I've Had People Say.....

I have not updated in a while but I was thinking about the times I've told someone my son has Asperger's and how they have reacted. 

I've had people say, "I am so sorry!"

Sorry?  If you've said this before don't feel bad.  It comes from a good place in your heart.... I hope.  Saying you are sorry is like saying "poor you to be stuck with that kid" or "poor kid he will never be all right."  But I am not sorry.  He is the same boy whether or not there is a diagnosis attached to him.  Don't be sorry.  Be understanding.

I've had people say, "Really?  Are you sure?"

Ummm....yea... I am sure.  This reaction usually comes from people who have not spent much time with Nathan.  They have seen him on his good days and on his best behavior.  This comment does not offend me,  It reminds me that four years of Social Groups, Physical Therapy, and Occupational Therapy are working.  But some do get offended by this statement.  I've heard parents say it sounds like you are doubting what they know and they wish you could see the hard days, the tantrums, the stubbornness, the gagging at smells, the loud sounds, the shutting down moments.......  Yes....we are sure.

I've had people say, "My kid does those things too.  It's normal for boys."

This statement probably also comes from a good place in your heart and hopefully an honest place.  Hopefully you are trying to connect and be sympathetic and kind.  It does not offend me.  In fact it's nice to hear that my kid is "normal."  But I can tell you others find it offensive.  Why?   You are implying that maybe it's a misdiagnosis, over diagnosis, or just not that bad. So just be careful with that one.  Maybe say, "My child does some things similar to that at times."  Or just nod because maybe the mom needs to vent to you for a bit and just wants a listening ear.

I've had people say, "What is Asperger's?"

This is not at all offensive and should not be to anyone.  My opinion is just because you have had to become an expert on a topic such as autism and Asperger's does not mean the rest of the world has had to.  So educate yourself and be prepared to educate others in a kind way. 

I've had people give me the look. 

You know what I mean. That look that says, "Why is your son acting that way?"  "Isn't he too old to be doing that?"  "Why can't you control your kid?"  "He needs better discipline."  Yea....that look.   When Nathan was four he talked like an adult.  He spouted off the Presidents names, first, middle, and last like a party trick and people loved it.  He talked about soil erosion and history.  So people thought he should act like an adult too.  So when he acted like a four year sometimes acts then people give you the look.  Because of his obsessive personality he would do things that would make people look.  I don't mind people looking but not if they are giving "the look."  You know what I mean.

I've had people be downright rude.

"How old is your son?" 
"He is eight."
"Really?" said in the most nastiest way you can imagine. 
This happened when Nathan was at the park having a fit on his bike.  He was crying because he couldn't keep up with the  other kids.  And this woman was wanting me to tell him to "stop" or "be a man" or "don't be a cry baby" or something.  According to her my son was not acting his age.  According to her my son wasn't doing or behaving the way she thought he should.  Now, there are plenty of times when I have dealt with this and will explain to the person, "He  has Aspergers.  It's hard for him." But if you are being mean and nasty and thinking your two girls with their perfectly done hair eating cherries like candy are the epitome of your perfect parenting style and my son crying on his bike is not... then you get no explanation.  I'd rather go comfort and encourage my son than waste my time trying to change your mind.  Sorry.  Rude?  Maybe?  Or just the truth.....

I've had people step away.

I was talking with a woman in Target close to Christmas.  She was looking  at Imaginext toys.  Nathan's favorite.  He was not with me.  Shopping alone!  A mini vacation!  :)  She looked confused as she browsed the toys.  I asked if I could help.  She told me what her son wanted, a castle with a orange door.  I said, "It's this castle.  I know them all.  My son loves these."
"How old is your son?" she asked me cheerfully as she grabbed the castle from the shelf.
"He is eight." 
"What else does he play with?" she asked. 
"Not too much else.  He loves Imaginext toys."
She smiled.  "Really?  But like what other toys?  I need ideas for my son."
I shrugged.  I was enjoying my conversation with her.  She was so friendly and so I thought I'll just open up a bit.  "He pretty much plays with Imaginext and maybe a few action figures.  He has Aspergers so his interest are limited."
Her face changed then and I am not lying when I say  she took a step back as if she might catch a disease.  "Oh," she said and then grabbed her cart and hurried away!  I was shocked!  Her whole face went from friendly to scared in a matter of  minutes like just being near me might infect her. 
Ignorance!

And I've  had people be kind to me and Nathan and their children be kind. 

So what is the right reaction?

If you don't know then ask questions.  How did you know? How was he diagnosed?  How does he do in school? 
If you don't know what to say then maybe keep quiet or ask the mom or dad how they are doing.  Some days are rough! 
If you want to comfort then comfort but most of us don't need comfort.  We want you to just understand and help your children, grandchildren, nieces and nephews understand and to be taught kindness. 
Ask how you can help? 
Sometimes we have a lot of appointments and places and therapies and it can help to watch other kids or to even offer to go with the mom or dad to some of the appointments.
Be a friend.  Sometimes we have to be hard on our kids or always on them to try and prevent  meltdowns.
Warn us.  People with Aspergers like a plan and they liked to know what will happen.  So let us in on details for a play date before it occurs so we can prep.   
Treat our children like normal children.  Just have a little extra patience and kindness.
Be a friend.  Encourage your children to be a friend.   

  

Go AWAY!

Tomorrow a woman named Nikki will come to our home and tell us what the psychiatrist thinks about Nathan.  This should be a old hat to us.  It will be the third time we have done this. 

