Tag: autism mom

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Autism Times Two – Who is Easier?

Autism Times Two - Who is Easier?

Last week, someone wondered whether Casey or Rob was easier to live with.  As if autism could be classified into easy or difficult!  But, the question did  make me think  – and here’s the answer.  All three kids had their quirks growing up that made me want to pull my hair out at times!  None of them were more difficult than the others – just different.

When they were little, Casey had more behaviors than Rob did.  Her  meltdowns were terrible to see and to live with.  Now, I know that she was having major sensory issues and that she couldn’t handle changes in her routine easily.  At the time, I just wanted someone to help her – or give us all ear plugs.  Casey also liked to dart away when we went places.  She even left the school playground a few times.

They were both a challenge to keep safe.  Neither had fears of anything – heights, water, streets – who cares?  Nothing can hurt them, right?  He didn’t run away as much in stores because he wanted to ride in the carts for much longer than he should have.  He simply felt safer in them – his sensory issues were beginning to show up.  I remember a day in Wal-Mart when two boys kept staring at him and making comments.  Their mom didn’t hear them, but I did.

Unfortunately for those boys, I was not in a good mood.  It had been a rough few days with little sleep and I was not in a forgiving mood.  As we passed them in the aisle, one made another comment about the “big baby” in the cart and I lost it.  I said excuse me to the mom and then proceeded to tell those boys – so she could hear every word – just why he was in the cart.

I said he had autism and the lights and noises in the store were painful and scary to him.  And that he knew they were making fun of him and that was causing him even more pain and anxiety.  I told them if they wanted to grow up to be mean monsters, they were on the right track.  Their mom was so embarrassed that they had said anything.

I’ll give mom a lot of credit – she clearly stated she would not put up with that and made the boys apologize to both Rob and me.  Then she did, too.  She was nearly crying that her sons had acted that way.  I bet they didn’t anymore.

Anyway, I think Rob’s lack of behaviors were a big reason that he wasn’t diagnosed earlier than he was.  He was simply a thrill seeking, happy, quiet little guy.  He communicated his wants without saying a lot and went anywhere we wanted to go without fuss.

As they got older, Casey’s behaviors went away for the most part.  She learned that changes in her routine were not the end of the world (and calendars helped with that so much!) and that screaming didn’t help her feel better. (Not that she doesn’t still let out a scream once in a while, but thankfully, the full blown meltdowns are extremely rare…knock on wood!  🙂  )  She has always been more self-confident in herself.  She firmly believes she is who she is and if you don’t like it, tough.  She doesn’t seem to care about having friends.  She has us and that’s enough for her.

Rob, however, wants people to like him.  He wanted friends when he was little and thankfully, he had a great group of little boys who accepted him as he was and made sure he always had someone to play with at recess or someone to sit with at lunchtime.  He gets upset if he thinks someone is angry with him and his anxiety goes through the roof.

He doesn’t seem to care as much about having friends, now.  He knows who likes him and he’s happy with that.  He goes places with groups from the workshop and will tell me who is his friend from there.

Each of them have their own difficulties in life.  His anxiety and sensory issues (including weather changes) make it harder to take him new places or get him to try new things.  She is more demanding than he is and more likely to get upset if something doesn’t go the way she wants.  He rarely gets angry – she rarely gets her feelings hurt.

His sensory issues are harder on him than hers are on her.  She plugs her ears and is good to go.  He can’t eat certain textures without gagging, or wear certain  materials.  He gets hot easily – she is usually cold, eats almost anything and has more clothes than anyone needs.

It always amazes me what people will ask.  I’m here to spread awareness of autism and other special needs, but some questions are just crazy!  Would you ask someone with typical kids who was the most difficult of their children?  Probably not, but because they have autism, it’s okay to ask.  I’m actually okay with the question – it just struck me funny for one simple reason.

When I get asked about living with autism or their behaviors – anything like that – I always have to laugh to myself.  I would much prefer my life to many others!   I’m excited when my kids talk back to me (they talked appropriately – YES!).  When my kids have behaviors, it’s not them being brats (like so many “typical” kids!), it’s sensory issues.  (usually – there are times when they are just being turkeys!  🙂  )  I know where my kids are – no late night worrying (well, not about where they are – there are always late night worries!), no driving or insurance.

Autism doesn’t make one child more difficult than another.  Just like everyone else, they all have their own issues to deal with (sometimes, I think people forget that everyone has issues – not just those with special needs!) and some issues are more demanding than others.  Casey, Mandy and Rob all brought equal amounts of stress and love, sleepless nights and happy hugs, smiles and tears to our family.  They are all amazing and I wouldn’t want to change any of them!

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How Autism Alters Birthday Expectations

How Autism Alters Birthday Expectations

In just a few days, Rob will be 26. Casey is more excited about it than he is – at least, so far. She wants cake and ice cream and balloons and presents. He wants to eat Long John Silvers for supper.

Rob doesn’t like being the center of attention. He likes opening presents, but won’t tell anyone what he would like. It’s almost like he thinks the presents just appear. He knows who gives him what, as the kids are expected to write thank you notes after receiving gifts (yes, probably an old-fashioned idea, but I insist and they do them without any fuss.) I help them by writing “Dear — ” and then they do the rest. Usually very short and sweet, but I think it’s important.

Anyway – he wants “presents” for his birthday. Any suggestions I give him as to what he might like, he just repeats. I struggle every holiday and birthday because I desperately want to give him things he wants. When he was little, it was easier – blocks, trucks and anything with ABC on it. Dr. Seuss books, Power Rangers, Wizard of Oz – all sure bets. Now, it’s harder. He used to want CDs or DVDs but he watches/listens to everything on his iPad now.

