Tag: autism parents

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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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The Top 13 Things Having Children with Autism Taught Me

Top 13 Things Having Children with Autism Taught Me

Living with children with autism is a never-ending learning experience.  The therapy that worked today may not work tomorrow and the shirt that could easily be worn tomorrow might be one that couldn’t even be touched last week.  Parents are constantly on their toes for surprising new behaviors and we are always learning new things.  Here are the top thirteen things I’ve learned over the last 30 years as an autism mom.

  1. How to take out a toilet. Seriously, this is probably the one I’m most proud of.  Rob used to have a fascination with what floats and what just makes a large splash.  And since he knew he wasn’t supposed to play in the toilet, he would flush whatever he dropped so he wouldn’t get caught.  I can take out a toilet, remove the offending object (often match box cars) and reinstall the toilet in 15 minutes or so.  The only thing that ever stumped me was a plastic shot glass.  I was ready to permanently remove the toilet and insist they use a five gallon bucket over that one.
  2. How to find the softest shirts in the store. Rob’s severe sensory issues and refusal to wear shirts with sleeves or ones that he deems are not soft enough has caused me to return a LOT of clothes. No amount of washing can make a shirt soft enough for him, so we only purchase the softest ones we can find and cut the sleeves out of every single one.  I’m in the process of discovering a way to use the short sleeves cut from shirts.
  3. How to control a terrible temper. When I was young, I had a temper.  I’m sure my parents doubted I would ever learn to control it, but I did.  I needed every single bit of patience I had some days when both kids were having rough days – and I have a typical daughter, too.  I learned that getting angry really wasn’t worth the effort most days.  But, I also learned that when people realize I could blow up easily, I tend to get their attention fairly quickly – and if people see me crying in anger, they scatter.
  4. Laughing really is the best medicine. And honestly, most things are funny, if not at the time, then a little later.  I’ll admit – I still have a few days that are not funny and never will be.  They are days that I thought I would never laugh again.  But, I made it and so will every other autism parent that thinks today is the worst.  Red Koolaid slowing running down my freshly painted dining room walls is funnier than heck now.  At the time, I was ready to blow a gasket.  And that day inspired the name of my blog.
  5. Cinnamon and pepper never leave your sweeper. Yes, it’s true.  You can change the bags many times.  You can clean the guts of the sweeper.  You can use it over and over to sweep up carpet freshener, but you will always smell pepper and cinnamon until you get fed up and throw the sweeper away.  Also – green, blue and yellow food coloring has to wear off your children and it looks like they have healing bruises for weeks after painting themselves with it.  I never did find the red color.  Another thing I learned from this day – children with autism, when coached by a typical sibling – can climb drawers and cupboards like monkeys and enjoy every minute of it.
  6. The same brand of pretzel in different shapes tastes different. It’s true.  The little midget pretzels are acceptable only in certain brands, while the long rods in those same brands must never be touched.  Likewise, the long rods of another brand are delicious, while the little sticks can never be eaten.  Also – the pretzels that can be eaten at home usually cannot be eaten at any other house. Cherry tomatoes are wonderful snacks, but sliced tomatoes are yucky.  Chicken nuggets and French fries are acceptable meals at any place, at any time, but pizza can only be frozen, from a box.  Waffles should not be heated up, nor have any syrup.
  7. All Sesame Street characters, the Power Rangers and the Wizard of Oz are real people. And if you use them the right way, those characters can teach a child (or adult who is still obsessed with them) almost anything.  For years, Rob used lines from the Wizard of Oz, Lion King and Willie Wonka (the original) to communicate his needs.  I am so thankful that most movies are readily available now because when he was little, it was really difficult to find some of them and he wore them out quickly.  I’ve used silly voices (I’m especially good at Elmo, Cookie Monster, Grover and Ernie) to coach my daughter.  I can use stuffed toys to help her communicate when she is getting upset.  Autism parents do what we have to do to avoid screaming meltdowns.
