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Ben Sorby

A way to keep our family and friends up to date on Ben's medical journey for a diagnosis.

Latest journal entry

Autism Awareness

Well, this isn't so much an update on Ben, but more of a "mom post".  :-)  I've had a lot on my mind lately as I read other ASD and special needs parent's posts and blogs.  This way of life is becoming so much more common, but I still feel like we, as a society, are still in denial about it and don't know who to relate to a parent in this situation.

Ok......

I want to apologize to every ASD parent that has gone before me.  It's not that I never believed autism was a thing, but I was seriously tired of hearing about it.  "Great, autism awareness month....AGAIN.  Can't you just parent your kid better or get them outside more to play?  Maybe if you don't give in to everything they want, they won't have meltdowns all the time.  Why don't you ever leave your house?  It's ridiculous to let one kid run your household.  Why do you post about it so much on Facebook?  Are you just trying to get attention?"  Seriously...these are all things that I have thought at one time or another, and for that, I'm sorry.  Oh, was I ever uneducated on the topic!  Autism is neurological!  Ben can't control his outbursts and meltdowns.  Discipline won't "fix" this.  I don't always give in to his wants, but sometimes, what seems like a want to me, is a need for him.  I can't leave my house or go do things, because I don't know how Ben is going to react and, quite frankly, it makes me tired to always be on edge.  I don't know if he'll have a meltdown and I don't know what his behaviors will be, so it's just easier to stay home.  And attention?  Well, yes.  I AM looking for attention, but not for me.  I want attention for autism awareness.  I want awareness for Benny.  I've had people ask me why I always tell people that he has autism.  First of all, autism looks different for every kiddo.  I want you to know that although he might not "look like" a kid you know with autism, he still has struggles and this is why he is acting a certain way.  Secondly, I think people still think like I used to.  I want to put a face to this disorder.  We are just like you.  We NEVER expected to have a kid like Ben.  It was always, "too bad for that family.  Thank goodness we aren't going through that."  Do you know that 1 in 60 some kids (many boys) has autism these days?  Tomorrow could be the day that this becomes a personal matter for you.

Yesterday, I took all 4 boys grocery shopping.  This is not unusual for me/us.  I do this alone all the time.  As long as Ben has a place in the cart, or his own cart and is strapped in (oh my goodness....squirmy Sammy too!), things are good.  Many times Ben has a cart (because he likes/needs to sit up front) and Sam has a cart.  I push one and Jack pushes the other.  This is actually one of the few things we do that doesn't give me anxiety.  We have our routine and we must stick to it.  Yesterday was just not one of Ben's good days.  As soon as I got him out of the cart, he was running in the parking lot, across the street, and straight for the door.  I couldn't chase after him, because I was in the middle of getting Sam out of his car seat and I'm just not as fast as I used to be.  He did this at every store we went to and (by the grace of God) he wasn't hit by a car.  Once we got in stores, he was pulling everything off the shelves, opening things that were already in the cart, throwing things on the ground, climbing out of the cart, and running away from me.  I handled it the way I normally do and,somehow :-), we made it through the stores.  But something struck me yesterday - the looks from others.  I ALWAYS get comments from well meaning individuals.  "4 boys?!  Oh my you have your hands full!"  "How do you do it?"  "I wouldn't be able to do that."  Yesterday was the first time I started noticing the dirty looks.  Ben is no longer a baby, where some of that behavior is expected and somewhat acceptable. He's 4 now and, while 4 year olds can still be wild (ahem - I think we're headed in that direction with Mr. Sam!), it's becoming more noticeable to people.  Normally, I could care less what people think of me or my kids, but yesterday I was annoyed.  I wanted to scream, "HE HAS AUTISM" to the couple in the parked car next to me, who kept sending dirty looks my way while clearly chatting with each other about me/us, as they watched me struggle to climb through and around in the vehicle to grab Ben (who had climbed in the front seat) and listened to him scream as I dragged him out.  On the way home, it dawned on me.  Many people have heard of autism, but many don't know what it is.  They don't know the behaviors that some kiddos exhibit.  It just looks like bad behavior to them.

