Welcome To The Future

Welcome me into the future because we now have DVR.  Yes, it's true, we went from dragging our knuckles last week to now having a dvr receiver in our home.  Who knew that life could be so good?



The dvr was originally supposed to be for me, but, of course, it is being dominated by Logan.  This is a good thing, though.  After receiving the dvr, I realized that I can record all of Logan's favorite shows and new episodes.  No more dvds and changing them out every 10 minutes.  This is revolutionary, although I am about a decade behind, I think.




Logan was also assigned a new service coordinator this week.  Let's just say I have been at a loss for words regarding his previous service coordinator.  Not to sound pretentious, but she was really a redneck, missing teeth, just very backwoods and was constantly telling me that Logan "ain't that badly autistic".  What does that even mean?  She came one day in 1984 acid washed jeans, a pre-pubescent, hot pink, skin-tight, athletic jersey-style t-shirt with the "14" on the front and a pair of rubber flip flops.  You know the flip flops...the ones that we used to get out of the bin at the dime store when we were kids.  Please don't misread what I am saying, I am not being condescending.  My point is this lady works for a state agency and comes into people's homes as a professional and this is just not an outfit or a persona that is screaming "trust me" or "you are in good hands".



Our Service Coordinator (ok...maybe I am exaggerating just a little)


So our new service coordinator came this week and to put it mildly, I wasn't expecting anything earthshattering.  I was pleasantly surprised.  His new coordinator was professional, articulate, and most importantly KNOWLEDGABLE. 

She was very concerned that Logan melted down for the entire time we tried to visit in my house.  We took him outside to try to divert his attention.  Going outside usually diverts his attention, but it poses other problems.  He runs away and won't stay in the backyard.  He kept darting off and I kept having to chase him down while she and I were talking.  Again...she was concerned.  She asked me how often did that happen and I told her frequently and told her how we have to put him in a harness in public places.  I also told her about 40 feet behind our house in the woods is a pond and that I am fearful of him wandering away and drowning in that pond.  I told her the only thing I felt good about was the fact that we live really far off the road where it would take him a long time to reach the highway.  She asked me why our other service coordinator hadn't offered us "fence service". 

Perplexed, I told her I had no idea what she was talking about.  She told me that we should have been offered a free backyard privacy fence for Logan due to his elopement issues.  She was visibly frustrated that I didn't have a clue about the program.  She told me that she would put it in the works for us to receive the fence.  She said that they have local contractors and donors that volunteer the material and the services to families in need with children with autism.  I was floored and ecstatic all at the same time.  She also told me that I could have received a weighted blanket from the agency she is with when I told her I had been shopping for one.  She agreed to bring me one next week.  She also told me that I am eligible for respite care, which I have never been offered.  She was very upset by the fact that none of these services had been offered to me by the other coordinator.  I bit back the urge to tell her that she may have offered them but I may not have heard her due to the snuff in her mouth.  I have a tendency to let my sarcasm get the better of me sometimes. 

So, we are super excited about some of the upcoming services we are going to be receiving for Logan.  I have heard lots of moms talk about respite and because it had never been offered to me, I had just assumed we weren't eligible.  Amazing.

Good things are happening in the Hill household this week.





Mommy gets to watch Young & The Restless after everyone has gone to bed.  Logan can watch new episodes of Yo Gabba Gabba uninterrupted.  I can now pause a television show during a meltdown (I am sure the inventors of the DVD never imagined it would be such a gem for a parent of a child with autism).  And last, but definitely not least, we are going to be receiving lots of new services that should take some stress off this family. 

Ain't Too Proud To Beg

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Here's Your Sign

So...I've been good lately.  I have been on my best "Autism Mom" behavior.  I have been understanding when other's aren't.  I have been really on a roll with the "in their defense, they have never heard of autism" standpoint.  I have been substantiating other people's ignorant behavior because I don't want to be that snarky, bitchy "autism mom".  You know the one...the one that is out to get everyone who doesn't jump on board the autism wagon, the one that wants to beat everyone's ass who stares at their child, the mother that is on a mission to shove their child's autism down someone's throat and "by God they are gonna like it!!!!".  That autism mom.  I have been forcing myself to poop butterflies and rainbows while taking the high road.  

It isn't working.