  8. How to be nice – until it’s time to not be nice. I first heard this line from Patrick Swayze’s character in the movie “Roadhouse.”  It fits an autism parents’ life to a T!  When you have to deal with doctors, therapists, teachers, insurance companies, hospitals, other staff and your children, sometimes, you get fed up.  It’s hard to always be nice to people as our parents taught us to be.  I always tried to be nice, but when people decided they could make decisions for my kids based on charts and not the kids themselves, I learned to be not nice.  I learned to stand up for what they needed and not back down when people with degrees thought they knew everything.  They are incredibly smart (usually) but they don’t know what’s best for my kids.  I know my kids better than anyone!  So I’m nice to everyone – until it’s time to not be nice.  Then, watch out, people.
  9. How to speak up for us. I was a shy kid.  I didn’t like being the first person to speak unless I knew the crowd very well. Standing in the background was easier for me and I was quiet in crowds.  Speaking in front of a class was terrifying and likely to make me sick to my stomach.  After autism, I have been invited to speak at many meetings to share autism awareness and the stories of our family circus.  I enjoy doing these presentations because I know every time I reach one person with awareness, that person will reach another.  I also learned to speak in IEP meetings.  After all, I knew my kids the best and I knew what we needed.  Anyone who has been to IEP meetings, or any type of meeting about your child, knows how uncomfortable they can be, especially for the parents.  I learned to listen objectively and to think before I responded to get the kids what they needed.  It wasn’t easy, but my shyness is officially gone.
  10. It’s ok to ask for help.  I know most people know this, but this is still a hard one for me.  I hate, and I mean, hate, asking for help with anything.  I am always told how strong I am and to admit that I need help just drives me crazy.  But, slowly, over the years, I’ve learned that everyone needs help at times and that the strongest people know when to ask.  I have had a few emotional crying meltdowns because I kept quiet about things and didn’t ask for someone to watch the kids so I could sleep.  It’s still not my favorite thing to do, but I do ask when I need help – whether it’s watching the kids or just someone to talk to.
  11. Sleep is the most precious thing. Go ahead and laugh, but if you have ever had to go without sleep for weeks or months on end, you will understand this.  For many, many years, Rob couldn’t go to sleep at night and when he finally did crash, he was up and down several times each night.  I was lucky – he didn’t try to leave the house or destroy anything.  He just got a snack and lay on his bed, singing.  And by singing, I mean, squealing, laughing and shouting odd phrases until he could fall asleep again.  And on those rare nights that he actually went to sleep, Casey would be up singing, dancing and folding socks.  I am so thankful that I finally found the right combination to help him go to sleep and stay asleep most nights.  I am a new person with sleep.  Without it, I am a grouchy, crying emotional wreck.
  12. Socks are amazing and wonderful. Casey’s obsession with socks has been going on for almost 20 years with no signs of stopping. She easily has 250-300 pairs of socks and is always looking for more.  She has every color, holiday and animal you can think of, I think.  To be honest, I don’t really look at them much.  She can spend hours in front of her dresser or on the floor folding and refolding socks while she listens to music.  It is one of her coping techniques.  It’s also a great way to find kind people in the world.  Everyone who meets my daughter finds out her love for socks – usually because she is pulling up their pant leg to see what their socks look like.  Yes – even to complete strangers.  While this is usually met with a smile after I explain why she is doing it, at other times, it isn’t a pleasant experience.  I still hope the man who screamed at her in a craft store many years ago remembers us.  I sent the kids to the van with their sister and then I had a rather loud, possibly cuss-word filled discussion with him.  When it was over, the manager told him to leave and the crowd clapped for me. 
  13. It is possible to hear the same word/phrase/sound for hours and eventually not notice it. Rob gets fixated on phrases that he uses to help calm his anxiety.  When I sold our van last summer, after having it for 13 years, he said “Get the van.”  And said it and said it.  For the first few weeks, it was pretty much constant.  We drove to a park near our house (a five to six minute drive) and he said it more than 50 times.  I heard it every single time that night, but eventually, I only heard it when he was right in my face or yelling it at the top of his lungs.  It took him almost 6 months to stop saying it a lot.  That phrase still pops out every once in a while.  He has several phrases that he repeats over and over when his anxiety is running high.

