What Having Children With Autism Has Taught Me

Ya know, there’s tons of blogs and billions of blog posts on autism.  I’ve read a few, commented on a couple from time to time, but on my own I’ve mostly stayed away from posting much on autism.  It’s not because there’s nothing to say, it’s just the way we see the kids evidently is much different than many of the bloggers out there.

Our 3 are on the spectrum at varying levels.  One is almost ready to *not* be on the spectrum as he’s outgrown most of the things he does that’s considered on the spectrum.  One is going farther into the spectrum (almost like he’s sucking up all the things that the other one has stopped doing).  One just had an evaluation for the spectrum.

Mr. Kevin has went from mild autism to PDD-NOS, and working his way down.  Believe me I’m happy–he’s displayed less and less of the autism type behaviors as he’s grown older.  He was diagnosed at 2, after putting his head through a plate glass window after headbanging.  He at that time had textbook signs and was an easy diagnosis.   Now, before doing the full Baptist happy dance…he does have a replacement diagnosis that will dominate the rest of his life.  He is also diagnosed with Bi Polar disorder, which his biological dad also has.  But even with the bi polar disorder, he has chance at a normal happy life and independence and so on.

Mr. Michael was diagnosed with Asperger’s at 6 or so.  I think it was 6.  He was in kindergarden anyway.  He’s 10 1/2 now, and with each passing day the signs show up so much more distinctly.  Such rigidness in everything–anything with instructions must be done precisely as written, with no variance.  Sounds are hard on him, he hears things the rest of us can’t.  He gets overstimulated so easily.  And violent–when he doesn’t get his way, he chooses to lash out physically.  He also has severe adhd to contend with, and it’s not just the wiggling in the seat type thing.  Oh no, that’d be a blessing.  His is absolutely so wild and unable to concentrate first thing in the morning that he is not able to comprehend his own name, get dressed, etc.  It’s a daily fight to simply get out of bed, do bathroom time, take medicines (he has been threatened with suspension without it), and get ready for school.  Without medicine, he has paranoia that is unreal, is so unable to focus he is in his own world and may as well talk to the moon and get an answer as to talk to him, so hyper he can run around the block 10 times before I get out the door (or seems to anyway), so super sensitive to sounds that he hears something across town and asks us what it is (as if we heard it too).  And he flaps enough that if combined with the hyperness, he will someday take flight.  Literally.  But with all that, he has the extreme brilliance–he is super super smart, near genius IQ (was 110 at 6 yrs old, and due for another test),  can take things apart (especially electronics) and put them together (in varying ways).  He has programmed a tv to get radio reception (it didn’t have a radio) and freaked out his grandma and grandpa (they weren’t so pleased).  He when he was younger was able to put together a tv/dvd/vcr/cable (all different boxes, dvd and vcr was not combined) and make them all work.  He is totally obsessed with computers and computer games and video games and anything electronic.  And now Star Wars and light sabers.   He has an imagination to equal George Lucas’s.

Miss Jess, she’s a quiet one.  She has a submissive spirit, but a wild adhd like her brother as well.  She is a tomboy, loves playing with hotwheels and barbies, soccer and tea parties.  She was a screamer as a little girl, at 2 to 4, she screamed at the top of her lungs when things didn’t go her way.  She didn’t want to go to bed, she’d scream.  All night.  She didn’t want to take a bath, same thing (and she still got her bath).  She didn’t want to do anything at all, the high pitch screaming came out.  Her verbal skills didn’t start til near 5, and the screaming steadily went down.  She also didn’t potty train til 5, when she’d simply choose to pee or poop in her pants, would tell us she knew she had to go and then would play or watch tv instead.  It took making her wash out her own panties that she got the hint really fast, and she decided it wasn’t so fun to sit in pee and poop anymore.  She is very slow, not mentally, but physically.  She will goof off, daydream, anything but the task given to her.  Homework from school can and usually does take allllll evening…for 6 to 10 simple math problems.  A simple meal takes an hour and a half.  Dressing about the same amount of time if we let her.  I’ve seen a 2 legged turtle go faster.  She is smart when she chooses to show it, but usually chooses not to.  She has so much potential, if she’d only physically move.