While he doesn’t completely understand gift cards, he does know that when he gets one with the golden arches on it, he gets to go to McDonald’s. And finally, a year or two ago, he understood the idea of money and being able to go buy what he wants. And I’m letting go of the idea of spending money just so he has something fantastic (to my way of thinking anyway) to open.

Because a week or so ago, I was looking through my scrapbook of the kids’ birthdays and I found his 10th birthday. You can sense my excitement over that day even now, as that was the first year he asked for a party! We had always had his cousins come over, but he never cared at all. He would open the presents, blow out candles on a cake he didn’t want and hide in his room.

But – that year! He wanted hamburgers and he wanted kids to come and swim with him. And we went all out for it! He had his cookout and they went swimming (until a storm blew in!). He opened presents and they went swimming again. Every picture of him that year shows a big smile on his face. He was playing with the kids (true, they were all in the pool together, not really one on one but he was having fun!).

I noticed something else about that year. I had listed his favorite presents – 10 packs of crayons and a jar of dill pickles. So simple, yet he was excited enough to hold them up to the camera so I could take a picture.

Every time it comes to buying presents for him, I tell myself (and I wrote it in this blog at Christmas!) that I’m going to buy stuff he likes. And I do, but I feel guilty if I don’t spend as much on him as I do Casey, Mandy and Cory. I know he doesn’t know the difference, but I do. I can tell myself a hundred times to let it go, but it bothers me.

This year, I bought him a few more street signs for his room, some clay to cut up and an ABC banner to hang up or rip up (it was only $1!) And I’m going to give him money to go to Walmart and pick out what he likes. Maybe a huge jar of pickles (I hope he’ll share!) or 15 boxes of crayons (which he doesn’t use anymore – his stockpile numbers close to 1,000 crayons now) or maybe he’ll buy packs of paper to rip up. It will be his choice, not mine.

Birthdays are a big deal to me.  I like making the birthday person feel special on their day and autism has an affect on that expectation.  I want to celebrate and buy the perfect gift.  I want to make the day awesome.  Casey is much easier to do that for – she loves everything about birthdays.  Rob, not so much.  He enjoys presents, but doesn’t appear to care what he gets.  He wants to pick where we eat supper at.  He wants Mandy and Cory and Grandma and Grandpa to come.  And he wants to disappear into his room as soon as possible.

I worry that he really wants something, but doesn’t have the ability to tell me.  Then I worry that he’ll be disappointed when he doesn’t get that special gift.  (Yeah – I worry too much at times!  🙁  )  Rob will know it’s his birthday because I will wake him up singing, but otherwise, he’ll go to Hopewell and be thinking about supper.   He won’t tell me his birthday or how old he is.  (He looks at Casey and waits for her to answer for him!)

So birthdays are another part of life that gets altered because of autism.  I have to let go of the idea I have of a perfect day for him and make it his idea of a perfect day.  It won’t match mine, maybe, but if it makes him feel special and happy, then that’s what we’ll do.

Happy Birthday, Robbie-Dodger – my little boy in a grown-up body, who still loves his Power Rangers and the Wizard of Oz, who loves ripping paper and magazines, who loves french fries and tacos and thinks his sisters (and Cory!) are the coolest people in the world.  I promise to make your day just what you want!   🙂  🙂

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Back to School with Autism

Back to School with Autism

This is the first year – ever – that Rob hasn’t asked about going to school.  He graduated in 2011, but every August, he asked about River View and Mrs. Shrimplin and Mrs. Barb and so many others.  At first, I thought he just missed the routine, but then it became more of a “I don’t have to go, right?” question.

He and Casey both still talk about the teachers and aides that they had.  They name them off by year (and to be honest, they remember more than I do, as they mention teachers that were at the school that they liked) and Casey will tell me their birthdays – and the birthdays of some of the kids that were in her classes.  Rob had a group of buddies in elementary school that watched out for him and helped him when he needed it.  He still talks about them and once in a while, will look at a picture book to see those boys.

I recently saw a post –  brace yourself – where an autism mom admitted she could not wait for school to start!  Can  you imagine?  Someone admitting that she needed a break from her child, even with the stress of school days?  So many parents commented that they dreaded school and would rather be with their child all of the time.

While I do understand that idea (after all, if your child is with you, you don’t have to worry about them – they are safe with someone who loves them!), I am all for getting a break when you can.  We had a rough couple of years of school and I was ready to say the heck with it and home school the kids.  I was beyond sick of paperwork, of worthless professionals, of day to day crap of trying to explain autism to people who didn’t seem to give a damn.  The hardest part was seeing the teachers that we loved and respected having an even harder time.  It just wasn’t worth it.

Then I really thought about it.  I needed those few hours every day to breathe.  I needed to be able to sit down and not be constantly on watch.  I was fed up with issues at school, but I knew, deep down, that I couldn’t teach the kids.  I mean, I could have taught them, but I would have been even more exhausted than I was.  I knew that pulling them out of school (and that includes Mandy!) was always an option to fall back on.

So, let me be a parent that says “YAYYY!  It’s time for school!”  Did I miss them?  Yep.  Was I happy when they had days off?  Yes.  Did we have fun things to do?  Yes.  But – I was able to plan those fun, crafty, lazy days because I wasn’t sleep-deprived and stressed.  If you are excited to watch for the school bus, admit it!  Honestly, I think most parents are, but you aren’t supposed to admit it to anyone.  Ugh – admit it to me!  I won’t tell a soul that you are ready for a morning nap and to eat a quiet lunch.

I know how stressful school is for you when you have a special needs child.  Worrying about their safety and whether they are happy is constantly in your mind.  But I also know you can handle the stress a little better when you have  a break from autism for a few hours.  Don’t feel guilty.  We all put too much guilt on ourselves (I do this – I feel like I haven’t done nearly enough with the kids this summer – even though we’ve done what they wanted and then some!).  Summers just fly by.