I do try to promote peace, love, and autism, (don't get me wrong), but lately I have just really had it with the explaining, the educating, and the hand-holding when it comes to family members and complete strangers.  I mean...I can understand having to occasionally break things down for family members.  I have to associate with them and share holidays with them and I can somehow find the patience to explain a meltdown or another behavior.  I can find it within myself to explain that my child isn't "a slow leak" because he eats crayons and that he does it because he craves sensory stimulation (while shooting the bird at them when they walk way).  I can do these things.  But, why the hell do I continue to try to explain autism to complete strangers?  I answer my own question..."Because Jessica, you run an autism support group and you have to set an example."  "Jessica, (I like to address myself when I am trying to rationalize a situation) how are people supposed to learn about autism if you don't snatch them out of the darkness and bring them into the light?"  "Jessica, you have to be the bigger person and advocate for your son."  Yes!!!  Advocate!!!  I just get tired of advocating and my words falling on deaf ears.

I told you our shopping trips have gotten better and when I say better I am being positive.  They aren't met with screams, headbutting, or severe self-injurious behavior...except of course if Logan is in Toys R Us and sees an aisle full of Crayola Heaven.  We were there yesterday and bless him, this child knows nothing of the word or concept of patience.  He doesn't understand that when you see something you want...you have to pay for it.  His concept is, "Crayons=MINE".  I picked out a couple of Color Wonder sets and put them into the cart and he began to scream at the top of his lungs..."Color-Color, Color-Color, Color-Color!!!!".  I kept saying lets look around and find you some new dvds (cause Mommy needs a break from Diego and the Three-Toed Sloth episode....uggggghhhh).  All he could focus on was getting that Color Wonder set out of the package and those crayons into his little hands.  He lost all sense of reality and fell down the rabbit-hole of insane.  Right there between the Melissa & Doug puzzles and the coloring section, my child began to transform into mayhem.  This was one nasty meltdown, let me tell you.  And you could say in a way, especially to someone who doesn't know he is autistic...that this was spoiled and bad behavior.  I give it to you (by you, I mean strangers who are looking at the drama unfolding), this child wanted to color right there in the middle of the store and I wasn't allowing it and he was pissed...but the meltdown ensued not only from not getting his way, but from not being able to communicate and understand that in five minutes he could have the whole Color Wonder set to himself. 

He was wearing his famous t-shirt...the one from CafePress that reads "I Am Not Naughty.  I Am Autistic.  Please Be Understanding".  It usually helps.  People see a child having a complete exorcism...they read the shirt...they stare in horror for a couple of minutes and they move on.  I can take the stares...stare away...just don't approach me and say anything to me or my son...those are my rules.  My other rule is if you are close enough to me for me to hear your nasty comment under your breath about my child and my parenting then you are also fair game, but I digress.

So, where was I?  Oh yeah...here we were in the middle of Toys R Us having a disasterous meltdown over "Color Colors" and I am standing my ground.  "We aren't leaving", I say to myself,  "Let em' stare...I don't care".  And stare they did.  We finally made it to the video section and he was in full meltdown mode.  I picked him up and put him on my hip and began to show him all the different video choices.  I probably looked insane because I was extremely calm and nonchalant while picking through the videos while I had this wild animal headbutting me and pulling my hair while screaming and kicking.  I just continued to shop like I didn't notice it. 

I get the to register to pay for the videos (and they could have been pornos for all I knew at that point) and let's not forget the Color Wonder sets that ignited the fire to begin with and the guy behind the counter began to ask me if I had my Toys R Us rewards card with me.  Mind you, my child is still on my hip headbanging, screaming, and kicking.  I politely said, "no".  He then proceeded to ask me if I wanted to open up a Toys R Us rewards card to save and to receive coupons on future purchases.  I had a Toys R Us rewards card in my wallet but didn't want to have to juggle through the meltdown to find it so I just told him I didn't have one...not realizing he was going to give me the whole spill on how great it was and how it only took a second to apply.  I mean, REALLY????  Do you see this child attacking me and you think I am concerned about getting 10% off ?????  Surely, he didn't think I was a secret shopper grading him on his check-out protocol?  I was trying so hard not to be rude, but I felt my inner sarcastic bitch coming out in me and I said, "Do I look like I want a rewards card?".  He just looked at me and Logan for a second and replied, "No Ma'am, you don't".  I said, "Then is there anyway you can ring me up so I can get out of here and handle my son please".  He immediately began to ring up all the stuff in my cart with a fury that I have never seen before.  I almost felt bad for snapping at him, until it happened. 

There is always that one moment that will stop me in my tracks.  The comment or remark that will make me turn on one heel and come back and let someone hold it.  His female coworker said (loud enough for me to hear), "Dese parents wid dese hyperactive kids need to start gittin dem on some pills in stuff cause I am gon lose my mind up in here."

