Category: autism acceptance

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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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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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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 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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Autism Moms (and Dads!) – Follow your Gut Feelings to Help Protect your Child

Autism Mom - Follow your Gut to Keep your Child Safe

When your child is non-verbal or can’t communicate easily, one of the biggest fears of parents is that someone will mistreat or be mean to their child.  I know that feeling well – and a video I saw last week brought those fears back to the surface.   The video showed a bus driver clearly mistreating a young girl with autism who wouldn’t get off her bus.  To make matters worse, an aide was standing outside the bus waiting for the child – and she left when the driver closed the door.  Why in the world didn’t she get on that bus to help that little girl?  Autism moms, let me tell you – had that been my child, I would probably be in jail right now.

I don’t condone violence.  At one point, Casey had a teacher and a principal that were not a good match for her.  The details are deep in my heart and I’m not sure even Mandy knows what really happened.  She was just a little girl and may not have understood, anyway.   To say I was angry at the teacher is an understatement.  I wanted to smack her – to beat on her.  I wanted to do to her what she did to Casey.  I hated that woman – and came to severely dislike the principal that couldn’t see what was happening.

We were advised to sue the school district.  Even the superintendent knew we would win.  We chose instead to remove Casey from that woman (actually, the school moved her – Casey stayed in the room she was familiar with.) and not take legal action.  This was our choice for many reasons – but when I think about that woman retiring with a full pension – and the other children she may or may not have been abusive to – I am angry.  I am beyond Mama Bear angry.  But, it’s over and done and I can’t change it.

But I can be more careful about the people around my kids.  If Casey or Rob seems to not like someone, I keep a close eye on that person – and keep the kids away from him or her.  I’ve told you before how quickly they “read” people.  It’s always interesting to me to see who they don’t like and wonder what is deep inside that person that the kids can sense.

I listen to my gut feelings now.  If something seems “off” about a situation, I check into it.  If the kids suddenly don’t want to do something or go somewhere that I know they enjoy, I find out why.  Several years ago, there was an issue that concerned me and I just started dropping into where they were and checking on them.  Mandy and my parents would stop in, too.

A few years ago, Rob was involved in an incident.  The details aren’t important now, but what is important is that it shook the trust I had in people.  I understood the staff’s frustration, as I know either of my kids can act up (I’ve never been a mom who says my child would never…  I’m sure they would!)  What I was the most upset about is that I wasn’t told about it until I started asking questions.  Casey kept repeating a phrase about Rob and he was upset.  Unfortunately, by the time Casey got the words out, it had been a few days since the incident.

Rob finally was able to say a word or two and another mom contacted me because their adult child was a witness and had told her what had happened.  I confronted the issue and it was taken care of.  My gut told me the day it happened something was wrong – Rob was just off and Casey was wound for sound.  But, I didn’t follow up on it right away.  (No excuses – except maybe I was just so darn tired of autism)  My gut kept at me and I checked into things.  That situation is resolved and I’ve asked to always be told right away if something happens while the kids are at work.  (Like I said, I know things happen – I just really hate not being told what’s going on!)

Even if your child is non-verbal, you will see signs something is wrong.  Maybe they get upset about getting on the bus all of a sudden.  Maybe they won’t eat at school.  Maybe they can’t sleep at night or a new behavior emerges.  High anxiety is a possible sign of a problem somewhere.  It’s hard to know what the problem might be until you start digging.  If your child refuses to get on the bus, start with the driver – has something happened?  Was there a change in the route?  Is it too noisy?  Ask the other kids on the bus – or their parents.  If the bus has a camera, ask to watch the video.

As your child with autism grows up, you will learn to become part private detective.  It’s exhausting at times, but a necessary thing to do.  Visit the school.  Become friends with your child’s teacher.  If you have concerns, voice them.  Most teachers are wonderful, but there are always a few that aren’t.  If you don’t think your child’s teacher is a good match for your child, speak up.  Talk to the teacher – talk to the principal.  No, these are not easy conversations to have, but you have to do it!

Drop in your child’s class/school.  If you are told this isn’t possible, do it anyway.  You have the right to see your child at any time.  If a school refuses to let you visit, that’s a giant red flag – always follow up on that!  Take someone else with you and go!  (if a situation gets tense, always take someone with you  when you go – a witness might be needed)  Climb the chain of command if you need to.  Schools want only the best for their students –  if a teacher is a problem, they want to know.  (at least, good schools do!)

You know your child the best.  If you get a weird vibe that something is wrong, don’t ignore it or assume you are just being over-protective.  So what if you were wrong?  You laugh about it and move on.  But – what if you are right and you do nothing?  Your child can’t help themselves – you have to do it.  Do whatever you have to do to make sure your child is safe.  You might realize he/she is only anxious because puberty is starting or they are going to go through a growth spurt.  Or you may save them from a traumatic situation.

