and a huge pile of blankets to go to sleep at home, but anywhere else, they don’t need it all.

This is just a few of the things we do every day without even thinking about it.  What unwritten autism rules do you have at your house?  I’d love to hear about them!

 

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Once upon a Snowy Evening – Autism and the Internet is Out

Once upon a Snowy Evening - Autism and the Internet is Out

I try not to rely on the internet and the kids being entertained by their iPads.  Most nights, the internet could be gone and no one would be the wiser.  Rob has many apps on his iPad that he uses often, so when he can’t search for Chevy truck parts or whatever has caught his fancy for the day, he’ll just draw or play another app.

Casey, on the other hand, loves You Tube.  And watching music videos.  And when she decides that is what she wants to do, there is little I can do to change her mind.  So, when the internet went out a few evenings ago, I was tense and stressed. She was not pleased.

It was snowing and even though Rob had assured me we were only getting a little bit, he was worried about going to work the next day.  (One day they had to close, we had little snow, but ice)  So he began to get anxious and he paced from his room to the dining room to look out that window. (Yes, his room has windows – and one even faces the same direction, but apparently, when you are checking the weather situation, you can only look out the dining room window that is closest to the kitchen!)

I showed Casey her Elmo apps and crossed my fingers.  She played with them a few minutes and then hit her iPad. “Fix it, mommy!”  “I can’t, Casey – the internet is broke.” “Music, mommy!”  I handed her my phone, but she refused to look at it.  “Why don’t you fold socks, Casey?”  “NO!”  “How about a color by  number?”  “NO!”  She flopped back on the couch and made her mad face.

I gave up trying to write and focused on keeping her calm.  Finally, I thought about my photo boxes.  She has her own set, but looking at my photos is always an exciting event.  Thankfully, she go absorbed in the pictures and the evening passed without much drama.  Rob couldn’t go to sleep, but he wasn’t too loud, so she went to bed as usual.

What really bothered me was the reaction I got from someone else about the evening.  This person isn’t an autism expert by any means, but when I was talking about how worried I was that she was going to have a royal meltdown, the response I got was I needed to tell her I couldn’t fix it and make her understand she can’t always get what she wants.

Really?  Ya think?  (and I’m editing my true thoughts here!) That’s not something I had ever considered doing – thanks so much for the advice.

And, yes, I know I should be more patient with people, but when I’m tired, I just don’t  need advice like that.  I know it was meant to be a helpful solution.  I know not everyone understands autism.  I know autism is confusing to those of us who live with it every day.  But – I seriously did not care at that point.

Casey and Rob have made amazing strides in their abilities.  They have grown and changed so much, but there are simply things that cannot be explained easily.  I remember once the power went out and Rob was insistent that I turn the lights one.  “Lights on!” became his phrase of the night.  Over and over and over until I thought I would lose my mind.

My brother decided to bring a generator to us so Rob would calm down.  He was on his way when Rob got frustrated and hit the light switch in the kitchen – and the lights came on.  Of all the rotten timing!  The look he gave me was priceless – he was sure I had been lying to him all evening.  (trust me – by the time I heard “lights on!” for the 100th time, I would have fixed the electricity myself!)  So now, when the power goes out, Rob flips the kitchen light switch as soon as it goes out.

My point is – there are simply some things  I can’t make the kids understand.  I have tried – many times.  I’m not being a lazy mom.  I know I shouldn’t have gotten irritated by the comment and maybe I wouldn’t have at another time, but I was stressed.  Sometimes, I just have to go with the flow and ignore people.  But – sometimes, I really just want to smack people.  (insert evil giggle here!)

So – lessons I learned from the other night.  Behavior modification (otherwise known as bribery) is perfectly acceptable to keep a meltdown away.  Some people will never “get” it.  Smacking people is never acceptable.  I don’t have to care what anyone else thinks.

Here’s to an endless supply of data and super fast streaming for each of you!

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Autism Siblings – Unwavering, Unconditional Love and Laughter

Autism Siblings

I’m sure I’ve mentioned before that one of my biggest worries with having two kids with autism was my “typical” daughter.  I wanted Mandy to know that she was just as special and as loved as Casey and Rob.  It’s not easy to do that and I often felt that I was failing them all.

