Month: February 2018

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Autism, Ear Infection and More Mom Guilt

Autism, Ear Infection and Mom Guilt

It happened again this week – another huge case of autism mom guilt.  And another day that the communication problems that autism causes has hurt one of my kids.

Ever since I was sick a few weeks ago, I’ve been watching the kids closely.  As bad as influenza is going around, I thought there was little chance that one or both of them wouldn’t get it.  But, days passed and they both seemed fine, so I started to worry less.

I was a little concerned about Rob.  He didn’t seem quite like himself, but he never said “hurt” or “Let me see” so I tried not to hover over him too much.  He was eating and sleeping – but his eyes looked funny.  I just had a gut feeling something was up, but he still wouldn’t say anything.

So, I waited.  He went to camp and had a great time.  He came home from the workshop on Monday and said “hurt” and pointed to his ear.  Ok – now we are getting somewhere.  I asked if he needed to see Dr. Myers, but he said “no fanks” and ran back to his room.  If his ear was hurting, it didn’t seem to be bothering him too much.

He didn’t mention his ear again until Thursday.  By then, I knew he was in pain and that it must be bad.  Rob has an extremely high tolerance for pain, so when he finally says something hurts, it’s bad.  Of course, by the time he mentioned it, the doctor was closed for the day and we had to wait.

When he saw the doctor Friday morning, he tipped his head to him (showing him the hurt ear) and said “hurt.”  He had a slight fever and he wanted to sleep.  The doctor said the infection was so bad in that ear that the ear canal was swollen and he couldn’t see the ear drum.  I felt like someone had punched me.

The doctor was concerned his ear drum may have burst.  Rob looked so sad and I was ready to cry.  I truly do know that it’s impossible for me (or any of us) to always knows what’s going on with our non-verbal kids, but the guilt I felt was so strong.  I knew for days something was up with him – why did I wait so long to take him to the doctor?

I have all sorts of excuses.  I thought maybe he had a touch of the flu (my ears hurt terribly!).  He didn’t have a fever (or at least not one high enough I noticed) but his eyes did look off.  He didn’t want to go (when he was little, he saw doctors so often that he cried as soon as we got near an office.  It wasn’t until a few years ago that he and Casey started telling me they needed to see Dr. Myers.) so I thought I’d wait until he told me he needed to go.

None of that matters, though.  The only thing that mattered to me was he was hurting and how to help.  He got meds and ear drops.  I wondered how easily he would let me put drops in the sore ear, but he must have understood when the doctor said they would help because he tilts his head as soon as I mention the drops and he keeps his head tilted for a few minutes to let them get into his ear.

He is taking his medicine without issue.  It’s only been a few days, but I was hoping for more improvement than I’ve seen.  He is talking a little more, but he wants to lay on his bed and not rip paper or play with his iPad.  He hasn’t said anything about his ear.

Truly, I feel like the difficulty we have in communication is the worst part of autism.  The sensory issues are tough at times, but we adapt.  The constant need for the same things in the same way gets old, but we are handling it.  But – when they can’t tell me when they are hurt, it hurts us all.

Even now, he can’t tell me if he is feeling a little better and I can’t tell.  I’m supposed to take him back to the doctor tomorrow if there isn’t any improvement, but how can I tell?  It’s just a guessing game – and this one involves his health and is important.

He has a communication program on his iPad so I tried to get him to answer me with that.  He pushes the off button and covers his head with a blanket.  The last time I went to check on him, he said “Good bye, Mommy Jen”  (translation – get out of my room and leave me alone!)  So I’ll wait and see and hope for a sign that he’s better before tomorrow morning when I have to decide about calling the doctor.

Autism and mom/dad guilt seem to go hand in hand.  I know I feel like I should be able to know everything about the kids – even as my head says that isn’t possible.  My heart argues that a mom who truly knows her kids would know when they are sick or when something is wrong.  I’m tired of the guilt.  I’m tired of trying to out-think autism.