Try to reduce some of your stress by meeting your child’s teacher as soon as possible.  Bring pictures and tell the teacher your concerns.  Or make a list of “quirks” your child has so the teacher is ready.  Make sure you share as many good things as negative!  Even on the toughest days, there is some tiny little thing to be happy about.

Ask the teacher the best way to communicate.  Email?  Quick texts?  Be sure they understand that you want open communication – that you want to know what’s happening with your child.  Some teachers worry about telling negative things, and I understand that, but if you don’t know about behaviors, how can you devise a plan to deal with them?  And, the sooner you know, the better.

Be honest with the teacher.  If there is a stressful event at home (a death or a divorce, etc), tell the school.  More than likely, your child will be affected and they can’t help if they don’t know about the problem.  You don’t have to share private details – just the simple fact that something is going on at home.

Be respectful!  This goes both ways – teachers need to respect the parents’ wishes as much as parents need to respect teachers.  Don’t talk negatively about the teacher/parent when the child may overhear (and remember, many people with autism have amazing hearing!)

If you feel there is a problem, talk to the teacher/parent!  Don’t wait until the issue is beyond fixing!  If you simply can’t agree with the teacher/parent, it may be time to bring in the principal or someone else who can mediate the problem.  Remember that, most of the time, you both want what is best for the child!  Work together to find what works.

I hope each of you finds wonderful teachers and new friends for your children as you start this new school year.  Enjoy that small break from autism!

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Autism Parents – Twists, Turns and Hang on Tight

Autism Parents - Twists, Turns and Hang on Tight

Earlier this week, I finally got to spend the morning on the lake with my dad.  As much as I enjoy going, it seems to only happen once a summer, so it’s always a special treat.  He fishes and I sit and do nothing but relax.  We were heading back to the boat ramp when I saw this tree and realized it was the perfect picture for every autism parent (or any special needs parent, really!).

Look at the base of it.  The roots are barely hanging onto the bank.  Only the tips are buried – the rest is exposed for all to see.  And I’ve felt like that many times, haven’t you?   Like I’m only holding on by my fingertips and at any minute, something is going to come along and knock me off my careful plan.  Or we are out somewhere and people feel the urge to stare or point – and I feel like our lives are completely exposed for any stranger to look at us and judge me as an autism parent.

Not that I don’t stare right back – or make a comment to rude people, but sometimes, I’ve just been so tired, that those comments and stares are just too much and I sat and cried.  We truly do live lives that are open for all to see – whether it’s teachers, doctors, therapists – and so many others.  Because we need their help, we have very little privacy at times.  When your child has a behavior at school, other parents can know about it before you do at times.  And it’s sad and depressing and so exhausting.  Been there, done that.  And I expect that it will happen again.

Although it might seem contradictory, since I write this blog, I am a private person with much of our lives.  I don’t like strangers knowing details about us when I don’t think it’s any of their business.  I want to share as much as I can to help others through tough times – to share hope and bring smiles and laughter.  To remind everyone that dark days always end and life does get easier.  But some of our lives are just that – our lives.  I have several autism parents that message me questions and I’m happy to answer those messages, but not publicly for the world to know.

So I sat in the boat and looked at this tree and noticed the trunk.  Look how it’s bent at a right angle and has other bends in it.  Yet, it’s still green and leafy and reaching for the beautiful blue sky.  Just like autism parents!  We follow our carefully made plans and then make an abrupt right turn when we hit a wall.  We step back, think about our options and try again.  Sometimes, we don’t have to make such a sudden stop as that right angel, but just minor detours in plans – like the bends in the tree.

I don’t even want to think about how many perfect plans that were laid out for the kids and they just blew up in my face.  Because, of course, the best laid plans assumes that your child will eventually follow that plan – the plan they probably had little to no say in.  And they have their own opinions – imagine that!  🙂   They want things a certain way – or don’t like what we think will be awesome for them.  And even non-verbal people communicate every day – you just have to learn to listen carefully.  Or, if you have a child like Casey was, you learn to get out of the way when the screaming and headbanging start.

She couldn’t tell me why she didn’t like something – but she sure let me know she didn’t!   And that’s fine.  If I didn’t like something and was forced to be near it, I would scream, too, if I couldn’t communicate any other way.  And I’m sure you would, too – even those of you who are shaking your heads that you “would never.”  Yeah, right – step into your child’s shoes and say that.

Rob didn’t scream – he just avoided things.  And he could avoid in ways you haven’t even dreamed of.  It’s funny, now, but at the time, I thought I would pull my hair out.  He could figure out ways to do what he wanted faster than I could think of everything he might do.  And he still can, at times.  But now, I know to watch for his cute little smirk and the sparkles in his eyes and know he’s up to something.

So when you are having a bad day as an autism parent, keep the picture of this tree in mind.  Hold on tightly, bend when you meet an obstacle, keep blooming, keep reaching for the sky and your dreams!  You and your child will get there.  It may not be the dreams you once had – but they will be awesome, beautiful dreams, just the same.  Look how far we’ve come if you need inspiration!  And if we can do it, anyone can.  Casey and Rob are happy with their lives and isn’t that truly what every parent wants for their children?

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Typical Week of Autism – What’s Next?

Typical Week of Autism - Whats Next?

This was a typical week of autism.  High highs and some lower days, too, but not super bad low so we’ll count it a good overall week.