Casey was almost 3 when Mandy was born and we were surprised that she took an immediate interest in her little sister.  She loved watching Mandy sleep and to put her binky back in her mouth when she lost it.  When Mandy was old enough to lay on the floor under a mobile, Casey was often right beside her watching the same toy.  When Mandy cooed, Casey giggled.  When I talked to Casey, I might as well have been talking to the wall.  Mandy had an immediate effect on Casey.

Casey got her official diagnosis of autism two weeks before Rob was born.  Her neurologist told me that since I had one child with autism, I should watch for signs from either of the other kids.  Mandy was talking and loved being around people, but it was possible that she would regress at any time.  I didn’t even think about Rob having autism at that point – I was too worried about getting Casey the help she needed and watching Mandy for signs she was losing skills.

When Mandy turned 3, I was sure she was fine.  She talked non-stop and enjoyed pretending and playing with anyone.   She talked to Casey, even if she didn’t get a response, and she played odd games with Casey, just to hear her giggle.  One of their favorites was to toss toys over their shoulders until their closet was empty – laughing the whole time.  Sitting in the doorway watching them was so much fun and gave me hope that Casey would ok.

Rob followed Mandy from the day he was born.  Because they were so close in age, and she was small for her age, they were often mistaken for twins.  She talked for him, so he rarely had to make an effort to communicate.  He also had constant ear infections, so when he didn’t say much, our doctors weren’t too concerned.

When I tried to teach Casey or Rob skills that Mandy learned easily, she jumped in to make it more fun.  She didn’t know she was helping – only that she was “playing” with her brother and sister.  Unfortunately, there were many times that Mandy jumped in to help when Casey was having a meltdown and Rob was anxious.  I hated depending on her – she was just a little girl!

I hated that when she wanted to play with Barbies or horses, I had to sit at the top of the steps and play so I could hear what was happening downstairs.  I hated that Rob loved her horses as much as she did and was likely to take them while she wasn’t looking.  I hated that Casey loved chewing Barbie feet and Mandy would be furious their shoes wouldn’t fit anymore.

But as mad as Mandy would get, she was the first one to jump when Casey or Rob needed help.  She didn’t seem to notice that they weren’t like her friends’ siblings.  I worried that her friends would be mean to the kids, but they were accepted.  I think it helped that Mandy went to our local elementary school and Casey and Rob went to another one.  This gave Mandy time to grow and learn self-confidence  before she had to really deal with the cruelty of other kids towards her siblings.

I have often seen posts that say if you want to know how to treat someone with autism, you should just look to their siblings.  There is so much truth in that statement.  I never told Mandy she had to always be nice to her siblings – what siblings never fight?  But – while she may have gotten mad and yelled at Casey or Rob, no one else better even think about it.   She is a firm believer that only she can do that!

She knows just what buttons to push to get reactions from Casey and Rob and still pushes those buttons at time, just so they can share laughs.  They may not share fun like typical siblings, but the love and laughs are the same.  They tease each other (anyone who says people with autism don’t have a sense of humor haven’t looked closely enough!) every chance they get.

Mandy and Cory lived in Texas for several years and those were tough years for Rob.  Casey would look at the calendar and know when they were coming home for a visit, but Rob couldn’t understand time  or distances.  He just wanted Mandy and Cory to be home.  Now that they live here, a trip to their house is better than a stop at McDonalds!

I know not all siblings of people with autism are as close as mine are.  I wish they could be.  I wish I knew the magic answer.  The best advice I can give is always remember that each child has their own special needs.  Your typical child needs to have time just with you – no matter what you need to do to give it to them.  Spend the other kids to bed earlier.  I used to send Casey and Rob to school and take Mandy shopping and out for lunch once in a while.  When Mandy had special events at school, I was there and I left Casey and Rob with grandma and grandpa so I would be totally there for her.

Rob still follows Mandy around – just like in the above the picture.  Whenever Mandy practiced her trumpet, Rob pulled my old guitar out and followed her.  If she went in the pool, he was right behind her.  And he still thinks she has the best ideas.  He leans on her for comfort.  Casey does the same but she expects Mandy to take her everywhere she wants to go.  They both know they can twist Mandy around their fingers – but she doesn’t always do what they want.  Sometimes, she is mean and says no – and Casey will tell on her as soon as she can.