Any situation can be a learning experience, if you are willing to think outside the box and laugh a lot.  Parenting is funny but when you had autism to the mix, life really gets interesting!  Now – what cool things has autism taught you?

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Autism and the Every Day Never Simple Questions

Autism and the Every Day Never Simple Questions

Autism is part of our lives.  A huge part – even if we don’t always consciously think about it.  I’m facing a decision  now that should be fairly easy, but autism is causing me to rethink everything.

Several months ago, I lost my sweet lab to lymphoma.  She was just a baby when we got her and she grew up around the noise and unexpected jumps, squeals and screams that occur around here.  Even with that, when Casey had a meltdown, Eve would get anxious, barking and trying to get between Casey and I.  She never tried to bite Casey or even jump on her –  just barked like crazy.

(Picture the scene – Casey jumping up and down and screaming bloody murder while the dog is barking a high pitched bark and bouncing around with Rob rocking and yelling “no fits, Casey!”  It’s a wonder my neighbors haven’t moved away!)

Losing her was one of the hardest things I’ve had to deal with.  She was my best friend – the one who listened as I vented and let me cry on her shoulder.  When Mandy and Cory lived in Texas and it was just Casey, Rob and I in the house, Eve was my buddy.  I talked to her about everything and she kept me from being lonely.  When she died, I felt like I lost part of me.  I had no idea when I would ever feel like getting another dog.

In the last few weeks, I’ve been thinking about it.  I miss having a dog around the house, but I still think about her and wonder if I’m ready for another one.  She had so many quirks (I sometimes think she “caught” autism!  🙂  )  I wonder if I could let go of my expectations of the same quirks in another dog.  I wonder if I will love another one as much as I loved her.  And I wonder if another dog could be okay living in my circus.

I thought about getting an older dog – one that may not be as adoptable because of their age.  But – what if they can’t handle the noise?  the sudden movements?  The kids’ safety is the most important thing to me and a new dog is scary.  So maybe a puppy would be better.  One that could grow up with us like Eve did.

And today I realized that once again, autism is dictating our lives.  It should be a simple decision about whether to get a dog or not.  I get so tired of having to overthink every single decision I make.  Would Rob really wear that super soft shirt?  Will Casey be mad if I switch plans from one day to another?  Even what to have for meals!  (though that isn’t as  bad as it once was – I make what I make and Rob adapts to it or makes a sandwich)

It’s exhausting to have to think through every choice I make.  The kids want to go swimming.  Simple enough, right?  No, it isn’t.  Taking them to the pool without help is not going to happen.  Neither is taking them to the lake (though that would be easier, simply because they will stay together and with me).  I can’t take them to the river alone.

They want to go hiking.  Okay – great!  Outside and exercise… except, again, it isn’t that easy.  If we go  near a creek, Rob wants to sit and watch the water and relax while Casey wants to walk as far as she can.  He will walk, too, but watching water relieves his anxiety so much, it’s hard to drag him away from it.

This isn’t to say we don’t go lots of places without an extra adult, but going to strange places or where there are possible dangers is so much easier with an extra set of eyes on them.  They don’t run off like they used to, but who knows when it might happen again?   We do lots of things, but it’s always seems like it’s a big decision to go.  I’m tired of that.

I just want to decide to do something and do it without trying to think through every possible thing that can go wrong.  I want to take the kids to the pool if they want to go.  (I have taken them, but it’s hard and not something I really like to do.  We have a large aquatic center with a kids play area and sets of water slides – too much area for me to be able to watch them easily.)  Tracie will go with me – but there again, we can’t just go.  I need to see if she’s free and wants to go and plan from there.  I wonder if families who just decide to go swimming and leave know how lucky they are?

I try not to overthink choices too much but it’s hard when Casey and Rob are so different – even without the added stress of autism.  She wants to go – he wants to stay.  She will try anything – he has to think about it and often says no.   They are similar in ways, just like siblings usually are.  But, still, don’t you think it’s exhausting to always have to think about big (and little!) decisions so much?

Don’t you wish you could just say “Yes!  We’re going!” without thinking about the possible sensory issues or meltdowns or safety or food preferences?  I know I do!  At the same time, I wouldn’t change either of the kids.  Autism is as much a part of them as their hair color.  There are just times that I don’t want to have to think about how autism will affect a decision.

Most of the time, I don’t really think about it, I guess.  Our life is autism and I don’t think about a life without it.  I make decisions just like every other parent, based on what would be best for our family.  Autism is just so unpredictable that sometimes, decisions are hard to make.  I wish I could just decide to get another dog and go pick one out.

I asked Casey what she thought about a dog.  She wants a big one.  Rob wants Eve.  So do I.  So like everything else, we’ll see what happens.  I’m a firm believer in things happening when they are supposed to.  When it’s time, the right dog will find us.  Eve will make sure of it.

 

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A Diagnosis of Autism – Now What do you Do?

A Diagnosis of Autism - Now What?

Mandy was at a craft show today and met a lady whose grandson had recently  been diagnosed with autism.  Mandy talked to her for a while and shared a little of the conversation with me.  It brought back memories of similar discussions with other parents I’ve had over the years and shows again how lucky we were with our first few months.

Casey was very healthy and got her well-baby check-ups at our county health office, so our doctor never had a chance to tell us she was behind in many areas.  The nurse at the clinic didn’t seem concerned, but did say we should see about speech therapy for her.  I started driving her to a city 35 miles from home once a week for therapy.

Her therapist suggested she might benefit from preschool, so I enrolled her in the Y.  The first day I went to pick her up, I could hear her screaming from outside.  She was under a cupboard and out of control.  She was scared to death and overwhelmed by the noise and the differences in her routine.  She eventually settled down, but it was clearly not the right place for her.  The teachers were amazing and got on contact with our local school district.