This comment came from an employee of the largest retailer that supports Autism Speaks and obviously there is no training on how to handle a customer or child in the store with autism.  Hmmm?  My next thought was, "Gee, he is wearing a t-shirt that says in very large print that he has autism and you still utter ignorance?".  My third thought was, "I have to correct her grammer." because I am and always will be a "Grammer Diva".  I was an Honors English student, a communications/journalism major, and the editor of my high school newspaper and to hear her spew a sentence of such jibberish shook me to my core.  I didn't know where to start first...defending my son's autism or the English language itself...it was a toughie let me tell you, but the autism won out. 

"Ma'am", I said, "what you are witnessing isn't hyperactivity and can't be washed away with a pill.  This child has autism and he becomes overstimulated in stores and has communication breakdowns which cause him to exhibit extreme behavior.  This happens on a regular basis and I can promise you if I haven't "lost my mind" yet then surely you can hold it together.  By the way, he has on a t-shirt that clearly states he has autism and asks for your patience, so your patience would be greatly appreciated.  And for the record, I donated $20.00 to Autism Speaks the last time I was in here and am saddened to see the lack of autism understanding from a store that sponsors such a large supporter for autism research and advocacy."  There...I had done it...I put this woman in her place and set her straight and it felt good.  I was expecting Bill Engval to jump out and yell at her, "Here's Your Sign".

I took a step back, feeling very accomplished in my advocacy and I was met with a very unenthused, uninterested expression and a very simple response...

"I didn't know.  You should let somebody know before dey say sumthing." 

I want you to take that all in...that's right...think about what she just said. 

"Let somebody know before dey say sumthing". 

Priceless.

This is why it is so hard to continue fighting this fight.  It is so hard to stay politically correct when you are dealing with ignorance of this magnitude.  I am either going back to handing out cards again to explain my son's autism or either I am going to start using the middle finger, but vocalization is becoming completely futile. 

Don't Count Him Out

For two and a half years we have been running in circles between Logan's therapies and appointments...just trying to push him into some sort of normalcy.  It finally dawned on me about 6 months ago that no matter how much he progresses or improves, he will always be autistic and he will never be "normal".  That is hard for a mother to swallow.

I have been reluctantly gathering his toys together for a yard sale.  This has been a very depressing thing for me to do.  You see, there is nothing wrong with these toys except for the fact that they take up space and no one plays with them.  We have bought all sorts of toys in blind faith, hoping and praying that Logan will one day wake up and play with them.  You name it and we have bought it...Thomas the Train sets, Little People, ride on toys, McDonald's play/pretend toys, Spiderman, Buzz Lightyear, and of course the stuffed animals.  They all line the walls and just stare blankly from across the room.  It is almost like they are begging me to take them to a child that will love them.  Logan has thrown them across the room, broken their arms and legs off, and destructed most of them.  He has never truly "played" with them.  He has no concept of playing pretend and that is common with most children with autism.  The stuffed animals are the worst of the toys for Logan.  He doesn't like the way they feel and if you touch him with a stuffed animal he screams and has a meltdown. 

We have been trying to get him hug a teddy bear since he was a few months old and the reaction we would get from that was not pleasant.  His occupational therapist determined that stuffed animals pose lots of sensory problems for Logan.  First, most of them have fleece or fur that he has a tactile aversion to.  She also determined that he doesn't like to look toys "in the eye".  We started noticing that she was right...he would have nothing to do with any toys that had faces or eyes.  Just like people, he did not want to engage the toys or make eye contact with them.  For over a year and a half, he has been receiving therapy to help him tolerate the touch and feel of a stuffed animal and therapy to help him learn to "play" with them and show them affection.  This has been a very difficult process. 

This therapy started out with letting Logan jump on the trampoline (which is something he loves to do) while his therapist rubbed a stuffed animal under his shirt, across his arms, and down his legs.  It was not a well-received practice but eventually, week by week, he began to accept and tolerate the practice.  A few months ago she switched to a furry mouse puppet that she would put on her hand and pretend to talk to Logan.  He was terrified of the mouse and didn't want any part of it.  He would tell the mouse "go" and "no" and would scream for her to put it away.  Over the last month he has allowed her to play with the mouse and he has actually put his hand in the puppets mouth, squealed with laughter, and rubbed the mouse.  It is amazing what his therapist can get him to accomplish.  I accepted that this was tolerance and that he may never love a stuffed animal or even want one but that he could now at least tolerate the idea and not freak out everytime he saw one.  I was satisfied with that. 