Close – knit siblings are still siblings, after all!

 

 

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An Autism Mom’s List of New Year’s Resolutions

Autism Mom's New Year's Resolution

Happy New Year!  I hope each of you had a Merry Christmas!  Now is the time that we all think about what we really want from the coming year and what we would like to change.  Getting organized, getting healthy and saving money are always at the top of most people’s lists and while I think those are all awesome goals, my list looks a little different, thanks to autism.

Resolution #1 – I resolve to ask for help when I need it – hopefully, before I have a meltdown of my own.   Asking for help is not easy for me and I hate doing it.  I know I  need to.  I know life is easier when I have help.  I know I have friends and family that are only a phone call away and who want to help the kids and me.

And I know how much I just hate to do it.  I have never liked asking for help – this isn’t something I learned from autism.  I have no idea why.  Maybe my stubbornness has something to do with it.  I always feel like I should be able to handle anything autism throws at me.  Is that unrealistic?  Of course – and the funny thing is, I know it’s crazy.  So – I’ll do my best, but this will probably be my most difficult resolution.

We all need help at times.  Reach out when you need to!  There are people willing to help you – you just may have to search for them.

Resolution #2 – I resolve to make time for me.   I don’t have to ask for help for this one – I just have to do it.  I need to write more, craft more, read more, yoga more.  I’m really good at taking care of others, but not so good at doing what I want for me.  I’ve been working at this for a few weeks, now, so hopefully, this will be an easy resolution to keep.

You have to do the same thing.  If you don’t have time for you and what you enjoy, you will burn out.  Been there, done that and trust me, it’s not pretty.  You can’t take care of your person with autism if you are burned out.  Helping yourself will help your child, I promise.  Do what you love and I guarantee dealing with autism will be easier.

Resolution #3 – I resolve to thank the people who help with Casey and Rob more.  And to thank the friends and family who send me texts or messages just to say hi and see how we are doing.   I can never tell you how much those quick messages mean to me – bright spots in my day.  I’ve made so many new friends thanks to autism and I hope that my messages to them help, too.  A simple hi or a smiley face can truly brighten someone’s day.

To the people who work with Casey and Rob – thank you!  You don’t have an easy job.  I hope you understand that sometimes, when I am angry, I’m not angry at you – I’m just tired and stressed and don’t want to deal with autism anymore.  Please know that I get tired of hiding paper clips and Q-tips and juice boxes at home, too.

Resolution #4 – I resolve to spread more awareness of autism.   By writing this blog, sharing our circus and keeping up with our Facebook page.  By taking the kids wherever they want to go with whatever supports they need.  By telling those who stare why Casey and Rob are doing what they are doing.  By controlling my temper when the stares are accompanied by rude comments and by losing it when I need to.

We all benefit with more awareness.  It won’t be just our autism families who are helped.  Any family who has someone a little different might find a more accepting world.  A kinder world – isn’t that something we all want?

Resolution #5 – I resolve to follow my own dreams and not let autism take over my life.  This is a little like doing things for myself, but on a much larger scale.  It’s much easier to take five minutes to crochet or meditate than it is to spend hours planning how you can reach for your own dreams.  It’s hard for me to write as much as I would like – real life tends to get in the way at times.  This year, I want to reach for my own dreams and not just push the kids to reach for theirs.

This resolution works whether you have a special needs person in your life or not.  As parents, we always put the kids first.  I’m not saying to ignore your kids, but you do have the right to follow your dreams, too.

So, as we count down the last days of the year, think about what you really want your resolutions to be.  Take small steps and allow yourself to make mistakes – progress is rarely a straight and narrow path.  Just like the progress our kids make – it is often a small step forward, a step back, a step to the right, a step forward.  You can do it!

Happy New Year!  Thank you for following our journey!

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How to Help Families with Autism Enjoy the Christmas Season

Helping families with Autism Enjoy Christmas

This is such a busy time of year for everyone and, unfortunately, all of the craziness can be especially hard on the families who live with autism every day.  Now is the time for each of us to practice patience and acceptance even more than we usually do.  Here are some ideas to help everyone have a more Merry Christmas.