Monday, we finally got to visit a state park about two hours from us.  Casey has been asking to go since last summer (it was one of those, yes, we’ll go and then ran out of summer days!) and she was thrilled.  However, despite being happy to  go, I was worried.  She had had major sinus issues all weekend and I had even told Tracie we would probably be at the doctor for a sinus infection instead of hiking.

She shocked me, though, and seemed better Monday morning.  She got out of breath a few times because her nose was stuffy but she laughed and giggled all day.  We had a picnic lunch before we began our hike and they both enjoyed that.

We visited Old Man’s Cave in Hocking Hills State Park.  The caves aren’t actually caves, but giant rock overhangs that people used to live under many, many years ago.  It’s so pretty and the trails are easy to follow.  Rob enjoyed looking at the creek and the little waterfalls – until we got to the “cave.”

He was walking with Tracie and seemed okay walking in at first, but he quickly decided he wasn’t staying.  There were a lot of people (but not super-crowded) and he turned to go back up the trail.  Nothing we could say would convince him to walk farther to see a bigger waterfall.  It wasn’t a big deal, so we turned around.

He stayed well ahead of us to make sure we wouldn’t try to make him go back and it wasn’t till we were back near the car that we both had an idea of what the problem might have been.  It hit me that he is severely claustrophobic – maybe the overhang (which was barely enough clearance for him to walk) was just too close for him.  Tracie remembered it was supposed to rain/storm later and we knew either reason could be right.  Or he was hot.  Or he had to go to the bathroom.  Or… or… or….  who knows?

Because it was so hot, we decided to drive to different parts of the park instead of hiking the entire path (several miles).  He jumped out of the car at the next place and happily started the hike.  Even when we had to walk down many flights of steps, he was fine.  He looked around and laughed.  Again, it wasn’t until we got close to another overhang that he got anxious.  He stood still (sort of!)  for one picture and then took off up the path again.  We had to keep telling him to slow down, as this was rocky and we were both afraid he would fall.

There was another spot nearby that had a waterfall and the hike wasn’t too long.  As soon as we got into the woods and looked down at the pool of water and the falls,  both kids got big smiles on their faces.  When we finally got down to it, there were several people wading in the water (it was clearly marked no wading or swimming…. but…  🙂  )   So I took my shoes off and asked Casey if she wanted to go wading.  She immediately took hers off.  I knew Rob would never go wading, but I had to try.

And he sat down, yanked his shoes and socks off and came right to me!   To say I was shocked is an understatement!  He never goes wading – ever.  I don’t remember the last time I saw him do it – not since he was little, I’m sure.  He walked through the cool water, found a big rock to sit on that he could still keep his feet in the water and he let the waterfall hypnotize him.  It was the best part of the day!  He looked so happy and relaxed!

Unfortunately, after our fun day of hiking, Rob and I both woke up with stuffy noses and coughs.  I thought it was allergies, but then we both had no energy.  He asked for the doctor one night, but then changed his mind.  So we took it easy all week – coughing and resting.  It’s just way too early to be dealing with this stuff!

We also had to deal with another issue that had both kids anxious and upset.  While I do share a lot on this autism blog, there are things that I believe are too private to the kids – or that may make the problem worse if I write about it.  It’s nothing I can change, fix or fight about – nor can I explain it to them to make them understand what is going on.  So besides not feeling good, they are both upset about this problem.  A low point of the week – trying to explain that they are not the problem.  Rob takes things like this very personally and is having a harder time than Casey.  She just keeps asking.

On Friday, they were supposed to go swimming with a group of friends from their workshop.  I had a feeling it wouldn’t go well, as this was the pool that Rob got stung at last year and he never forgets things like that.  But,  he wanted to go and I want him to try whatever he’s comfortable with.  I told staff that I would be available all day so I could go get him if needed.  He wasn’t there long before the anxiety got to be too much.  So I brought him home and wondered why exactly he was anxious.

Was it the weather?  (more storms coming!)  The bee sting?   The fact there aren’t any fountains to stand under in the pool?  Not feeling good?  The stress he was already feeling?  As a mom (thank you, Yvette!) commented on our Facebook page (and I LOVE this – it’s perfect for autism!) it’s like the Tootsie Roll commercial – how many licks does it take?  The world may never know!  I’ll never know why and he can’t tell me.  And I’m left thinking that sometimes, autism just isn’t fun for any of us.

So this week has been up and down with autism.  I am so proud of the things they accomplished this week!  I can’t imagine having a head full of thoughts and not being able to express those thoughts easily.  But every day, they keep trying with smiles and giggles.  If only we could all face our troubles like this!

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Autism and Treatments – How to Decide What to Try

Autism Treatments

I was asked recently if I had considered trying marijuana oil for my kids – just to see if it would help their autism.  Truly, I hadn’t even thought about it.  I know it can help so many medical issues (and I do believe the people that need it should be able to get it) but it never occurred to me to give it to the kids to help with their autism.

I don’t know if any studies have been done about the use of medical marijuana for autism and I haven’t talked to any parents who have tried it.  I do follow a few Facebook pages where parents have tried and they say it has helped their child – maybe not with the “autism” but with the affects of it, such as anxiety and trouble sleeping.  And really, that’s what you want a treatment to do – help your child.  Autism can’t be cured, but if you can help your child sleep or relieve some of the symptoms, I’d call it a success.

So that brings up a question – how far should parents go to try a new treatment for their child?

I’m not an expert on this – I firmly believe that every family  needs to make their own decisions about treatments.  They need to talk to their child’s doctor – and maybe a few other doctors.  Every person with autism is different and what works for one won’t necessarily work for another.  I know this first hand!

