Tag: autism and families

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Autism and the Difficulties in Speaking

Autism Verbal Difficulties

It happened again.  A day that could have been so much fun for Rob was ruined, simply because he couldn’t ask for help when he needed it.  As much as he is able to talk, there are times when his autism and the verbal difficulty he has flare up and he gets frustrated.

Rob and Casey were going swimming with friends from Hopewell – the workshop they attend every day.  I was already a little concerned because they were going to a different pool – one that was just a pool and had none of the activities that Rob really enjoys (mushroom fountains are his absolute love – all the water pouring directly on his head is heaven to him!)

He was so excited to think about going swimming.  I’m sure he was a little disappointed that it was a new pool, but he jumped right in the pool.  Staff told me he got right back out and soon began pacing and yelling.  Tory tried to help him, but he was unable to tell her what he wanted or needed.  He wouldn’t even talk to Casey.

I got a message that he was upset and decided to go get him.  I didn’t want his anxiety to ruin the fun for the others in the group.  When I got to him, he started asking “get the van?  get the van?” so I knew his anxiety was sky high and not likely to come down any time soon.  He didn’t want to leave with me, but he didn’t want to go in the water, either.  I think he probably did want to swim, but since he wouldn’t, I told him to grab his stuff and we would just go home.

As we were driving home, Rob had his hand laying on the open window of the car.  That’s the only way I knew what really happened to him at the pool.  I saw the bee sting.  When I could pull over, I asked him to show me his hand.  “Let me see!  Let me see!” he said and held his hand out to me.  When Rob is sick or hurting, that is how he asks for help.

The stinger was out, but the hand was red and slightly swollen.  I noticed he sounded congested when I picked up him, but thought he was having sinus issues.  Nope – he was having a reaction to the sting.  He and Mandy used to be severely allergic to insects, but he hadn’t had a reaction in a long time.  He had gotten stung at the pool and he simply couldn’t tell Tory he needed help.

Instead, the pain got him worked up and he paced.  And he yelled.  And his anxiety grew.  All because of autism and verbal difficulty.  Can you imagine being in pain and not being able to tell anyone?  Not being able to ask for help?  Imagine the frustration and anxiety you would feel.  And I hated autism again for ruining his fun.

Had he been with Mandy or I, he probably would have said “Let me see” and we would have known something was wrong.  He just won’t (or can’t) say that to others.  So, because of autism, he suffered.  And I thought about the other times he was unable to ask for help when he needed it.  When he jumped down the steps and broke his collar bone.  When his foot issues start to flare up (if I can get ibuprofen in him early enough, the pain doesn’t get too bad).  When his head hurts.  And I think it just isn’t fair!

I know – life isn’t fair.  But it’s so hard to watch someone you love in pain because of verbal difficulties.  He can say so much of what he needs, but not always.  Sometimes, he just yells and gets anxious.  Sometimes, he cries.  Sometimes, Casey screams.  And I’m left trying to read their minds and find the issue.

Autism has taught me so much.  I am a better person for loving kids with autism.  I have met so many amazing people and learned about myself.  Autism has also taken things from me.  For me, the worse thing taken is the kids being unable to ask for help.  When I do finally realize the problem, the guilt comes.

Why didn’t I figure that out quicker?  How could I not realize they are in pain?   My parents tell me that’s crazy – it’s impossible for me to know everything about them.  My head understands that – my heart feels the guilt.  And you know guilt is harder to get rid of.

I’ve learned to “read” them – just as every other autism parents has learned.  I can tell by their eyes if something is wrong, if they are sick, if a tantrum is coming.  I can tell when they are happy or sad or mad.  I can see Rob’s anxiety and when Casey is getting overwhelmed.  I know all of this, but I still feel guilt when I don’t know it soon enough.

Thankfully, Rob’s hand is fine.  While he did cough a little, he didn’t have a bad reaction to the sting.  He will probably never go back to that pool as he will always associate it with a bee sting.  But, that’s ok.  We’ll go somewhere else.  Casey will be happy going anywhere.

We’ll always struggle with verbal difficulties.  I will be thankful for what they are able to tell me.  I will keep asking questions and hope to learn more about each of them.  We’ll keep hugging and laughing.  I’ll read stories to them and enjoy the giggles when Elmo saves the day again.  That’s what parents do.

And I’ll try to push the guilt away when I don’t know what’s wrong.  I’ll try to remember the good things about autism when I’m so sick of it I could scream.  Try to do the same.  Life isn’t always about bee stings and ruined pool trips.  Sometimes, it’s bear hugs and twinkling eyes and McDonald’s fries.