Please, if you are having a party, do invite the family with autism.  True, they may not come, but just being invited means so much to us!  Life is tough enough without sitting home and knowing that others just don’t want your family at an event.  Invite them – and be ready to accept them into your home!

Be understanding if they bring their own food for their little one.  Picky eaters don’t become “non-picky” just because it’s a party.  Don’t be insulted if they bring snacks – it isn’t meant to be that way.  It just makes having fun easier when they know their child has something to eat.

Perhaps you could light fewer scented candles.  The smells of the party guests (perfumes, colognes, etc) will be strong enough for anyone with a hypersensitive sense of smell.  If you have a place, maybe you could prepare a quiet spot for your guests.  It can be an empty room or just a spot in the corner for them to feel safe.

Speak to the child with autism!  Just say “hi” and smile.  You can’t imagine how happy you will make the parents by simply saying hi.  So many times, our kids aren’t spoken to because they may not answer.  So what?  Say hi anyway.  The child will know you spoke – and may even say a quiet hi back!

If you are buying a gift for the person with autism, talk to the parents first.  An adult with autism may still love child’s toys – like Casey with her Sesame Street friends.  Now isn’t the time to “force” the person to be an adult.  Buy what they like and enjoy the smiles when they open your gift.  As I’ve said before – Casey and Rob are getting some odd things for Christmas (think bubble wrap and children’s toys) but I don’t care.  I can’t wait to see their excitement Christmas morning, after they see what Santa brought.

Be sensitive to a family’s traditions.  Casey still believes in Santa and I don’t want anyone telling her different.  She can’t wait to hear sleigh bells Christmas Eve and pretend to be asleep so Santa will stop at our house.

Be understanding of the over-excited child at a parade or school function.  Most people seem to assume the child is being a “brat” and that parents can’t or won’t control him/her.  You may simply be seeing a child with sensory issues.  And if you do happen to see a child (or adult!) having a meltdown, don’t judge.  Offer the parent a smile and help, but remember, we deal with this every day and don’t be insulted if we decline the offer.

Parents- you know your child best.  I know not to take Rob into crowds for too long or his anxiety will ruin the day for all of us.  He doesn’t enjoy parties and even at our family dinner, he will join us for short periods of time, but he also stretches out in my brother’s old room for some peace and quiet.  And that’s ok.  Casey is always right in the thick of things, but once her plan has been finished (eat then presents) she just sits and watches the silliness.  She will join in games, sometimes, but others, she just watches and laughs.

While Rob is a picky eater, I don’t have to take anything special for him to eat.  He likes ham and rolls, so he nibbles on those and disappears upstairs again.  He likes to open presents, but when he’s done, off he goes again.

If there is something special Casey wants to do, I’ll find someone to take her or someone to stay with Rob so I can take her.  She loves going to see “The Nutcracker” every year when my niece, Anna, is dancing, but Rob won’t even consider it.

I have a hard time with this, but I’ll share my advice with you.  Parents, it’s ok to do things without your child.  I always hate feeling like I’m leaving them out, but it’s ok that I want to enjoy things without worrying about their needs.  Maybe one of your holiday traditions can be a dinner and movie without the kids.  Or just a drive around to see the light displays.  It’s hard to leave them, but it’s ok.

When you are taking your child to a new place, take whatever they might need to enjoy it with you.  Pack a bag of snacks or fidgets or whatever they like.  If they are happy and relaxed, you will all have more fun.  Who cares what others think?  Even parents of “typical” kids are giving them iPads or cell phones to entertain them while waiting – why shouldn’t you do the same?

Expect that your child might be “off” for a few weeks. When Casey was little, December was not a good month at all.  The meltdowns and screams were terrible. It wasn’t until she was older that we discovered why.  She was never sure she had been “good” so Santa would stop.  She knew how upsetting her meltdowns were to me and was worried Santa would think she was bad.  It was heartbreaking for me to discover that.  She was (and still is!) such a literal thinker.  Good or bad – there was no middle ground.

As for us, we are excitedly waiting for Santa to bring some unusual gifts our way.  We are singing Christmas songs and planning a big day of baking soon.  We still have some gifts to finish creating (aren’t those the best kind?) and Christmas movies to watch.  We have Christmas socks (imagine that!) and Christmas shirts (with Rob saying “no fanks, please, mommy Jen”) and are counting the days till we are all together at my parent’s house.