Both Casey and Rob had standard therapies – speech and occupational therapy.  They had sessions all through school and I took them to private speech therapy.  Rob did better with the traditional speech therapy than Casey did, but it helped them both tremendously.  They both have excellent fine motor skills in some ways (drawing and dressing themselves, for example) but only Casey can tie her shoes.  After 20 years of trying to teach Rob, I decided it wasn’t worth my time anymore.  He had no interest and his fingers just wouldn’t do what they needed to do.  (I knotted his shoe strings and he just slipped them on.  I purchased no-tie laces for him last month and they seem to work well).

When Casey was 5, Auditory Integration Therapy was the rage.  Anyone with issues with their hearing was trying it.  And I wanted Casey to have it desperately.  Basically, the child had to wear headphones for 30 minutes twice a day and listen to music that was altered so their ears would lose the sensitivity and allow them to hear better.  It was only performed in a few places across the country, but luckily, there was an office only three hours from home.

It was also expensive.  And insurance, of course, would not consider covering it.  Along with the therapy itself, we would have to pay for two weeks in a hotel (the therapy was 5 days a week, twice a day, for two weeks) plus food.  But, I just knew it would help her.  My gut told me it would.

I discussed it with Casey’s preschool teachers and they felt it was worth a try, too, as did her doctors.  The cost was still a problem.  I had pretty much decided that I would just have to start saving pennies until we had enough when we got an amazing surprise.  Casey’s teachers, other families in her class, and my family donated money for her to go.  The appreciation I felt can never be expressed – I hope each person knows what that meant to me.

My mom, the three kids (Casey was 5, Mandy 2 and Rob just a baby) and I spent two weeks in Cincinnati.  Mom took her to one session each day and I took her to the other and it wasn’t fun.  The first few days, she screamed and fought the whole time (we had been warned this might happen – and she hated sitting still that long, anyway).  But, we stuck it out.  And that weekend, after 10 sessions, I asked her what she wanted for breakfast – and she said “doughnut.”

I cried, my parents cried (Dad came down to spend the weekend with us) and she got a doughnut.  I probably would have given her a dozen, if she would say it again!  I counted AIT a success!

When Rob started showing signs of autism, I thought about AIT for him, but dismissed it.  I’m still not sure why, since it helped Casey, but they were so different.  He didn’t have the same issues she did and I never gave that therapy another thought for him.

When casein and gluten free diets became popular, I knew it was something I  needed to try with Rob.  His doctor told me different signs that someone with an allergy to either might show and Rob did have several.  Casey didn’t.  Rob has always had digestion problems, while Casey doesn’t.  So we tried it for several weeks, but unfortunately, we didn’t see any improvements with him.  Since then, he’s lost several symptoms of those allergies, but continues to have digestion issues.

Secretin was another popular treatment for people with autism with digestive issues.  Rob’s doctor actually contacted me about it.  For a long time, it wasn’t available in the US, but when it was, their doctor wanted to do his own study and asked Rob to be part of it.   He did have improvements with his digestive issues.  (I think a lot of symptoms of autism may be the result of digestive problems).

For each therapy I tried with the kids, I did research.  I asked their doctors and I talked to other parents who had tried it.  But – always, always, I followed my own instincts.  Even if someone had amazing results from something, if I didn’t feel right about it, we didn’t do it.  Have I made mistakes?  I’m sure I have, but I can’t change that now.

After you do research and you talk to other parents, you need to ask yourself if you can afford it and how you truly feel about it.  Don’t do something because every tells you it’s miracle.  Do it because YOU think it’s a good idea.

And always ask yourself about the risks.  If there are any, you need to think even harder about the risks/rewards.  Are the possible benefits worth it?  I always think – first do no harm.  If there are no risks, why no give it a try?  The worst that can happen is you waste some time and money.

When you see a new treatment, don’t believe the instant hype.  Let the results speak for themselves.  Talk to your doctor – don’t believe what you read on the internet.  Don’t jump on the bandwagon until you have time to really find out what the treatment is and possible dangers.  And follow your own instincts!

 

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Random Thoughts from an Autism Mom

Random Thoughts from an Autism Mom

Usually, I have a pretty good idea of what I want to write about a few days before I sit down to write this blog.  This week has been so crazy that I’ve jumped from idea to idea and none are working.  So, for something different, I thought I would share some thoughts I had about autism and our lives.

Autism thought #1.  Full moons are beautiful.  I love sitting on the porch steps and looking up at this perfect circle and imaging all sorts of thoughts.  I also hate full moons!  I dread them with a passion because I never know if this will be a good moon or a bad one.  This one was not good.  We felt the affects all week and while they are subsiding a little, I can still hear/see the anxiety in both kids.  Rob has been loud and anxious most days and Casey is on edge.  Thankfully, we’ve made it this far with no major behavior issues.

Autism thought #2.   Rob is still surprising me nearly every day with a new skill or ability to try something new.  He is enjoying more activities at the workshop and has more patience to be in new places.  Today, we went to my aunt’s house to pick up several things and he wandered around her yard like he had been there a million times.  He never sang his stress song and he even helped load the bricks into the car. (He did, however, freeze at the sight of a huge cricket on the brick he was holding.  Thank Mandy for that!  🙂 )

Autism thought #3.  I don’t understand selfish people.  I don’t understand how people can put their own wants above their child’s needs – especially a child who doesn’t understand why things are happening the way they are.  Selfish people are one of my biggest pet peeves and I’m getting irritated just thinking about it.  How can parents explain things to children they barely understand themselves?

Autism thought #4.  I wish the kids were able to tell me what they are feeling.  Maybe I’m getting too worried about selfish people when Casey and Rob really don’t care.  And Rob was rubbing at his ear again the other day – does he have another ear infection coming on?  (he had one right before camp and he was able to tell me it hurt and he needed Dr. Myers.)  Casey is so on edge – if I knew what she was feeling, maybe I could help!

