Month: July 2018

Posted on

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!  🙂

 

Posted on

Home from Camp – Back to our Normal

Home from Camp - Back to Normal

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

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

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

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

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

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

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

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

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

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

Posted on

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.  💙💙💙💙

 

 

Posted on

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!)

Posted on

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.