Trust yourself.  Trust your instinct.

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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!

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What is the Best Way to Teach Communication for People with Autism?

Best Way to Communicate for People with Autism

I’ve been asked so many times “How did you get Casey and Rob to talk?  What’s the best way to teach communication skills?”  And I have an answer – I have no idea.  I don’t know.  We got lucky.  The stars were aligned.  I don’t mean to be flippant about my answer, but I just don’t know.  I wish I did.  I would be rich!

But seriously, every single communication device has good points and bad.  And, every person with autism is different.  What worked with Casey, Rob had no interest in.  I’m still trying to figure it out.

Casey could sing entire songs as a toddler, but she had no interest in using her words to ask for what she wanted.  Even into preschool, after a year of speech therapy, she had few words that she used consistently.  Her teachers used PECS (picture exchange communication system) with her and she began to understand that she could ask for what she wanted.

They printed the PECS cards of everything that could think of that she might want and put velcro on the back of each card.  Using a long strip of cardboard with opposite velcro, they constructed sentences for her to repeat.  She could point to each picture as she said the words, such as “May I have cookie, please?”  I also started using American Sign Language with her.  I found out that she could say the word easier if she could sign it, too.

When she was 5, we had Auditory Integration Therapy done with her.  We knew her ears weren’t hearing normally and had heard good results with this therapy.  My mom and I (and Casey, 2 year old Mandy and baby Robbie!) spent two weeks in a hotel about three hours from home.  To add to the “fun” we all had pink eye.  My dad and their dad joined us over the weekend.  My best  memory of that trip is that 4 days after Casey started the therapy, she said “doughnut” at breakfast!  I hadn’t asked her what she wanted – she volunteered she wanted a doughnut.  And I cried.  We all cried.  (she did get a doughnut!)

The therapy was done in June and we continued to hear a new words throughout the summer.  She still didn’t use whole sentences, except the ones we had scripted for her.  And if she was having a meltdown, communication was non-existent.  She simply couldn’t get the words out when she was upset.  Meltdowns were common when she started school.  She had them at school often, but at first, we didn’t see them at home (probably because she didn’t have demands on her here)

Now, Casey is more likely to have a “conversation” with you – about what she wants to talk about, of course.  She won’t sit and visit with people, as she sees no reason to do that.  If she wants something, she is able to tell me what she wants.  She can share memories and answer most questions.  I try to always remember to say “Tell me what you want” instead of “what do you want?”  (I highly suggest you try that with your child – statements are much easier to process than questions).

Rob had more words than Casey as a toddler, but he was also less likely to use them.  Mandy spoke for him all of the time.  When he wanted something, he pointed to it and Mandy told me.  I asked her so many times to let Rob talk, but she was so earnest in wanting to help him, she couldn’t understand why she shouldn’t.  When she started preschool (she went to the preschool our school district offered – typical and special needs children.  It was where Casey had gone and she loved the teachers), I was amazed at how many words Rob could say.

He didn’t see any reason to talk beyond what he needed, but he had a huge vocabulary compared to Casey at that age.  (She understood everything – she just didn’t acknowledge the words)  He loved being read to and pointing out objects in books.  He was still so far behind other children his age, but at least I knew the words were there.  With Casey, I was never sure.

I used ASL with him more than I did with Casey.  It’s funny, because once in a while, she still signs please and thank you as she says them.  Rob liked to rip up the PECS cards, so ASL was the better choice for him.  I still use it with him, especially when he is getting anxious.  We use later, stop, listen, now, wait and look a lot.   He understands a long list of signs and used to use them often.  Now, he tends to just say what he needs, but once in a while, he does sign as he says his words.  If your child has any sensory issues with their ears, trying ASL may be a good choice for you.

I also suggest that when you talk to your child, make sure you give them time to process what you said and form an answer.  Rob was in elementary school when we discovered that if he was asked a question and given 30 seconds to answer, he usually would.  I was thrilled with this and still give him plenty of time when I ask him something.  (By the way – 30 seconds is an eternity when you are trying NOT to say anything and waiting for a response!  Keep waiting, anyway!)

Some people are completely against using ASL because they think it means they are giving up on their child speaking.  This can’t be farther from the truth!  You are simply giving your child another way to communicate as they learn to use their words.  And, the reality is, some people with autism will never have verbal skills, but they use other ways to communicate and the results are amazing.  Be happy with whatever way your child chooses to communicate!