Autism thought #5.  I wish – and I mean, really, really wish – that Casey’s memory wasn’t as good as it is.  She can remember things from before she was a year old. (When asked what happened on March 22, 1988, she said “got born, got cold, cried.”) She remembers what day we do things and used to expect the same thing to happen the following year.  For a long time, she got really upset if we didn’t follow the same dates, but now, she just reminds me.  Over and over and over.  On this day last year, we went to a state park near us and went swimming.  So, she was insisting we do that today, too.  Luckily, going to my aunt’s house made her happy.  But I know I’ll be hearing “Salt Fork, Salt Fork” many times until we finally make the trip.

Autism thought #6.  How weird is it that I’m thinking of finding someone I know, but the kids don’t to see if they will leave with a stranger?  This has been weighing on my mind a lot lately.  I hear of so many kids that are taken and it makes me sick.  Several months ago, Casey and a group of friends were followed in our local Walmart and then to another store.  Luckily, the staff that was with them noticed and kept the girls together until another staff member got there.  (the men were driving a windowless van and left when the male staff arrived.)  It scares the hell out of me.  Most of me thinks they would ignore strangers, but what if that person said they had French fries?  or a coloring book?  I just want to know if I’m worrying too much.  I’m sure if a person tried to grab them, the fight would be on, but if they just talked to them, Casey and Rob might walk with them.  (Not that they are ever alone in a store, but if one wanders off while I’m helping the other?)

Autism thought #7.  I feel guilty.  I don’t think I do enough with the kids at times.  While most of the time, I know this isn’t true, I wonder.  Casey would love to travel more, but Rob wouldn’t.  The effort to balance both their needs is exhausting at times and adds more guilt that I really don’t need to feel.

Autism thought #8.  I’m tired.  Lately, I’ve had a hard time relaxing – I always feel like I need to be doing something.  I have a list of things I wanted to get finished this summer and I feel like I’m running out of time.  I’ve missed yoga and working out just to work on another project.  Late last week, I decided enough was enough.  I left everything alone on the list and worked out.  Then I did yoga – and I felt amazing.  Relaxed.  I really need to stop running around and feeling like I’m accomplishing nothing.  One thing at a time and no more trying to do a million things at once.

Autism thought #9.  Blue (our new black lab puppy) was a good choice.  She wants to play with the kids, but seems to understand they aren’t like me.  I took her to the kids’ workshop the other day, fully expecting her to be wild (she loves attention!) but I was surprised!  When some people pet her, she wiggled and was her usual self.  When others, who had more physical issues, wanted to pet her, she lay still in my arms or stretched to lay her head on their arm or shoulder.  She sensed what they needed.

Have a wonderful, full-moon-less week!  🙂

 

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Home from Camp – Back to our Normal

Home from Camp - Back to Normal

Thank you, Camp Echoing Hills for another amazing week of camp for Casey and Rob.  While I’m still only hearing bits and pieces, from the smiles and giggles that accompany those few words, I’m sure they had fun.  Casey has already mentioned that camp is in July 2019 and wants to write it on a calendar. (Luckily, we don’t have next year’s calendar, yet!)

Casey sang in the talent show and one of the staff was sweet enough to record it for me so I could enjoy it, too.  (The fact that Rob is asleep on the floor behind her just adds to my love of the video!  🙂  )  She chose to sing Baby Blue – the same song she sang at the other talent show a few months ago.  I wish she would sing more – she truly has a beautiful voice.

Rob told me the pool was the best and he got wet.  He said he saw a cross and he saw a fish.  He said Donald is his friend (and another name, but he’s saying it so quietly, I can’t quite tell who he is talking about).   Casey said Bert liked camp and that he snored (for those who don’t know, Bert is a stuffed toy from Sesame Street!)  She went swimming and she went fishing.  When asked what she caught, she said a hot dog.  I’m a little lost about that because she’s insistent that she caught one.  Maybe they use hot dog as bait?

Mandy was actually getting off work as I got there to pick them up, so they got to see her, too.  They were both waiting on the porch.  Casey’s eyes were twinkling and she came right to me for a hug and a sweet smile.  Rob was a little farther away and he let out one of his loud yells before he came to me.  (Maybe he didn’t want to leave, yet? 🙂  )  More likely, he was singing his storm song as the weather was crazy that day.  Either way, I got my super sweet hug from him as soon as we got home.

They were both surprised when we got home.  I had given both rooms good cleanings when I didn’t have them to help me decide what to keep and what to throw away.  Casey laughed and laughed that her Sesame Street stuffed toys had gotten baths.  She had to arrange them perfectly – apparently, they go in a special way that I never thought to look at before I took them off the shelves.

Rob was concerned because I threw away a bunch of his magazines.  I really try to not throw anything of theirs away without talking to them first, but he had too many.  There were two stacks and each stack was close to 5′ high.  One fell the night before they went to camp and we talked then that he needed to get rid of some before they fell and hurt him.  Once I gave him some card stock to rip up, he was fine.  I still felt guilty, though – even knowing it needed to be done.

My week didn’t turn out quite like I had hoped.  Every thing I tried to do seemed to take four times as long and nothing went right.  The cans of paint for the living room didn’t match and the floor wouldn’t go back together.  I was close to tears by Monday evening and ended up having to make another trip to the home improvement store to have them remix the paint and buy a new floor.

Believe it or not, even the third can of paint didn’t match. (Only someone as lucky as me would take the “mistake” can back to be matched!)  Still, after bumps, bruises and a few tears, the living room was finished.  I still don’t have everything put back or things on the walls, but at least we can sit and I didn’t bring the kids home to everything piled in the dining room!  Rob would have really been flapping at that, while Casey would have giggled because I messed things up.