I have several bags and piles of toys stacked up in Logan's room waiting for a free weekend to have our yard sale.  I have a pile of beautiful stuffed teddy bears and stuffed puppies that were given to him as a newborn that he has never shown any interest in.  There is a monkey in a red jogging suit that we gave him on his first Valentine's Day that was met with screams and violent behavior.  There is a soft little blue bunny my mother gave him for his first Easter.  None of these toys have ever been hugged or loved like they would have been if they had been given to a different toddler...a toddler without autism.  I have been hoping someone would buy them at the yard sale and give them to a child that would appreciate them.

Last night at bedtime I told Logan to tell everyone goodnight and he did his usual repetition of "nite nite" "nite nite" "nite nite" all the way through the house.  I picked him up and swung him over the baby gate and saw him take off into his bedroom.  I climbed over the gate and rounded the corner into his room only to find him standing there with his back to me at the pile of stuffed animals.  I stopped and watched for a minute.  He bent down and picked up the brown stuffed dog that my grandmother had given him when he was born.  He brought it up to his face and looked at it and then turned around and said "Bear".  I said..."Yes, it is a teddy bear"...even though it was a dog.  It didn't matter at that point.  He wrapped his little arms around it and gave it a hug and said "nite nite".  I said, "Would you like the bear to go 'nite nite' with you?".  He walked toward his crib with the bear in his hand.  I picked him up and layed him on the pillow and told him that I loved him and I gave him a kiss and he leaned over and kissed his "bear".  He closed his eyes. 

I walked out of his bedroom and cried like a baby.  They weren't sad tears and they weren't happy tears.  I think they were tears of relief.  He can show affection.  He can be interested in things that other children are interested in.  He doesn't need to be written off.  I learn a new lesson every week and this week was no different.  He might take him a little extra time and a little prompting and patience...but I will never say that my child isn't "normal" again and I will never count him out.

This One's For You

I haven't blogged in a while and let's face it...I haven't had time.  Since school has been out we have been on a roller coaster of dysfunction.  Schedules are out the window, house looks like disaster zone, and there is no rhyme or reason to be found.  But that is okay...this is our life and we have to live it.

I am not going to stress over it too much.  I am keeping meltdowns to a minimal these days basically trying to keep everyone happy.  If that means a little dysfunction then so be it. 

I am happy to report that usually my children on the spectrum dominate our time and the rest of us and our neurotypical children take a backseat to the madness but for the past few weeks our world has been revolving around my ten year old.  My ten year old is usually always the child that gets put on the back burner at our house because of autism.  He does what he is asked, makes straight As in school, is well-behaved and for the most part goes with the flow.  Sometimes this is hard for him though, and as a parent it is hard to watch.  I know it isn't fair for us parents to be dealt the hand of autism, and for some of us it is more than one child in the house with autism.  But, how unfair is it for our children that aren't autistic?  They certainly didn't ask for this and most of the time my son is accepting and understanding.  Then there are times where he gets frustrated, just like me, and wants to curse autism. 

Landon plays baseball and it is his thing.  It is his outlet...his time to shine.  It causes lots of upheaval in our house of autism, but I cannot deny my son his love of baseball and his time to break away from the madness.  I have hauled up and down the roads to baseball games all season.  I have toted my two year old kicking and screaming in the throws of autism to the car.  I have chased him around and around on the baseball field with nothing more than the length of his harness keeping him from disaster.  We have gotten home so late that all bedtime routines and schedules were merely a memory.  But it has been worth it just to see Landon smile.  It has been worth all the bumps and curves just to see him in the spotlight for once...not being pushed to the back of the line.  So this blog is usually dedicated to my children on the spectrum, but today it is dedicated to the unsung child.  The child that accepts.  The child that never complains.  The child that is a hero to his brothers.  The child that deserves every once in a while to just be a child and not a miniature adult. 

This is Landon pitching during his regular season with the Contentnea Indians 10-U baseball team. 

These are pictures of Landon playing in the All-Star Tournament.  We had to drive over an hour away for three days for him to play in the tournament.  It was great to show Landon that our family can make sacrafices for him just like the other children.

This is Landon on July 4th with the Kinston Indians, our local minor league baseball team.  They are a division of the Cleveland Indians.  This was a big day for a ten year old little boy who loves the game. 

So, yes, our summer has been crazy and dysfunctional.  I have laundry piled up and housework to do.  I have pushed my children with autism to their breaking points, along with mine and my husband's sanity.  But lots of special things have happened for a child that never complains, always perserveres, and somehow endures this life that he didn't ask for.  This one is for you, Landon.