Category: autism parenting

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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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Summer Camp Time – How to Spend the Quiet Time

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

People with autism

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and Guardianship – When you Need to Consider Being a Guardian

Autism and Guardianship

I’ve been asked several questions in the last few weeks about guardianship of the kids and Social Security.   Please understand that guardianship rules are different from state to state and sometimes, from county to county, so know that this is what our journey looked like – this is in no way what yours may look like.  Consult an attorney that knows family law in your community for the best advice.

First things first.  When your child turns 18 ( or graduates from high school in some areas) they become an “adult” and are legally responsible for themselves.  You will no longer have a say in medical treatments or other decisions for your child.  Sometimes, a doctor may still look to you for advice on helping your child, but legally, that shouldn’t happen.

Being a guardian simply means that you can continue to make medical and financial decisions for your child.  There are different types of guardianship – person, estate and person and estate.  I have full guardianship for both kids as neither of them is capable of making the best medical or financial decisions for themselves.  To become a guardian, you must apply through your local courts.

It is not a simple process and even though you can do it on your own, I would strongly advise talking to an attorney.   I had an attorney for Casey’s and I hired the same one to help with Rob’s.  I knew what to expect and what I needed to do, but it was a relief to me to know that someone who knew exactly what to do was handling it.  My kids’ are more important than the few hundred dollars I spent to have an attorney help me.

There was never any question that I would need to be their guardian when they got older.  They took medicine willingly, but couldn’t tell me why or what it was.  They could finally tell me when they needed to see our doctor, but had no idea how to get an appointment.  Your child won’t be like mine, so you need to consider what type of guardianship you need.

Casey and Rob have no interest in money (except having three quarters every morning when they head off to work!) so I filed for full guardianship for both.  I can legally make medical and financial decisions for them.  I know several people who have only person guardianship, which means they can make medical decisions for their child, while the person with autism makes their own financial decisions.

I was surprised at how different Rob’s process was from Casey’s.  It had only been four years but it seemed so much easier.  We had a different judge for his (and this judge also amended Casey’s to be just like his) but I’m not sure that was the reason.  Casey had to go to court with me for hers (and she did amazing!) but Rob didn’t have to go (and that’s a good thing!  Though, I’m sure when the judge saw the way he behaved, there would be little doubt as to his disability!).

Does your child understand their diagnosis?  Can they choose what medicines to take or tell you why they take them?  Do they understand how money works or how to pay bills?  There are lists of questions online that may help you determine whether your child needs a guardian.  Honestly, their guardian doesn’t have to be a parent.  It can be anyone who wants to help them make decisions.

When you decide to become your child’s guardian, start gathering as much information as you can (this is a great idea, anyway, as you will need it to help them apply for Social Security).  Hopefully, you have a file with all doctor reports, school reports and any other information that may have been gathered about your child.  The more information you have about your child’s abilities, the easier it will be to apply for both Social Security and guardianship.

While you can apply for Social Security online, you will more than likely  have to appear in court for guardianship.  I can’t tell you which would be easier to apply for first – I’m not sure it makes much difference.  That would be a good question for your lawyer.

Expect to have some frustrations when applying for Social Security.  I don’t remember having trouble with either Casey or Rob, but I’ve heard stories from parents who are going through the process now.  I have no idea why it has to be so difficult – autism isn’t going to go away, so to me, the diagnosis should be enough.  But, unfortunately, the powers in charge didn’t ask for my opinion.  Just stick with it and count every step forward as a win!

It does take a few months to get approved for Social Security, but when your child does get it, it will be granted from the day you applied, not the date it is approved.  So don’t waste a lot of time before helping your child start the process.  Remember that if your child has any other type of income, that income must be reported to the SSA at the beginning of every month.

If you are guardian of your child’s estate, make sure you keep accurate records of where you spend the money.  You may need to make a report to the court every year (and even if you don’t have to include a financial report, you will have to file a guardian’s report every year.  It’s a really simple form, basically asking where the person lives and how often you see him/her)  One piece of advice – when you initially file for guardianship and you need a doctor to sign a form, ask the doctor to mark that this condition will not change.

In our county, this means you won’t have to have a doctor sign a form every year.  Again, you can ask your court officer if that’s possible.  I’m constantly shocked at how different the process is for different areas.  Remember to ask your local court all of your questions – I’m just sharing how I did it.

Choosing to be a guardian isn’t always easy.  You don’t want to take away your adult child’s right to make decisions on their own, but you have to keep them safe.  If you aren’t your child’s guardian, someone could take advantage of them – sell them a car or have them sign a loan paper.  And you won’t have much to say about it.  It’s scary and sad how many  people are looking for people with disabilities to take advantage of.

Be aware that when you file for guardianship, you will be checked, too.  Expect a background check, even if you are the parent.  The court is looking out for your child’s best interest and sometimes, the parent isn’t the best choice.  You may also have to buy bond insurance so if you decide to run off with your child’s estate, the insurance will reimburse your child.  Don’t be offended – you know you only want what’s best for your child, but again, some parents don’t feel that way.

Filing for guardianship is a big decision for some parents.  I know it’s hard to feel like you are taking something away from your child, but in reality, you are protecting them.  I advise you to find a local attorney who is very familiar with family law and discuss your concerns with him/her.  That’s the best place to get the answers you and your child need.

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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 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.