Casey started her new preschool and loved it.  She adored her teachers and they understood a little more about autism.  During her summer break, she was officially diagnosed with autism.  We were pretty sure autism was the cause of her communication difficulties and the other signs that were beginning to show up in her life so hearing the doctor say the words wasn’t a big shock.

Since she was already enrolled in a specialized preschool, we merely continued with what we were doing – speech once a week and working with her on the same things her teachers were doing.  And I also began to watch Mandy and baby Robbie for signs of autism.  I couldn’t change it if they did have autism, but I wanted to know early.  When he was old enough, he started the same preschool that the girls had gone to.  He was already getting therapy before we got a diagnosis for him.

I had an amazing support system with teachers, therapists, family and friends.  No one really knew anything, but we all learned together and same days were not good.  There weren’t as many options for therapy in 1991 as there are now and when we did find something we wanted to try, it was rarely available in our small town – or insurance refused to pay for it.  And so the fight began…

I had to argue with the insurance company.  I had to call the doctor over and over to get prescriptions for therapies and then try to figure out how to pay for it.  Social Security wasn’t an option as it is based on family income until the child is 18.  So I did what I could and kept reading.

Most of the time, I felt incapable of getting the kids what they needed.  I was just a mom – not a professional with a bunch of letters after their name.  Surely, they knew what was best – right?  No!  And that was the hardest and first lesson you will have to learn.  YOU know your child best – their needs, their difficulties, what sets them off, what makes them happy.  Yes, you need to listen to the professionals, but never be too afraid or too shy to stand up and speak your mind.

I was too shy.  For months, the special education coordinator intimidated me.  He intimidated everyone – often, in meetings, he tapped pencils or shuffled papers and seemed to be not listening to a darn thing that was being said.  At the end of the meeting, he would hand me a paper and tell me to sign it.  And for a long time, I did.  I would leave meetings in tears – from anger and sadness.  Until one day, he shuffled his papers one too many times and Mama Bear showed up for the first time.

I slammed my hand on the table and told him that she might be a number to him but Casey was MY DAUGHTER and he was going to listen to every word being said or I would go over his head and find someone who gave a damn.  That was a turning point for us – and when he retired many years later, I called him a friend.   Always, always be nice as long as you can – but, stand up for yourself and your child, too.

Find a doctor you are comfortable with and who listens to you.  You are allowed to ask questions – if your doctor rushes you out or doesn’t acknowledge your child, you may want to find another doctor.  Hopefully, your doctor is like both of ours – they are willing to do whatever they can to help the kids.

One of the first phone calls I really recommend you make is to your county board of developmental disabilities.  They will have services that can help your family and be able to point your in the right direction for other help.   Most of the time, when your child becomes a client of your county board, you will be assigned a case manager (they are called service and support in our area) who will be the person you contact whenever you need help.  We have had amazing SSA’s over the years – I’ve cried to them and yelled and told them I was just too tired to deal with anymore.  They are my friends and I’m so grateful to each!

Social Security might be an option to help pay for services for your child, but remember, until your child is 18 it is based on family income.  It’s worth a call, though.

If your child is 3 or older, call your local school district.  Just a head’s up, though – all of this takes time and you may have to call more than once to get what your child needs.  Be persistent and know that, while your child is the most important to you, the district has 100’s of kids who are just as important.  Try to be patient – but persistent.  The squeaky wheel gets the grease, after all.

Some hospitals have therapy departments that may be able to service your child.  It might also be possible for lower rates if your insurance won’t pay.  It can’t hurt to ask.  Get used to asking for things because that’s a new part of your life.

Remember that this stuff doesn’t need to be done all at once.  Give yourself time to adjust to your new life.  Your child hasn’t changed, but having a diagnosis changes you.  Before, you were just a parent, now you are a parent of a special needs child.  Give yourself time to grieve, if you feel the need.  Some days, all you need to think about is just to take deep breaths.  Take care of yourself – that’s more important than ever.

Look for support, either in a group or online.  You will be surprised at how much better you will feel just by hearing what other parents have to say.  Lean on others and let them lean on you.  Most important – remember your child is still the sweet little person you love more than anything in the world.  Autism won’t define him/her any more than their hair color!

 

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Autism and a Mom’s Fear of No Fear

Autism and a Moms Fear of no Fear

A few weeks ago, I was reminded again that even though Rob has learned to fear a few things, he still doesn’t have a clue about how dangerous some situations can be.  Just another fun aspect of autism we deal with every day.