I’ve learned that they are not a diagnosis.  They are kids.  Slap whatever label on them, they are still them.  They will test limits.  They will act out.  They will drive us nuts.  But they are not their diagnosis.

With this family, we choose to not let their diagnosis rule them.  Many folks would let them slide on things because of the autism stuff.  Umm no.  They are able to learn correct behavior at home, in public, in church, in school, in stores.  The kids may not like having to practice it, but to be honest, with the work they’ve done to learn correct behavior in public, many times they are much more behaved than ‘normal’ kids.  I can sit them in a pew at church, and you won’t hear them.  They may wiggle, but you won’t see them acting out (or if you do, you’ll also see consequences and a learning experience for them).  I can take them to a store, and you won’t see them throwing big fits wanting the latest toys.  Oh, they’ll bug for things, step out in front of folks as they hang on to the cart, fuss with each other as siblings do, etc, but you won’t see the fits that many ‘normal’ kids do demanding the latest, most expensive toy.  Why?  Training.  I tell them no, I teach them that there’s reward for good behavior, and a punishment when they behave badly in public, and it’s up to them to choose.

Don’t get me wrong, it didn’t happen overnight.  And it wasn’t easy.  It has taken years of training, years of episodes of one, two, or all three acting out so badly I had moments of where I wasn’t sure I wanted to be associated with them.  I’ve carried them out many times kicking and screaming.  I’ve been hit, kicked, scratched to bleeding, etc over not getting what they want.  And each time, I’ve been consistent.  Regardless of what they’ve been labelled with, they can and do learn.  And they will model what they see and are taught.  If you teach them that they can’t learn because of a diagnosis, they will run wild and nothing will get through.  If you teach them that they can learn, it’s expected of them, there’s consequences for good and bad actions (good consequences and bad consequences), and that they can control how they do, the DO learn!

When Mr. Kevin was 2, I was told by a behavioral therapist who was doing in home work, to never tell him (Kevin) no.  Over my dead body would I follow that!!  Granted it cost me a lot of sanity and skin and a few pints of blood (that boy could scratch like a pro), but he learned quickly what no was, and that mom meant it.  Mr. Michael was taught for a while (not by me, but by his doctor, dad, therapist, school, etc) that medications were the fix and if he acted out it was the medicine’s fault.  He’s had a hard lesson, as I’ve had to teach him the opposite, and his dad has followed suit.  He has learned that regardless of his medicine, he is able to control his actions.  And he is held responsible.  Mr. Kevin has had to learn that as well as he just started blaming a medicine for his acting out, and his psychiatrist and I both told him that he is responsible for his actions–we both told him at the same time in the psychiatrist’s office after he’d been acting out horribly in public, and had some nasty consequences).

The point is, the diagnosis does not determine their lives.  They can choose right and wrong, and learn.

I’ve learned to lean on God.  Oh, I’ve seen folks who’ve said “I took care of me, God didn’t do it”…but they’re wrong.  God gives us what we can handle, nothing more.  He knows what it will take to make us let go and hold on to Him.  God knows that we will have to lean on Him in order to raise the three kids.  We can’t do it alone.  We have to wrap them in prayer, give them over to Him in order for Him to work His will in them.  I’ve learned to heavily lean on Proverbs 3:5-6 and Proverbs 15:1.  Without Him, I couldn’t be the mom the kids need.

Raising children with autism spectrum disorders isn’t all that different from raising “normal” kids.  There’s ups and downs.  There’s learning experiences that you live through and grow with.  There’s family that will never understand.  There’s friends who stick beside you, some that go away.  But God is always there, He understands.  He created each child, knew them in the womb, and knows each hair on their heads.  He gave each child to us for a reason, and some days I really believe it is to make us lean on Him more.  Sure, it’d be easy to say that “I did it”, but it’d be a lie.

He did it.  It’s all because of Him.

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