I hope each of you can find the peace and joy of the season amid the chaos of autism.  Enjoy every special moment that is unique to your family!

 

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Autism and Odd, But Fun Christmas Traditions

Autism and Odd, But Fun, Christmas Traditions

Every family has their own traditions for holidays or other special days in the year.  An autism holiday tradition  may not be like other families, but they are what works for us.  Each family needs to find what works for them and makes their family happy.  Who cares if it isn’t something that anyone else would understand?

Our family does have a few traditions, but we are also very good at flying by the seat of our pants at times.  We decorate the weekend after Thanksgiving and the kids help with the trees in their rooms and our “family” tree in the living room.  Each of the kids have gotten special ornaments every year for Christmas so they have big collections.  Looking at that tree is like watching them grow up all over again – from the Baby’s First Christmas ones to the Power Rangers to the Rug Rats to Pooh and Dr. Seuss.

Another tradition is to open presents from each other during the day on Christmas Eve.  I started this when they were little and just couldn’t wait until the next day.   Casey, Rob and Mandy would exchange gifts and it was often enough to keep them busy for a few hours.  I also wanted Casey and Rob to understand that Santa didn’t bring everything.

Santa still comes to our house.  I don’t think Rob ever really believed that a man came into our house on that night, but Casey still firmly believes in Santa and the magic of Christmas.  Thanks to that, the magic will never truly leave our home and I’m so glad for that tradition.   I love watching her eyes when she discovers that Santa came again.

Last year, for the first time, Rob got up in the middle of the night and raided his stocking.  He was always the one who went to sleep and had to be pulled from bed the next morning to open presents.  I can’t wait to see what he does this year.  Casey is always too excited to sleep on Christmas Eve and as a result, after she opens presents, she goes back to bed.  She used to say “Get up in da dark” for days before Christmas, while I reminded her to get up in the light!

Another Christmas Eve tradition for our family is a long drive to look at decorated houses around town.  Casey has already asked about this year and giggled when I told her we would go.  When they were little, I would give them  baths and bundle into new Christmas pajamas before we left, but that doesn’t happen anymore.  They both enjoy the quiet ride to see the lights and it helps relax them before trying to sleep.

Every year, I try to take them somewhere special to see Christmas lights.  Casey still wants to talk to Santa, but I have to be careful as Rob is likely to pull his beard off to see who is really there – or completely ignore him.  He has never been happy to see Santa or sit on his lap.  I may have one picture of him near Santa, but that’s ok.  I know many families really want pictures with Santa but it’s never been a real concern for me.

Last week, we drove to a nearby county to see their decorated courthouse.  I thought Rob might like it, but that it wouldn’t interest him for long.  I knew Casey and Mandy would like it.  I was so surprised!  Rob giggled and laughed the whole time we were there.  I took several pictures of the three of them together and in each they are laughing together.  Seeing that was truly this mom’s Christmas joy!  The only thing that would have made it better was if Cory had been able to be there, too.

Your favorite traditions may have to be altered a little for your family but that’s ok.  If your little one wants a tree decorated with socks (how Casey would love that!) or with blocks, who cares?  Decorate how you want to and enjoy the smiles and giggles.  You may have to hide special items or put them up high to protect them, but that’s ok.  I remember one year that the kids decorated the family tree and all of the ornaments were from their height down.  While I laughed about it and how cute it was, a friend commented that I needed to “fix” it.  Why?  The kids worked hard on it and were so pleased with how it looked.  Why in the world would I want to change that?

Traditions are wonderful additions to family life, but they are supposed to add to the love and fun, not cause more stress.  Stop worrying about what other people might think of pumpkin shaped cookies at Christmas and think about how much fun you had making the cookies with your family.  If church isn’t an option, you can still read the story of Jesus’s birth and play with a nativity set.  We are so used to adapting our lives to autism – I don’t know why so many people forget that at Christmas.

Autism isn’t going to take a break for the holidays (But how cool would that be?  Maybe… or maybe not) so why would you try to force a “normal” Christmas?  And how many families have those perfect holidays, anyway?  Personally, I think “Christmas Vacation” is probably a good idea of how many holidays are – we just don’t inside other houses.  We don’t see how other families have to adjust their ideas also.

