Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts

Wednesday, July 6, 2016

Dog Days of Summer

video

I'm unsure if the video works but this is a very big deal.  Benjamin has absolutely no fear, so going off the diving board has been 'off limits' because I'm the one with fear.  I caught him doing it anyway, and realized that in this instance I needed to reconsider the direction I was taking.  So we worked out some 'rules'.  He struggles with an awareness of others.  For example, at dinner in his mind there is only one conversation - the one he wants to have.  When selecting a movie, there is only one choice - his.  When there is a line to stand in, he disregards unless we reroute him quickly.  He just has zero awareness of others - everything is from a Ben's world view.  His teachers and Doctors have really helped us with strategies to 'make him better aware'.  Okay, so I said all that to help you understand why this video is important to me (and I do hope it is working).  Ben begged me to make wevideo (Ben word) of him going off the diving board.  I agreed, but when I caught him checking with the lifeguard if he could go I was SOOO proud of him.  The lifeguards had worked with him about 'when' to jump, like  how it isn't okay to jump right after the last diver due to the likelyhood of crashing together, or jumping on top of someone else.  They also let him know when he needed to take a break from jumping off because #they needed a break'. Often he stands on the end of the board for several minutes as he considers his jump.  He listens to them too, doesn't throw a tantrum.  This pool pass, it has been important in ways other than just letting the kids have fun! 


This is the year a pool pass was a reality.  Ben was finally at a point where I knew he would be okay without me right next to him.  His need for independence makes that hard on both of us, but his lack of an awareness of danger made going to the town pool too overwhelming for me to even consider.  


Water does something for all of us.  When I had lots of little boys under the age of 8, I used to fill up every pitcher and drag out every piece of Tupperware and then add random food coloring to them.  The boys would splash and play forever outside just pouring and mixing those concoctions.  It saved me during long, hot Summer days while Pete was working long hours and we lived thousands of miles away from family.  Even now when someone is especially out of sorts I'll recommend taking a hot shower or long bath to 'cool' off - and it always works.  So the pool, well it is all of that and more.  The younger kids play hard while we are there, they always find a friend or make a friend and the result is that each evening I've got hungry exhausted kids with the sort of calm about them that comes from a day well spent.  




The only way to make the town pool more wonderful, is to add a cousin visiting from out of town.


Wednesday, May 18, 2016

Practice the Pause


So this happened, by the skin of his teeth it happened, but happen it did and that is the working of the Holy Spirit.

We had come to the conclusion around New Years that this wouldn't be Ben's year for First Holy Communion.  You know that light bulb you see go off in your child's heart, the one that you look for that shows you that there is a true desire to understand and embrace the teachings of the Eucharist, the importance of it all.  We couldn't see that clarity, only a fuzzy question mark and we knew in our hearts that it wouldn't be right to go through this for the ceremony, that would only confuse Ben more when he did grasp it - and it is a hard concept to grasp for all of us.  This understanding of bread/body, mystery cloaked in ordinary, making it all so very extraordinary.  

Our family always attends the Easter Vigil, it is a tradition we began once we had everyone over the age of 5.  Well, if you are a child on the Spectrum, the Easter Vigil is more than hard.  Everything we love about it because it appeals to all our senses, make it agony for a little one who has their senses being pulled and jerked in every direction.  Ben and I tried to go sit in the Narthex, but that was even too much with so many little ones out there already, and parents doing their best to hush them, created a whole new frenzy of sensory overload.

We left.

Ben began to cry once I started the van to carry him home, true and real tears.  He did NOT want to leave, he just couldn't be in Mass with so much assaulting his senses..... and so began a conversation where I could feel that his heart and brain were connecting, a soft wax moment of complete clarity.  Pete and I knew afterwards that he was ready for First Communion, the prayers and everything else had long ago been learned.

We have been on a roller coaster ride with him this year, so much going on, so much hard, white knuckle hard, the kind of hard that you just want to curl up and shield him from everything- which isn't good for him at all, only easier for you.  Sometimes I just want easy.