Rob was walking with a group from their workshop and never bothered to stop at a corner to look both ways before he stepped off the curb.  Luckily, the staff was quick and there were no cars coming.  But still, I have been trying to teach both of them to look both ways before crossing a street since they were tiny and it just won’t sink in.

Casey will flip her head like she’s looking, but she’s just doing what she thinks I want.  She isn’t really looking at all.  And she’s stepping into the street as she “looks.”  Rob won’t even hesitate to walk across a parking lot or a street.  He doesn’t even pretend to be looking.  I’ve got a grip on both of them or they are close enough to grab when we walk anywhere.

Part of the reason they aren’t scared is that even though I tell them a car might hit them, it’s never happened.  They have nothing to help them understand that they could get hurt and very badly.  I think the only way for either of them to understand the danger would be for one (God forbid!) to get hit by a car.  Even then, I’m doubtful the other one would be more careful.  It’s not something they have ever seen happen, so obviously, it’s never happened to anyone.

They both understand a stop sign.  They just don’t know why it’s there.  I’ve tried saying “Look, I’m stopping at a stop sign” when I’m driving, but they don’t even look up.  When we walk, I say “Look – a stop sign.  What do we do?”  One of them will say “stop” as they walk right past the sign.

I don’t want to even think about the times I walked through parking lots when Rob was a baby.  I would be carrying Rob, with a death grip on Casey and praying that Mandy would hold Casey’s other hand (Mandy is 18 months older than Rob – hardly more than a baby herself when I was trying to get us safely to the car).  I carried Rob longer than he needed, simply because he and Casey would both dart away and it was easier to carry him.  Thank God, we never had a major issue (just a minor one with Mandy when she was older!)

When Casey was 7 or 8, we were all outside playing.  Suddenly, I realized she wasn’t in the backyard anymore.  I thought I would throw up as I ran to the front of the house and the street.  No sign of her – I ran around the house again, calling her name and wondering who to call first to help me find her.  As I was making another circle, I heard her giggle and looked up to see her legs hanging off the porch roof.  She had climbed the wrought iron corner posts and was just sitting there.  I still don’t know how she managed to climb over the edge without falling.

I stood there looking up at her while she laughed and kicked and wondered if I could get her down without both of us falling.  I was heading in to call the fire department (my dad was a captain) and ask for help when I had an idea.  I asked Casey if she wanted a popsicle – and she flipped onto her belly, stuck her feet on the posts and came down.  I couldn’t breathe until her feet were safely on the porch.  “Red!” she said and went inside.

She also jumped off my dad’s boat more than once.  She walked out into water until she had to tip her head back to be able to breathe and keep going (one of us was always thisclose to her – and she always had a life jacket one!)  She grabbed at knives and jumped off the top of their swing set.  She was crazy on the trampoline.  She ran when she had the chance in stores or at school.

Rob was even more of a dare-devil than she was.  He jumped off the roof into a pile of shingles, did a somersault and took off running.  He jumped into pools with no thought of whether he could touch or not.  He climbed scaffolding (yep – I lost him on it once – thank God I heard him giggle as he watched us run around the house looking for him!)  He tried walking down our basement steps with a blanket on his head and fell – earned him a helicopter ride to the nearest children’s hospital when he wouldn’t wake up the next morning.

He jumped down the other steps and broke his collarbone.  He fell and cut his head open – stitches.  We no sooner had a hospital bill paid off than he did something else.

Neither of them understand the danger of strangers.  They have been told more times than I can count to never leave with someone they don’t know, but I worry that if the stranger offered them the right things, they might go.  They know to find a policeman or fireman if they need help and they both know their names and addresses, but would they really look for help?  I doubt it.  Having them disappear terrifies me.

Even though they have both learned to fear some things, I still worry when we go somewhere different.  I’m more relaxed, but still know that any second, one could dart away.  Rob has a healthy fear of deep water now (he jumped into a pool with a friend who is much taller than him and couldn’t touch – scared him beyond words)  Casey is afraid of heights (she insists on riding the Ferris wheel every year at the fair, but it scares her to death when she is at the top!)

I am so thankful they are both learning to be more careful.  I know that they will probably always be somewhat fearless compared to others, but at least they aren’t jumping off the roof anymore!  And I know how lucky I am that neither of them ever tried to get out of the house.  I know several families with more locks on their doors and windows than a vault and still need alarms.

What I really want is to watch them every second of the day, but I know that’s impossible and not healthy for any of us.  They are adults and need some space from me – and I need a break from them.  But still, I think about it – the world is such a scary place – especially when you don’t understand those dangers.