The only thing you should worry about is a happy day for your family.  Never compare your holiday to anyone else’s and don’t assume everyone else has it all together.  This time of year is busy for everyone and really, you have the perfect opportunity to find the peace and joy everyone wants at Christmas.

No one expects autism families to attend every event or join in every party.  We have the perfect excuse to say, “No, thank you.  We appreciate the invitation, though.”  We can stay home and create our own traditions.  How about piling blankets in the living room and watching Christmas cartoons together?  Create ornaments every year or take a walk in the snow.  Stop and take  a deep breath.  Find the joy of the season in your own unique ways.  I’d love to hear what traditions your family enjoys!  I’m always looking for new ideas!

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Autism and the “Can’t be Found” Christmas Spirit

Autism and the Can't be Found Christmas Spirit

Last week was not a good one for me.  Several weeks ago, my beloved chocolate lab was diagnosed with lymphoma.  On Monday, I had to say good-bye to Eve.  Many think dogs are just pets, but for me, Eve was the one who helped me through some very dark days and was my strength through tough times with autism.

Casey and Rob didn’t say much about Eve being gone.  After all, she was in Heaven with Bingo and Molly – why should they be sad?  She was happy and pain-free.  So I did my best to hide my tears from them and pretend that I was ok, when inside, all I could do was think about her and how many times she had cuddled me when the world was just too hard.

I love Christmas and all that goes with it.  It is tradition in our house to start decorating for Christmas the day after Thanksgiving.  Since I’ve worked in a school for many years, I usually had a five day break and plenty of time to get started.  I had told Casey that we would put her tree up in her room on that day.

Of course, with her never-forget mind, she reminded me about the tree.  I was tired and really not in the Christmas spirit at all.  I told her she needed to put all of her laundry away before we could put up the tree, thinking she would never actually do it.  She ran to her room and came back giggling about her tree.  I didn’t believe she had cleaned her room, but it was done and her eyes were twinkling with excitement about having a “big” tree in her room.

So, still feeling no Christmas spirit at all, I told her she had to help carry the tree upstairs.  She always says no when I ask her to do something – usually as she is going to do it – but today, as I’m thinking about hitting the chair and curling up with a blanket, she runs to the basement and waits for me to show her which boxes.

It didn’t take long to get the tree set up and she wanted to do everything herself.  I sat on her bed and untangled ornaments for her.  She sang and danced back and forth as she carefully placed ornaments in just the right spot.  Soon, she had me giggling, too, as it was impossible not to laugh at her excitement.

She picked up an ornament she had made in church and talked about Jesus’s birthday and having a cake on Christmas Day.  (She always mentioned everyone in Heaven that would be at Jesus’s real birthday party!)  She laughed when she said “Eve party hat?”  I laughed, too, because Eve never liked things on her head.

In just the few minutes it took her to decorate the tree, she had helped me find my Christmas spirit.  I thought about how Eve loved tearing up wrapping paper every Christmas morning.  She always had presents, too, but she loved waiting for the big pile of paper to dive into.

I sat and watched Casey as she leaned close to the tree and backed away giggling.  I wondered what she saw that made her giggle so much.  I knew she was looking at herself in a blue bulb, so maybe she thought she looked like Cookie Monster.  And I thought about the myth that people with autism don’t feel emotions.

It’s true that we only put up her tree because it was what we were supposed to do on the day after Thanksgiving, but in that half hour, she reminded me that Christmas is a time to feel blessed.  She didn’t have to say many words – she just had to be herself and let her own Christmas spirit shine out.

I feel sorry for the people who don’t really look at our kids – the ones that dismiss them because they have autism.  Too many people believe our kids have no emotions, no dreams, no way to communicate and it’s such a loss for them.  I know how difficult it is sometimes to see beyond meltdowns or sensory issues, but I bet you can see a sparkle in their eyes when they are teasing you.

So, I’m urging each of you to let your child (no matter how old they are!) to lead you to your Christmas spirit when the holiday season becomes too stressful with shopping, finances, extra social activities and everything else we need to do this time of year.  Let them lead you to peace, joy and happiness.

Maybe we should all try to follow their lead.  For the most part, our kids want simple lives – and wouldn’t we be happier if we simplified our lives?