I recently saw a Facebook post going around (http://www.distractify.com/trending/2016/09/23/dad-autistic-son-no-friends) about a child who brought a school "about me" paper home.  As his dad was reading it, he was struck by his son's answer to "some of my friends are...".  It said, "no one".  Oh, cue the tears!  The part that I immediately identified with was the man's post about the fact that there is still such a lack of empathy towards anyone who might be different.  We've always taught our boys that everyone is different and that God made us that way.  However, I don't think it hit home until they had a brother like Ben.  Are they always empathetic towards him?  Nope.  Are they always willing to stand up for him?  Nope.  But!  This is when the conversation should start.  Special needs (in everyone) is becoming so prevalent and it's ok to just flash an empathetic smile when you see a parent going through all this.  We aren't always looking for help, but the nasty looks don't help anyone.

I don't believe that God gave us Benny to punish us.  At one time this was my thought.  Maybe I wasn't a good enough mom, so this was going to be my new struggle for the rest of our lives.  No.  I believe now that God placed him with us for a reason - a good one.  Is he tough?  Oh my goodness, yes.  I will be honest in saying that there are days that I just wish I could send him somewhere for awhile because I can't take anymore.  But he's enriched our lives so much and when I see him accomplishing new things, saying new sounds/words, and being so proud of himself, it's all worth it.  I don't love him anymore than our other boys, but there is something about seeing your kid struggle SO MUCH with everything, that you beam just a little more when they reach an accomplishment.

By the way, I have now made autism awareness cards that I will keep on me at all times.  Again, we aren't looking for your sympathy, just a little bit of understanding and empathy! :-)

Whew!  Ok - so now that I got that off my chest :-), we've been busy.  We're settling into our new therapy routine.  2x a week Ben is doing speech right in Springfield (YAY!) and we're making the one hour drive (each way) to Mankato for occupational therapy every Thursday morning (bright and early!).  Ben got a new "chewie" to try at home during speech today.  He constantly chews on his fingers and hands.  The "chewie" that we had, while awesome, was hollow and spit was getting everywhere and it was disgusting.  They bought a new solid one with a handle for him to try.  He seems to like it, so I'm hoping it will help.  Ben's feet and ankles have become our newest concern at OT.  They mentioned to me two weeks ago, that Ben is REALLY struggling with his gross motor skills (along with holding attention).  I've been noticing his feet are turning out , his ankles are also rolling in, and he's been walking with a bouncy limp (hard to explain), so I asked if that could have anything to do with it.  His therapist said definitely and she mentioned possibly getting Ben fitted for AFOs (ankle foot orthosis).  They hadn't really noticed a huge problem but said they would check it out.  They kept him barefoot for therapy last week while they worked on some strengthening exercises with him.  His therapist said that he has some muscle tone while moving his foot up and down (pressing against her hand for resistance), but that side to side he has almost no muscle tone.  His ankles are sort of like jelly.  He needs to strengthen these muscles (which I've known for a LONG time - it's why I pushed for AFOs at least a year ago), but because of his age, the AFOs would most likely hold his foot in the same place and not improve it.  I will find out more on Thursday, but they are working up some exercises to do at home and we were told to let him run around without shoes on more at home, so he can strengthen those muscles and not rely on his shoes as much.  He lasted about a 1/2 hour the other day, before he was bringing me his shoes to put on.  They also gave us some weighted items to try with Ben during meltdowns.  He has a weighted lap pad and a shoulder weight.  It looks like a scarf.  He likes them and uses them in the car, but I haven't noticed any changes with it.  We tried bringing them inside and he just threw them at people when he got mad.  We took them to church and Sam wanted to play with them.  Ben even wore the neck/shoulder weight at the park.  I think that is the one he likes best, although it was always slipping off his shoulders.  They ordered him a weighted vest and we should get that on Thursday.  I'm hoping that helps.  In the mean time, Ben is very attached to his small stuffed puppy.  He takes it everywhere, but I always make him leave it in the car.  For some reason, I let him bring it into church on Sunday.  He sat better than he ever has.  There was no yelling, no squirming/thrashing, and no complaining.  I'm starting to wonder if his puppy is his "safety net".  From now on, he can bring it anywhere with him.  I'm hoping to see that it helps him and improves some of his struggles.

We also have about a month to go to find out if they found anything with his whole genome sequencing (WGS).  I originally thought we would get results mid-July or so, but the date is actually still mid-August.  No biggie!  That's what we were expecting anyway!

Thank you for following our journey.  It's ok to let people know that Ben has autism.  It's not a secret and we're not embarrassed by it or hiding it.  We just want a bit more understanding for Ben and for autism. :-)

Sara