I had planned to jump right back into blogging.  I have so much I want to share, I want to record for our own memories.  I find it difficult to sit down and share because there is a lot I don't want to remember, I want it to fade away and only leave the fond, good, special times but the reality is that we are in a whirlwind of assorted moments. Isn't that how it goes, the pain always gives way to birth the happiest.  

When all is said and done, every single day Ben forces me to be a better person, to reach to places I honestly didn't think existed within me and to be patient, to pause.  We, as a family, are learning to practice the pause, it is good for us and hard for us.  When we pause though, we have these moments with Ben that lead to good things, we are learning that the Holy Spirit is in the pause and I thank Ben for helping me realize this truth.




Tuesday, May 5, 2015

Glitches

We have been having spotty internet for a while now.  The boys and Pete bit the bullet and found a new router to help us achieve the high speed internet we are paying for.  It helped a little but not like we expected.  I decided to clean up the computer and ended up refreshing the whole system...which caused me to ruin what little high speed internet we had achieved, and totally be unable to access our photos etc..etc..  Ahh the troubles of knowing enough to be dangerous.  

So, we hope to have this little issue fixed and be back up and running today, but until then I will not be posting my regular updates.

The light is so beautiful right now, my camera is constantly in my hands.  I love this time of year.  We have storms moving in sometime today and it is supposed to rain, rain, rain for the next week or more.  *sigh* we will always be grateful for rain, it has been so dry here and drought continues across the country - I can't complain.  I'll just enjoy the sunshine for as long as I can.

One tid bit to share though.  We saw this clip from Big Bang Theory last night.  We all laughed so hard and loved it because we have our own song in this house that MUST be sung to Benjamin when he takes a bath.  If you interrupt or mess up, he will make you start the song all over again and sing it right.  The similarities are uncanny:



I'll be back soon, once I figure out our internet troubles!

Wednesday, April 22, 2015

The Gig Is Up


We had Ben's well child check up this week.  I quit going to those a few years ago.  Yes, I did.  I couldn't bare going through the questions at the beginning of the appointment, those benchmark questions.


We did go to the Dr. and we did discuss my concerns, but I avoided the 'well child visit' like the plague.

I bit the bullet and went yesterday.  I still detest the questions at the beginning.


Diane our nurse walks in and checks Ben's vitals and then starts asking me bullet point questions.

One right after the other, and I answered them - those questions I always avoid...the very reason I started skipping the darn well child visits in the first place.  I realized at some point I could talk to the Dr. about my concerns without the darn questionnaire that made me want to spit nails.

What is even harder is that Ben is sitting there, fully aware of the discussion and hyper sensitive to anything that might be perceived as negative about him.  This has me on melt down awareness like a Navy Seal on a mission.


Diane asks, "Does your child know his opposites"
I answer:  "Somedays, not everyday"
Diane gives me this blank stare.  She knows me, she knows my kids...this is not the answer she is expecting.  It was not the first curve ball this visit.
I wanted to say, "Ask me about his art, he creates amazing artwork"


"Does your child understand water safety, can he swim"? asks Diane
"No, my child has no sense of danger AT ALL, but we are setting up..." I start to say as Ben interrupts to share "I'm going to learn swimming this year, this year I am learning it" and he smiles this broad smile that makes me so proud of him. 
Diane is trying to be deadpan unsuccessfully and looks at me..then asks "He hasn't been to swim lessons"?  If you profiled me, I"m so very the 'swim lesson' Mom.  So her learning that we've not done this was surprising.  
I again wanted to interject, "Ask me about how well he knows patterns, and I'm talking patterns you may not have even realized existed"


"Does your child understand fire safety"?
"My child has no understanding of Danger" I reply again (remember our earlier exchange)
"No stop, drop, and roll"? she asks and I try very hard not to laugh a very sarcastic laugh.
So I say instead "He is more interested in the actual fire than listening to us explain Stop.Drop.and.Roll" 
Inside I'm hoping this little fire discussion doesn't translate to a vigilance later about keeping him off the subject of fire.