My plan for the future is simple – lots of hair coloring to hide the gray hairs that pop out every time they run across the street without looking or when Rob swings so high or when Casey wants to look at coloring books in a store by herself.  And lots of deep breaths to keep from panicking at their little “thrills.”

Be safe, everyone!

 

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Autism – Never Give Up, Even When you are Exhausted!

Autism - Never Give Up!

Today, I saw more proof that no one should ever give up hope when their child has autism.  While I would never say that every child with autism will progress in the same way, there are always improvements – sometimes, so tiny that you can barely see them, but they do happen.  And maybe they won’t happen in the time frame you want, but things can change quickly.

Casey wanted to go to the Memorial day parade in our town this morning.  I was going to cover it for our local paper, so it was no big deal to go.  Rob said “no fanks” when I asked if he wanted to go.  He went last year and watched it, but I can’t say he really enjoyed it.  Besides, it was hot today!  So he went to Grandma and Grandpa’s house and Casey came with me.

As soon as we sat our chairs down, she started giggling and rocking.  She was so excited!  It made me remember her as a little girl and how impossible parades were.  Mandy always wanted to go and Rob would sit beside her and watch, but Casey wouldn’t sit.  And if I tried to hold her on  my lap, she yelled and screamed.  I couldn’t trust her to sit by herself at all because she would dart away – into the street or to grab someone’s drink/food.  We didn’t go to many parades.

When the parade got to us today, I stood up to take pictures.  As the American flag made its way to us, I turned to tell her to stand up – and she already was!  With her hand over her heart!  I looked around to see who she might be mimicking, but there wasn’t anyone with their hand over their heart.  I couldn’t help it – I got choked up.  She remembered the many times I told her to stand for the flag!

We settled down to watch the rest of the parade and she laughed her way through it.  Even when candy was thrown from vehicles, she never made an effort to get up and get it.  When the parade was over, we walked to the Court Square for the ceremony.  Here was where I was concerned.  I knew she would probably sit for a little while, but how quietly, I didn’t know.  She might add her own sound effects to the ceremony.  Or everyone would hear her announce she had to go potty or she was hungry.

Instead, when the announcer asked people to stand for the invocation, she was on her feet, her hands clasped under her chin and her head bowed.  (I had no idea she even knew what invocation meant – we always say pray.)  When the prayer was over, she loudly said amen and grinned at me.  When the National Anthem started, she spun around to look at the flag (still standing) and started singing loudly.  She and I were among the few to be singing – and the others I heard all had disabilities, too.  (Why don’t people sing the anthem??)  When the Pledge of Allegiance was said, she stood and proudly recited it, too.

I was crying.  This amazing young woman was proudly honoring her country!  She remembered what to do and never had to be reminded.  Even later, when Taps was played, she stood and listened quietly.  She stood when she felt it was the right thing to do – she didn’t look around and see what others were doing.  All I could do was hug her and tell her how proud I was.  (She, of course, looked at me like I was crazy – she had no idea why her actions made me proud.)

This is the same little girl who used to fight about going into stores – the assault on her senses was too great.  She screamed when I left the room because she didn’t know if I had disappeared.  She beat her head on cement walls and put her head through two windows.  She ran from me – she ran from teachers.  She screamed when things changed her routine.  When in to the middle of a meltdown, she grabbed my hands to try and make me hit her head.  (sensory issues – she desperately need deep pressure – it took me years to figure that one out!)

I am not telling you any of that so you feel sorry for her.  I’m telling you so you can see that every child, no  matter what behaviors they have, can improve!  You have to keep your faith and hope, even when you spend your days crying from exhaustion and going on 2-3 hours of sleep a night.  Trust me – I know exactly how you feel!  Please, please – never give up on your child.  Dark days do go away (and yes, sometimes, they come back – but they always leave again!)

Casey’s changes didn’t occur in my time frame (otherwise, she would have been having days like today when she was 8!) but it did happen.  She grew up – I learned how to help her.  Keep working with your child – keep fighting for services – keep your faith!

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Autism Moms and the Need to Just Chill Out

Autism Moms and the Need to Chill Out

As soon as Mandy sees this post, I can imagine the look on her face – she told me to do just chill out several times today.  I know I need to do that, but you know how hard it is!

She called me this morning and asked if I wanted to bring Casey and Rob to a cookout at her in-laws camp site and then take a long kayak trip.  Oh man!  I haven’t been on the river yet this year and I wanted to go so badly, but the autism mom kicked in.  Who will be there?  Do they know about autism?  What if Rob gets loud?   That was the first time she told me to chill out.  “we got it covered, mom.”