As much as they love camp, they are happy to be back home.  Rob has asked for Hopewell 15-20 times today, just making sure he gets to go tomorrow.  Casey has happily refolded her huge collection of socks for hours and both are happy to have their iPads back.  Card stock has been ripped and they got to spend time yesterday with Mandy and Cory.  Later today, they are going to Grandma Rose and Grandpa Mack’s house and they are both excited about that.

Life has returned to the normal we know.  It may not look anything like your normal, but that’s okay.  We do our own normal and it works for us.  I didn’t get as much free time as I had planned while they were gone, but at least they weren’t here for the mini-disasters!   🙂   And they had so much fun with their old, both new and old ones.  Thank you again, Camp Echoing Hills, for giving Casey and Rob a week of fun and for giving me a week to do what needed done without the added stress of autism!

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Summer Camp Time – How to Spend the Quiet Time

In about an hour, I’ll be loading the kids and all their stuff into the car and heading to Echoing Hills for their week of summer camp.  Casey can’t stop giggling, while Rob just keeps asking for camp.  And autism mom will be wondering what to do first.

They are packed and ready to go.  Casey finally made the biggest decision of the summer and chose Bert to go to camp with her.  She was trying to choose between Grover and an Elmo that haven’t gotten to go, yet, but apparently, at the last minute, she decided Bert needed to get away.  Her eyes were twinkling as she packed him carefully into her suitcase with a soft towel to keep him safe.

Last night, I heard Rob in his room, but I couldn’t tell what he was up to (and isn’t that scary, autism parents??).  When I went to check, I found him carefully packing his clothes.  He was folding each item neatly and putting all of his pants in one corner of his suitcase and his shirts in another.  I was so proud of him!  He even thought to put his towels and underwear in, too!

It was so cool to see him take such an active interest in packing.  Usually, he just makes sure I pack his favorite clothes (is it terrible that I wouldn’t mind if some of them didn’t come home?  🙂  )  But, if he lost something precious to him out there, I’m sure it would cause anxiety the next time, so I guess I’d just better hope it makes it home.   I’m sure he was packing for two reasons – because he was excited and to make sure I didn’t put any new clothes (God forbid!) in his suitcase.  He wants his comfy stuff and that’s all we packed.

I know lots of families take advantage of the kids being cared for for a week and take trips, but I like being home.  It sounds silly, but it’s so cool to not have to think about helping with baths/showers for a few nights and to watch TV at 8:00 if I want (that’s usually bath time)  I can go to bed at 9, if I want and not need to wait until they go to sleep.  I can have some junk food without them trying to sneak some, too.  (By the time I have a snack, they have already had theirs and I really watch how much they eat)

So, this week, I’m painting the living room and fixing the floor.  I could do it with them here, but it’s so much easier not having to worry about Rob’s anxiety when he comes home to discover Mom has destroyed the living room and moved everything.  I can take my time and not kill myself trying to get it done in one day while they are at the workshop.  Anyone else know what I mean?  🙂

As happy as they are to go, I have mixed feelings every time.  I know they are happy and having a great time and I do enjoy the break from autism, but they are such a part of me, that sometimes, it’s hard to separate us.  Maybe that doesn’t make much sense, but being a autism mom is me – the main thing in my life.  Not having someone to take care of is odd to me.  Enjoyable for a few days, but then I’m ready to get back to our routine.

The week will go so fast, but I’ll be one of the first moms to be at the camp Friday.  I can’t wait to see them.  I will wonder on the drive out if they will react like usual – Casey running for a hug with a big smile and Rob barely acknowledging me until we get home, when he leans his forehead to mine and smiles his sweet smile.

This year, I have a better understanding of what they will be doing doing the week.  I’ve volunteered at the camp on Mondays this summer and I’ve seen what they get to do.  I’ve always heard about it, of course, but seeing is even better.  And I’ve seen the same counselors week after week, happily helping whatever group is there that week.  (Each week is a different group – children, teens, young adults, older adults, autism, etc)  I’ve seen them go without their own lunch to follow a wanderer around the room to be sure that camper is safe.  I’ve seen them help campers eat and laugh at the silly jokes of others.

I’ve seen them dance silly dances because a camper asked them to.  I watched them carefully wipe faces of older adults and children.  I’ve seen them deal with difficult behaviors with a smile on their face and comfort a homesick camper.  To be honest, I could be a counselor for a week, but I’m not sure I could do it for the whole summer.  Maybe because care taking is a full time thing for me, while for the counselors it may not be.  Either way, the love I’ve seen makes this summer even easier to drop them off.

It also helps that Mandy works at the camp, now.  If there is an emergency, she can be with Casey or Rob in minutes.

So I’ve been thinking about what else I want to do during the week.  I’ve got my plans for the living room laid out, but I want some fun, too.  Walks with Blue and my friends, maybe?  Maybe I’ll read a book all day.   Maybe see a movie – or just watch a movie at home in my PJ’s.  Maybe I’ll go to the pool with my friend and not have to worry about watching the kids – can you imagine just sitting on a chair and catching some sun instead of chasing kids?

Maybe I’ll eat popcorn for supper one night and French fries for lunch.  Maybe I’ll sit in the porch swing for hours and watch the birds.  Maybe I’ll take a nap every day and stand in the shower for as long as I want.  Maybe I’ll get groceries.  Maybe I’ll write.  Maybe I’ll finally catch up on the list of stuff I wanted to get done this summer.  Maybe I’ll spend the week crafting.  Maybe I’ll go through their clothes and get rid of what doesn’t fit anymore.  Maybe I’ll just watch the ceiling fan blades go around.  The whole plan right now is to not have a plan.  Walks early in the morning and workouts in the afternoon, maybe?  Yoga on the patio as the morning warms up.  Who knows?