Do me a favor and take my advice.  Do what I’m trying to do today.  Let go of the guilt – it makes you second guess everything until you don’t really know what you are seeing/feeling. Every parent makes mistakes – even the ones whose children are able to communicate.  Don’t let autism make you think that you aren’t an awesome parent, because you are!

 

 

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Autism – High Highs and Low Lows in the Same Day

Autism - Highs and Lows

Anyone who knows autism knows that we can have the highest highs and the lowest lows, often within a few minutes of each other.  I had a day like that last week.

I’ve shared before that Rob is a picky eater.  While he is willing to try many new foods now, he doesn’t voluntarily do it.  On this morning, he was ready for work and looked in the refrigerator.  He grabbed a container of canned pineapple and wanted some.  He loves fresh fruit but refuses to touch anything canned.  I think the syrup is too gooey for him.

Anyway, he was insistent that he wanted the pineapple, so I got a fork, stabbed a piece and handed it to him.  I knew he would refuse to take it, but I was happy he was at least willing to look at it.  To my shock, he grabbed the fork, ate the pineapple and wanted more.  I couldn’t get a bowl for him quick enough!

This mom was over the moon and sky high!  He voluntarily tried a new food – a syrupy food!  If he would have had more time, I would have let him eat the whole container, just to watch him.  I have something else I can pack in his lunch – what an awesome way to start our day!

He had no idea why I was so excited and looked at me like I was  crazy, but he did grin as he left and said “pineapple.”  This was huge and I let everyone know what had happened that morning.

Later that evening, the kids had a dance to go to.  They were both excited.  Casey loves to “dance” while he likes to lay and watch the lights spinning and flashing on the ceiling.  When the music started, we danced “The Twist” together and then Rob and I went to sit while she stood at the edge of the crowd and swayed to the music.

Usually, I try to get Rob to get up and dance more, but I was so tired that night (still trying to get my energy back after being so sick!) that I just sat and watched Casey and the other dancers.

And then it hit me.  This wave of intense sadness.  I saw so many other people her age and they were dancing and laughing with friends – and she was off by herself.  I wanted so badly to see her out in the group, laughing with friends and being silly.  I knew she was happy where she was.  I knew she didn’t care to be in the middle of a crowd.

But it just made me think about all the things that they will probably never do.  Things that I take for granted.  Most days, I don’t think much about it  as I know the kids are happy.  They get to do most of the things they want to do – and what they don’t do is more because mom says no, than their autism.  They go places with friends and staff from  the workshop.

I know all of this, but at that moment, I just wanted to cry.  What if Casey wanted to be in the crowd but didn’t know how?  What if Rob wanted to go sit at a table with the guys and not sit on the bleachers with me?  The thoughts just wouldn’t stop coming.  I just wanted to go home.

These highs and lows are part of what makes autism so exhausting at times.  The range of emotions we feel during the day can swing like a huge pendulum.  Add to that every day concerns about work and groceries and families and household matters.  There are days when I’m so tired when I wake up that I actually think about how long it will be before I can go to bed.

Luckily, most of our days are pretty mellow anymore.  Or, I’ve gotten so used to the circus that I don’t notice the craziness (and this is a distinct possibility!) or the noise.  We don’t have too many super lows (knock on wood!) right now.  I’m always wondering when the next lows will hit, but I try not to think about it too much.  Why ruin a good day by worrying about what might not happen?

I just heard from a mom a few days ago on our Facebook page  (check it out, if you haven’t had a chance, yet.  I try to post every day!) who wanted to thank me for not writing “rainbows and unicorns” about autism.  She liked that I was raw and honest about our lives.  A true high for that day!  When I started this blog and our page, I promised myself that while certain private details about the kids would stay private, I wanted everyone to understand that autism isn’t terrible.