Casey and Rob both have iPads with a communication app on them.  They love Proloquo2Go.   They both understand how to use the app (it’s easy – you can even add actual photos of items your child might want) but they tend to say what they want after playing with the app.  They both like to use the app to make sentences that are funny to them.  Rob especially likes to type sentences such as “The dog is purple” and just laugh and laugh.

There are so many techniques for helping your child communicate.  You know your child best and what might interest them.  They may like the picture exchange actions or a communication device might catch their attention.  You will have to try many techniques and constantly work with your child to improve their communications skills.  Notice – I didn’t say “verbal skills.”  I said communication – in whatever form that takes!

Think of the people with autism who never speak, but can type their thoughts.  Or the ones who sing.  Or who can sign.  Never give up, but adjust your dreams.  You may never “hear” your child say “I love you” but you may see in it signs, in words or, most definitely, in their eyes.

I wish I had the perfect answer for each of you.  I wish I could promise you that your child will be communicating with you soon.  What I can tell you is that you will learn how to communicate with your child.  It may not be long talks around the supper table, but you will each learn the best way to communicate.  It may be an odd assortment of techniques that work for your family.  It won’t matter how you communicate – it just matters that you do and that you accept however your child chooses.

 

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Why do We Judge Other Autism Parents?

Why do we Judge Other Autism Parents?

I follow several Facebook pages of parents with kids with autism.  Some are just starting their journey and some have an adult child, like me.  The other day, I read a post by one of the mom’s that really got to me.

She was venting because another autism mom attacked her for being happy that the spring break was over and her son was back in school.  She was amazed that anyone, especially someone who has a child with autism, could be upset with her because she was happy to be back in their routine.

The other mom said the break was “only” two weeks – what kind of parent can’t handle being around their child for only two weeks?  She went so far as to say the mom should be ashamed of herself for wanting to be away from her child.

I posted a reaction – anger.  My response was simple – every parent, regardless of whether their child has special needs or not, is ready to get back in the routine after a long break.  Any parent who says they  never need a break from their kids is lying – to themselves or you.  We all need a break – from the kids, from our spouse, from our jobs.  Autism just makes it that much harder.

And, even more important, that mom had no idea what the other home was like.  She might be lucky enough to have an “easy” (is there such a thing??) child with autism, but none of us know what others’ lives are like.  As much as I share with my autism mom friends, they don’t know what it’s like in my house, day after day.  They can imagine, just like everyone else.   And, while I may have a good idea of what their lives are like, I really don’t.

I can picture what it’s like having a child who is blind with autism.  I can try to imagine what it’s like to live with a child who may become violent.  I can try to imagine conversations with a high-functioning teenager.  They can try to picture my life with two moderately affected young adults.  It just doesn’t work.

So why do parents judge each other?  We are all in this together.  What good does it do anyone to toss negative comments around?  We all have to deal with enough negativity with the rest of the world.  We need to let go of the whole judging thing.

I’ll admit – I’ve thought before that someone is handling a situation in a way I wouldn’t.  I can say I would “never” do something – but I’m not in that home.  There is no way I could possibly know what those parents go through every day.  Have I thought people were crazy to do things they do?  Sure – as I’m sure people have thought the same about me.  I’m ok with that – some days, I’m sure I’m crazy.

You wouldn’t tell a typical parent how to raise their child.  Why would you try to tell a special needs parent what they are doing wrong?  Why would you attack someone for voicing their feelings?  Sure, you can say you would feel differently, but don’t make anyone feel bad because they don’t do things your way.

It’s impossible for anyone to know the journey we’ve walked.  Even the people who were right there with  me, but didn’t live in the house, can’t always know it all.  I’ve always been open to hearing the ideas that other people have, but I don’t think I should be made to feel bad if I don’t follow all of their advice.  I know Casey and Rob better than anyone (except Mandy!) and I’ll always do what I think is right for them.  It may not be what other parents would do, but so what?  Other parents are not my responsibility.  It really is that simple.

I feel so bad for parents who are truly doing the best they can that are getting ridiculed or judged by other parents.  News flash – none of us are perfect – we are all stumbling through this journey as best we can, just like every other parent in the world.  Instead of offering judgment, why not offer an ear?  a hug?

My rant is over.  I just hate to hear about parents getting attacked for sharing their feelings.  If we can’t share online, somewhat anonymously, then how can we share with our friends? I want my friends to know that even if I don’t feel the same as they do, I’ll always be here to listen.  I won’t have the answers they need, but I can offer a hug or a shoulder to lean on.

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Autism and a Happy Easter to All!

Autism and Happy Easter to All

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

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

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

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

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

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

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

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

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

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

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

Happy Autism Awareness Month, too!

 

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

30 Years of Autism and Counting

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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