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Grandma, Grandpa and Kids with Special Needs

Grandparents and Special Needs Children

As parents, we worry all of the time about our kids.  We worry about their health, their education, their friends.  When you have a child with special needs, those worries don’t necessarily increase, but they do change.  But what if it’s your grandchildren?  The worries are doubled because you are worrying about your children and your grandchildren.

In some families, grandparents know how to “fix” the child with autism.  As scary as it sounds, the old fashioned theory is that autism can be spanked out of a child.  If the parents would just use firmer discipline or give the child a good old fashioned spanking, the autism would be gone.  There are still a few of these people around – I’ve met them.

Often, people with this attitude are older and grew up a long time before there were special education classes.  In those days, children who were different were kept home or institutionalized.  Just because I can justify why they might think discipline will “fix” a child doesn’t mean I agree with it at all.

One of my grandmas passed away before Casey was born.  My other grandparents were in their late 80’s before she came.  While both of them loved and doted on her, Grandpa and Casey had a special relationship.  Even when she couldn’t talk to him, he sat and cuddled with her or made faces at her in a mirror to make her laugh.  When we got the diagnosis of autism, he said it didn’t matter.  To be honest, I wasn’t sure Grandpa knew what a diagnosis of autism meant (like I knew, either!) but he still saw the beautiful little girl he loved, not that something was “wrong” with her.  I remember talking to Grandma one day about autism and wondering what I was going to do.  She smiled at me and said, “Jennifer, you are going to love her.”

Simple words – and so much truth!  When the bad days happen and you feel like you can’t handle autism anymore, there are only two things you need to do – take slow, deep breaths and love your child.  One small step at a time, your day will get better.  Sometimes, the blackest days are just before blue skies.

I’ve often wondered how my parents handle having special needs grandkids.  Of their 5 grandchildren, two have autism and one has cerebral palsy.  So they worry about Casey, Rob and Lacey, (and Mandy and Anna!) but I know that they worry about my brother, Jeff, and me is just as strong.  I tell them not to worry, but it doesn’t matter.  That’s what parents do, after all.

I don’t want to think about the number of times that I’ve called them and was crying so hard that I couldn’t talk.  I know how desperately worried I was when Mandy called from Texas crying – I can’t imagine living with the constant worry my parents do.  When I needed to talk to mom or dad, I would try so hard to calm down before I called, but just the sound of their voice would make me cry again.  Sometimes, you just need to hear mom and dad’s voice, you know!

Whether I called because I was angry about services or insurance or schools or just because I was so tired I couldn’t think straight, mom and dad listened until no more words would come.  They couldn’t fix anything.  All they could do was love me and let me cry.  I hate seeing my kids cry – the pain of watching your children and grandchildren must be a hundred times worse.

My parents are also great at making me stop and consider just how bad things really are.  Many times, after talking to them, I am calm enough to realize that the “most terrible day ever” will be funny in a few days… or weeks… or maybe never, but the day will end.  Their faith is strong enough for all of us.

Of course, some of my “emergencies” made them laugh – after making sure we were all ok.  I remember one call I made – poor dad happened to answer the phone.  When the kids were little, I enjoyed entering baked goods in our county fair and had just made the most beautiful peach pie you can imagine.  I was so excited – I knew I had a real chance at a ribbon.  I sat the pie on the cooling rack and went to the bathroom – and Casey cut the pie!   I was so mad (she didn’t even like peach pie!) and then so upset because I couldn’t make another one.  So I did what I always do – call mom and dad.  I’m sure Dad thought someone had died because I was crying so hard.  When he heard that all I wanted was a can of peaches, I’m sure he wanted to reach through the phone and smack me for scaring them, but instead, he did what my parents always do – he brought me what I needed.

I know that my kids have come as far as they have because, even when I wanted to give up, my parents wouldn’t let me.  They gave me strength when I didn’t have any – and a kick in the butt, if I needed that.  I wish all kids had grandparents who did this, but I know it isn’t always possible.  If your kids have grandparents that can’t love them unconditionally, it’s up to you to protect your kids from their negativity.  It won’t be easy, but your parents don’t need your protection – your kids do.  Life is hard enough without feeling as though they aren’t good enough for their grandparents.

As parents, we may have had to change the dreams we had for our special needs kids, but we still dream for them. Maybe some grandparents need time to change their dreams, too.  My dreams are simpler now – even for Mandy.  I dream for them a life that makes them happy, a circle of support that love them as much as I do and a faith strong enough to withstand the crap that the world tosses at us at times.