It’s hard and it’s easy some days.  It’s exhausting and exhilarating.  It’s brought so many new friends to our lives and taught me so much.  It makes me laugh and cry and get angry.  When Casey was diagnosed, the books I read were “My child was cured” books or “Your child will never….” books.  Where were the books that said  it was ok for me to be tired?  Where were the parents who got fed up with OCD?  Was I the only one?

So I promise to share our highs and lows with you so you know it’s ok to feel however you feel.  Be happy, be tired, feel guilty, be relieved, be angry, be irritable, be whatever you need to be.  And if you need someone to talk to, message me.

 

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Autism and Our Very Own Personal Rules

Autism and our Very Own Personal Rules

My parents and I were laughing yesterday about the details that are left out of the kids’ ISP’s.  These plans are supposed to make it possible for anyone to come into our home and know what to do with the kids and how to deal with their autism, in the event that someone who knows them is unavailable.

I was actually thinking about this last week as I battled the flu.  As I kept hearing about people being admitted to the hospital with it and my fever kept going higher, I worried about the kids if I had to be gone a few days, unexpectedly.  I know it’s silly, as I have any number of people who would be here to take care of the kids, but still – I wondered.

Their ISP’s are good, but if I had to list everything that people would need to know, the plans would be 100 pages long and still not complete.  I can’t still here right now and think about all the little details that we live by because of the autism, but I thought I’d share a few and see what silly, but so desperately important, rules you live by in your home.

#1.  Waffles are eaten in sets of 5 – 2 for Casey and 3 for Rob.  She refuses to eat more than 2 because there is only room for 2 in the toaster.  He wants 3 because….  well, I have no idea why, but he eats them in 3’s.  And they can’t be cooked – he takes them right from the freezer and eats.  Never add anything to his – only pancakes get syrup!

#2. Casey takes baths and Rob takes showers – and never, ever say the wrong one!  They will both emphatically correct you if you ask Casey to take a shower or Rob to take a bath.  Casey always goes first.  Her hair can only be dried at Grandma and Grandpa’s house, unless she is going somewhere special.  Only then am I allowed to use a hair dryer near her.  Snacks and pills should be waiting as they come out of the bathroom.

#3. Different shaped pretzels of the same brand can’t be eaten.  Rob will eat the nuggets and the long rods of one brand, but only the midgets of another.  And what he eats at home can’t always be eaten at Mandy’s house.

#4.  Casey will not bring her coat from her room until her shoes are on.  She will make 3 or 4 trips up the stairs and never bring her coat until it is time to put it on.  And once she puts it on, she won’t take it off (including hat and gloves) until she leaves.  Even when her ride is running late, she refuses to take it off.  She also has to sit in a certain spot on the love seat to wait till her ride comes.

#5.  Certain clothes have to be worn together.  I’m such a terrible mom that I washed Rob’s wind pants last week and not the t-shirts that have to be worn with them.  Poor guy had a stressful night until his red Coca-Cola shirt got washed the next morning and could be worn with the right pair of black wind pants.

#6.  Rob’s TV can only have HGTV on it.  Even if his favorite movie is on another channel, if you change the channel, he yells and changes it back.

#7. Casey has “after work before bath” slippers, “after bath before bed” slippers, “Saturday afternoon before bath” slippers, “Sunday afternoon before bath” slippers and “snow day” slippers.  Never try to give her the wrong slippers.  And don’t try to understand her system.

#8. She won’t eat leftovers.  Even if the food is still on the kitchen counter, but has been put into containers to be saved, it’s leftover and she won’t touch it.  She remembers what we’ve had to eat, so even if I put leftovers in a pan to warm it up, she refuses to eat it.

#9. When they are going to work in the morning or going with their dad, they have to come and go through the front door.  Any other time, they use the back door.

#10. They both need fans, night lights and a huge pile of blankets to go to sleep at home, but anywhere else, they don’t need it all.

This is just a few of the things we do every day without even thinking about it.  What unwritten autism rules do you have at your house?  I’d love to hear about them!