Okay, she thinks no one will be bothered by the loudness, what about taking them on an hour long trip?   We hadn’t tried that, yet – only playing by the camp site.  “I got it figured out, mom,” she said.  Her plan was to tie their kayaks or tubes to ours.  And I wanted to go so much.  I still wasn’t sure about Rob, but I could just take him home if he got anxious.  So I asked them if they wanted to go and Rob was so excited he changed into his swimming clothes right then.  (We weren’t leaving for a few hours!)  I was amazed, as he hates to wear shorts.

As I was driving, I thought about how many times I wanted to do something and really wasn’t sure about the kids so I backed out.  It’s just easier to stay at times – you all know that.  And, really, there are things that I know one or the other won’t enjoy and I either take just one or we stay home.  I did that yesterday – we were all invited to a graduation party and I knew Casey wanted to go.  I thought about taking Rob, just for a few minutes, but he said “No, fanks!” as soon as I mentioned it.  He went to Grandma and Grandpa’s house and Casey went with me.

So we get to the camper and I’m getting nervous.  Rob started singing his anxious song, but he was doing it quietly and only once.  He wanted to see the water, so we sat on a bench where he could watch the river flow by and he got quiet.  He asked for the boat once or twice, but I told him we were going to eat first and he was okay with that.  Casey just watched everything and rocked a little.

When it was time to eat, I asked Casey to wait for Mandy to get her plate and again, I got the “chill out, mom” look from Mandy.  So Casey fixed her own plate (she’s perfectly fine doing that – I was just trying to keep her out of everyone’s way – course, no one was paying attention anyway – they were fixing their own plates!)  They both ate (I was impressed – you can never be sure Rob will eat – especially when he is excited about something).

As soon as we finished, Rob started getting wiggly.  He was ready to get in the boat.  Mandy and Cory got the kayaks ready while I wondered if Rob would actually step down into it.  The water was a little higher than when we were there before and he refuses to get his shoes wet.  Casey got into hers first – squealing “help” a few times – she thought we were going to send her down the river alone.  She calmed down as soon as she saw me get into my kayak and the rope holding us together.

I got us out of the way and turned to see if Rob would get in.  And was amazed when he stepped right in and settled down with his paddle.  Soon, he and Mandy were beside Casey and I and we were off.  We had decided to take them to the end of the campground and see how they were doing.  If either was anxious, it would be easy to get out there.  They both wanted to keep going.  Rob looked half-asleep – he was so relaxed.  He even splashed his hands in the water!

Now that we are home, Casey said long trips are fun, but about halfway through the trip, I had serious doubts about her.  She kept taking big breaths and sighing.  But she never got upset.  She didn’t relax as much as he did, but she seemed okay.

I looked around at the beautiful blue sky, the green trees along the river and the kids doing something together and wondered why I ever thought about not coming.  We would have missed spending a gorgeous day outside with family and friends.  It’s just that autism mom way of thinking.  And I know we all need to just chill out and go places.

Trust me, here – I am not saying you should take your child everywhere.  You know there are places that your children won’t enjoy – just like I knew Rob wouldn’t like the graduation party.  But we owe it to our kids to try new things!  We owe it to them to show them as much of the world as we can.  It may not be easy, but life rarely is – even without autism.

My advice is to try not to be scared at the thought of trying new things with your child.  It’s not that I’m afraid of trying new things – more that I overthink what might happen and worry about ruining other people’s good times.  Like today – if Rob had gotten anxious, we would have just come home.  It wouldn’t have been a big deal as Casey could have stayed with Mandy and Cory.  But I let autism into my head and it’s hard to get out sometimes.

Autism dictates so much of our lives.  It’s a simple fact that we will never be able to change.  What we can change is our reaction to it.  Even typical people have issues sometimes, so why do we worry so much about taking our children with autism into the world?  Take whatever you think might help and go.  Stay a minute, stay an hour – whatever you and your child can handle.  Only by experiencing the world can your child want to more a part of it.  If he/she has no idea kayaking exists, how would you know if they enjoy it?  You might have a star ball player or expert piano player – but only if you let them try.

Take a deep breath, chill out and go!  It won’t always work out, but at least you tried!

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Happy Mother’s Day to all Amazing, Awesome Autism Moms!

Happy Mother's Day to all Amazing, Awesome Autism Moms

Happy Mother’s Day, to all the awesome autism moms!   The one day of the year when you get to sit down, relax, have a cup of coffee (or a can of coke or glass of wine!), read a book, take a nap or watch an entire movie.  Wait – why are you laughing?   Honestly, I couldn’t even type that with a straight face.