Casey is still giggling and saying camp every few minutes.  She apparently is worried that I’ll forget that today is the day!  The day she has been waiting for since last July.  They both love the weekend respites, but summer camp is extra special.  She is asking for certain counselors and talking about the talent show.  Rob is just watching me and waiting for me to say those magical words “It’s time to go!”

** Update – when I said it was time to go, Rob ran to car and refused to get out for a picture so Casey got as close as she could.  😊

When I was leaving, Casey barely looked up from her color by number, but Rob stood up, gave me a real hug and said “Wuv you, Mommy Jen” all before I said anything to him.  I had tears in my eyes – first time he has ever said that unless he’s repeating what I said to him.  💙💙💙💙

 

 

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Why do We Try to Make People with Autism Just Like Us?

People with autism

One of my favorite quotes from Dr. Seuss is “Why fit in when you were born to stand out?”  How true this is!  I have a t-shirt that says it and a sign in my bathroom.  And I try really hard to live it every day – both for myself and for the kids and their autism.

It really is a pet peeve of mine.  Think about it.  Do you ever multi-task when you are watching TV?  Maybe clean while listening to the show?  Does anyone harass you to look at the TV so they know you are paying attention to it?  Nope.  But people constantly try to force people with autism to look at them while they are talking.

Is it more polite to look at someone when they are talking?  Sure – but do you always do it?  Don’t you look around while they are talking?  And do you still hear what they said?  Exactly!  And people with autism have so many sensory issues that I’m sure they hear even more than we do when they aren’t looking.

Casey told me a long time ago that eyes move.  I couldn’t understand that and she couldn’t explain until I read an article about eyes and how they are almost constantly in motion – the pupils, the eye lids, etc.  Can you imagine trying to listen to someone while their eyes are bouncing around?  Of course, most people don’t notice the eye movements, but if you have autism and have hypersensitive sight (see too much), imagine the distraction that would be!

I stopped telling the kids to look at me years and years ago.  Even before I knew why they didn’t want to, it seemed pointless.  I knew they were listening to me, even if they weren’t looking.  (I learned that the hard way when Casey repeated a sentence in a very inappropriate place!  🙂  )

From a young age, children with autism are taught to act more like their peers.  I understand that, in some things, this is a great idea, why do we expect them to become mirror images of other children?  We don’t tell a typical child to eat something that will make him/her sick, but we try to convince a child with autism to try it.  We don’t force typical children to wear clothes that cause them pain, but we want kids with autism to try them.

When a typical child says “No” to trying something, often, we let it go and hope to try again later.  When a child with autism says/indicates no, we try “if, then” statements or “now, later.”  We try to reason with them.  Why?   Not this mom.  I say “are you sure?” and move on with life.  Cause to be honest, if someone tried to force me to eat certain foods, I would have a meltdown myself.

Don’t you have any foods you don’t like?  Fabrics that you don’t like to wear?  How about sounds that bother your ears?  You don’t have autism – you just have preferences.  Why can’t we accept those preferences in our kids?

Don’t misunderstand me.  There are times when Casey and Rob are not given choices about doing something.  They are not allowed to sleep at work (is anyone?).  They are not allowed to steal.  They have to take baths/showers and brush their teeth.  They have to help with chores around the house.  But – I don’t ask either of them to do something that would truly cause pain.  Rob would have a hard time using a sweeper because of the sound, while Casey puts a finger in her ear and does it.

Their autism is part of who they are.  They are adults and should be treated as such as much as possible.   I know some decisions are beyond their understanding (why can’t we stop for ice cream and a coke every time we go to Grandma and Grandpa’s house?) but I try to help them through the hard choices.

Rob gets hot easily, but refuses to wear shorts.  I tell him he would be cooler in shorts, but that’s a decision he can make without causing harm to himself.  Casey has a calendar in her head for when it’s okay to wear shorts and pants.  I have told her it’s okay to wear shorts in April if she is hot, but she doesn’t.  Again, that’s her choice and one that won’t harm her.

I don’t wear clothes that are uncomfortable to me so why would I expect them to?  Because “normal” people don’t wear the same 5 shirts all the time?  Who cares?  I mean, really – who cares?   Another favorite quote “Those who mind don’t matter and the ones that matter, don’t mind.”  Same thing – if something about my kids bothers you, stay away.  We don’t need your negativity in our lives.

I don’t eat certain foods.  Yes, I may be more inclined to try them (Sometimes!  🙂  ) but I don’t eat what I don’t like.  And yet, we try to tell people with autism they should eat more of a variety.  Why?  Yes, there are times to be concerned for health reasons, but if your child is healthy, why worry that chicken nuggets and applesauce is the only thing he/she will eat?  Rob went for years (he didn’t have so many problems eating when he was little – it started right before puberty) only eating the same things and refusing to try anything new.  Fifteen years later, he’s willing to try most things.  He doesn’t always like it, but he tries.  Score a huge point for us!

If I was in a crowd of people and the noise/smells/pushing was getting to me, I would leave.  But how many times are people with autism expected to sit and handle the same?  Especially when the noise and the smells are multiplied for them?  Wouldn’t you have a meltdown, too, if you were forced to be somewhere that was making you physically sick?

OK – I’m done ranting.  It’s just so irritating to hear people say we need to change people with autism to be more like us.  Why?  For the most part, people with autism don’t lie, cheat or judge people.  They tend to accept everyone who respects and accepts them – and we want to change them into “normal” people?  Nope, not happening.  WE should be more like them.

Treat others the way you want to be treated.  Just like a person with autism would.  (and yes, we may have to help them understand how to do that, but helping others is always a good plan!)