Part of me feels like just being done with it all!  Maybe I don't need to hear what she has to say.  Maybe I don't want to know what that psychiatrist thinks about my little guy.  Maybe I think we are doing just fine by Nathan. 

But the other part of me says, "We need help!"  There are days when Nathan does fine and he seems like any typical five year old.  There are others days when we feel like we just don't "get him" and his strange way of thinking. 

He is our little nutty professor.  He can talk about things that most twenty year oldsdon't know and memorize huge amounts of information.  But then he can't figure out simple things.  He lacks common sense.  He gets so easily frustrated and wants to give up on everything!  He gets so anxious.  We want help with that.  We want him to cope with these frustrations he feels.  We don't want him to end up in tears several times a day about "small" things.

So we trudge forward. 

I am not nervous about tomorrow.  I am weary thinking about tomorrow. 

We want what is best for Nathan.  We want to help.  We do not want to over-diagnose.  We don't want to force him into a cookie cutter shape of what someone else things he should be. 

Tell me how to help him when he is surrounded by people and he shuts down or panics or just cries.  Tell me how to help him have fun at events.  Tell me how to teach him to cope better with his many frustrations.  But don't tell me how to raise him. 

All I can say is, "Bring it on."

Observations

Time for an update!

As you know Nathan had gone to Creative Services for an eval and today I finally got a call back!

Unfortunately she did not have his papers in front of her and still could not tell me what the psychiatrist said! Grr.  But she said there was a definite diagnosis but she couldn't remember what is was! Go figure.

Anyways, Tuesday, a woman named Nikki will come to the house, (yay for not using gas to go somewhere!) and talk to me and go over the eval and gather information.  Next she was observe Nathan at home and at school and gather data.  After that she can tell us what services he would need. 

Please also remember to hold up in prayer those who really need it right now!  Terri Blount, mother to ten, battling cancer.  Trey Love, who is so sick from his chemo.  He has been throwing up and his parents have had to re-insert his tube down his poor little throat.  Ning Tan, who has made some progress.  And so many others! 

A Day in the Life of Aspergers

When people find out Nathan has Aspergers we get a wide range of replies.




“Are you sure?”



“What is it?”



“But he is so smart!”



“But he seems just fine!”



Aspergers is a funny thing because it does not affect the way Nathan looks and we have days where it does not affect the way he behaves.



But then there are days like yesterday and today where living with Aspergers is more real, more evident, and definitely harder to deal with.



Yesterday was a gorgeous day and the sun was shining. We went to a Healthy Lifestyles Expo. Anyone who knows us knows this thing is true: The Tidball’s love a good deal and we love FREE! They serve a healthy (free!) lunch at the Expo and have vendors that give away chocolate and cookies, pens, notepads, reusable shopping bags, and magnets. Nathan did pretty well but being around crowds tends to make him anxious. He does not worry or fret but he gets upset and whiny and we know he is uncomfortable. We didn’t stay too long and Nathan did well.



You have to keep constant vigil on him because he has a tendency to wander off or to daydream and not follow where we are going.



This morning started off with a tantrum. Chris made breakfast and announced he was making fried eggs. Nathan thought this meant eggs with French fries so he freaked out and ran to his room and cried for a good long time. We couldn’t calm him down until I said, “Nathan, calm down and come eat or you can’t come with us to the egg hunt today.”



He complied but only ate parts of his egg. He said, “This part of my egg is hard and I am not eating it!”



Chris said, “It’s not hard. That’s bologna!”



Nathan, always literal, replied, “No. I said it’s a hard egg not bologna, dad.”



Next we went to Branch Creek community church for an Easter Egg hunt. This place is huge! There were so many people there. They had everything indoors due to the rain. Everything indoors was great to avoid the rain but a nightmare for Nathan who was being bumped and crowded at every turn. It took about ten minutes for Nathan to get agitated. He began to whine and cry and moan and complain. Chris asked him, “What is bothering you?”



Nathan said all the people and the noise were bothering him. Before his diagnosis we would have thought he was being cranky and whiney and not having fun. It would have frustrated us as parents as well.



Now we understand. Now we “get” it.

Chris kept him close and held his hand and I rubbed his head. He likes when I rub his head. Nathan asked to leave several times but it wouldn’t have been fair to Emma to miss out on all the fun.



Nathan did break down in tears but we calmed him down and got him to stop by telling him if he wanted his face painted he had to stop or else they wouldn’t be able to paint his face. He stopped and let them paint his face.

We didn’t stay much longer but the time we did stay was spent trying to keep him calm and reassure him that he was going to be all right.



Most of our time spent at activities and family outings are spent keeping Nathan calm and in line and trying to avoid tears and tantrums. Sometimes it works and sometimes like today he is just overwhelmed and you have to deal with his breakdowns as they come.

Emma had a great time and patiently waited in lines and played the games and helped herself to plenty of candy. She high-fived the Easter bunny and held hands when she was supposed to.



Chris and I often question whether or not we should take Nathan to these sorts of things. He always ends up frustrated, upset, and anxious, and pretty much always ends up in tears.



But when we ask him if he had fun he says he did….. sometimes I think Nathan does have fun but gets easily overwhelmed. Sometimes I think it’s less fun for Chris and I as we constantly deal with having to keep him calm, talk him through situations, and comfort him when the tears come.



We have also realized that Nathan finds electronics soothing. Whether that means letting him play on his computer, play his V-Smile, or even watch TV. That is how he decompresses. And after a day like today I think we all need a little decompressing.

After the egg hunt we went to Nana's for lunch and a visit.