To be honest, I had a completely different thought in mind for this blog earlier today and it just wouldn’t come out the way I wanted it to.  I decided to give up on it for a while and went to celebrate Mother’s Day and my brother’s birthday with family.  The cookout was going to be at a pond on the family farm.  I wasn’t worried about either of my kids going into the water (as much as Rob loves water, he won’t get his shoes wet – and so far, he isn’t willing to go barefoot at all!)  but I was worried about keeping him entertained and not getting into everything or singing his stress song at the top of his voice.

As soon as we pulled in, they both jumped out of the car and ran to the gathering.  Rob was amazed to see the dock over the water and immediately sat down to watch the water.  He was even more excited to see my niece and her cousin in a paddle boat and I knew he wanted to go for a ride.  He didn’t say anything about it, though, so I let him watch until after we had eaten.  The roughest part of the evening was his discovery of a pile of magazines he was bound and determined to get.

I told him no magazines.  He tried to “sneak” past me.  (He doesn’t seem to realize his sneaking skills are severely lacking – and he’s 5’10”!)   So I used my stern mommy voice and said no magazines, yes boat ride.  That finally got through to him, but he was still thinking about them.  We got him into the paddle boat and within a few seconds, I could see his anxiety levels dropping.  He paddled as hard as he could and then just stopped and we floated.  He put his fingers in the water and talked about fish and turtles.  I was shocked that he put his hands in!

It was as we were floating around that it occurred to me what I really wanted to say today.  What other people might see as little victories mean the world to me – and to every other mom (and anyone who loves someone with special needs!).  That’s what I want you all to celebrate today!  Yes, your life may  be harder than someone else’s – but it isn’t as hard as other people’s.  There are times I get so tired of doing baths/showers every night and I get grouchy about it.  But – then I think of the people who have to use lifts to get their loved one into a bath, if they can even do that.  I think of the parents who would love to be giving their child a bath every night, but can’t.  It’s all in perspective.

Give yourself permission to be whiny at times.  We all do it, but the guilt autism moms (and dads!) feel at being tired of things keeps us from talking about it.  Talk about it, anyway.  Brag to everyone about the smallest steps forward your loved one makes – if someone isn’t excited for you, ignore them and brag to someone else!  You have every right to brag, too!  You are a proud autism mommy – show the world!

When I share our story, I try to tell you how our lives really are.  Casey and Rob have had so many issues they had to deal with as children – and as adults.  I don’t sugar coat anything.  For a while, life was hell.  Some days, Casey screamed the day away.  I couldn’t figure out how to help her – and how to be a good mommy for Mandy and Rob, too.  I hated that I wasn’t a good enough mom to know what to do for her.  I hated that I had to depend on a doctor that was two hours away to help me with ideas and medications.  But – look at her, now!

I write to give each of you hope.  Our kids change quickly – and we may never know why.  I’m still trying to figure out the changes in Rob, though I’ve mostly decided to just love every minute of it!  We went to Prom last Friday and he is smiling in nearly every picture – even wearing a shirt with sleeves!  He danced the Twist with us and tried the Cotton-Eyed Joe.  The moment that brought tears to my eyes was when he slow danced with me, then Mandy.  He put his hands on my shoulders and swayed back and forth.  It’s the first time he’s ever shown any interest.

Instead of wildly dancing (by that I mean she runs back and forth like a deer – flying low and leaping), Casey stayed right with Mandy and I and she danced like we were.  She tried to follow the line dances (she doesn’t know right from left, no does she care!) and mimicked what we did.  Another proud autism mom moment.  And that’s what my Mother’s Day is about.  Quick, fleeting moments that may not mean anything to other people, but that mean to world to me.

Rob let his fingers touch the water.  Casey sat politely and waited her turn to fix her plate at supper.  Rob rubbed the dog’s head.  Casey played in the gravel and watched the little boys with a smile on her face.  He paddled a boat and looked for turtles.  She got in the boat, even when she was scared of the water.  They both said good bye and thank you as we left.  Little moments.

I hope each of you enjoyed little moments in your day.  I was lucky enough to have all of my kids with me at lunch – to see my parents, my brother and his family, and my extended family.  I hope that each of you has a big support system that you can rely on.   I know that isn’t always possible, but remember that even if your “family” isn’t around or can’t understand, others will be willing to help you.  Family isn’t defined by blood – it’s those people who walk into your life and never leave.

So -Happy Mother’s Day to all the autism moms out there.  And to the dads who are doing both roles – and the grandparents.  Today is a day to celebrate little victories and all of your hard work in those small, huge steps.  I hope you get plenty of hugs – no matter how you get hugs!  They might be tight bear hugs, or forehead to forehead, or light squeezes, or just a lean.  However your child shares love – enjoy every precious moment!