'
"Does your child do well in school, how does he do with homework"?  she is starting to hesitate as she asks
"He never has homework" I reply and I leave it at that.  She then asks "What about reading"?  
Ben replies "I can read" and I reply "They have sent home some books, and he is working on it"
I want to say "But, get him to tell you a story, he has an amazing imagination"



"Can he ride a bicycle"?  she asks.
I answer:  "With training wheels" and Ben starts sharing all about his bicycle and how he hates his training wheels but that he has to have them and he hates that too.  

We went on and on with more questions and more uncomfortable answers...while Benjamin is sitting there.  It was painful for both of us, but I think we navigated it fairly well.  Poor Diane though.

I realized early on that Ben's chart had not been updated to reflect immediately the whole 'Autism' diagnosis we have going on now, but that has always been.  

Diane is wonderful and we love her, she has to ask those questions and with all of my other children the questions are an easy answer...with Ben, not so much...which is why I hate them.  I do not want some questionnaire pigeon holing my child.  I'd like to create a different milestone questionnaire, or opt out of it all together from now on.

The Dr. finally came in the room and was awesome as always and really on board with everything we've got going on for Ben.  We survived the obligatory Well Child Visit and I had the success of answering those questions I've avoided, for the first time.  Poor Diane, I should have called ahead and warned her.

Wednesday, April 8, 2015

Special Olympics

When we arrived we saw that a drum line was welcoming all the competitors as they entered the track and field.  They were lined up on each side and the kids walked through them.  Music was pumping from a DJ stand and the energy was electric.  Faith, Linus and I all looked at each other with the same thought - "How will Ben handle this?".  
Well, I didn't need to worry because when his group got there someone had notified the drum line to stop so they didn't beat their drums, but they welcomed Ben's group with "Hello's" and "Glad your here" etc..etc..  
Perfect, just perfect!


This was our first time at the Special Olympics.  We couldn't be prouder of Benjamin.  I must admit that when the Special Education team let us know that Ben met the 'educational' diagnosis for Autism, one of the things they shared, as good news, was that he qualifies to compete in the Special Olympics - but I felt sucker punched.  I really wanted him to approve for this classroom placement, but I honestly didn't think he would. So when he did it was the dawning of 'time to move past denial'.  I don't know if denial is the right word, but I don't have a better one.  I know Ben has challenges, in some ways all the diagnosis have been affirmations that I'm not crazy, but deep down maybe I am crazy because I didn't accept just how serious this was.  I'm getting there though, and Ben is doing splendidly and the team was right getting to compete in the Special Olympics IS good news!


The joy on his face as he saw Faith, Linus, me and his Dad there to cheer him on just made my day!



I don't even know how to begin to ask permission to share the photos of other children at this event, but being that it is Special Olympics I wanted to make sure I respected the privacy of all participants as best I could, while still capturing Ben.



This is my favorite shot of the day and Faith took it with my phone while I was at the finish line snapping photos.



So Ben believes he tied for first...but, he was about 2 seconds behind the first place winner.  At all their practices before last week Ben had won.  Then this little guy arrives at the last two practices and won...so this morning Ben was getting really worked up about it.  We all kept reassuring him to be happy for his friends, to cheer each other on...but Ben said "I'm really trying, but I want him to be sick today and not come"  "I mean not sick for the Dr., but sick for school"  "Sick to run slower".  Oh good gracious, I was really really concerned at how Ben would handle the whole thing.  He handled it by deciding, in his mind, that they tied...and that is a beginning towards being better at social situations and not always being focused on self...yay Ben!

One more thing I want to share because I was really touched by it and so was Pete.  The teenagers who came to assist at the Special Olympics were amazing, truly amazing.  I was impressed especially with one young man and I wish I knew his mother so I could tell her.  We finally realized he was the brother of the athlete competing that day and the devotion he showed to his brother will be with me for the rest of my life - I'll never forget it, what an example of compassion and heroism.  I mean here is this teenage boy who is handsome, clearly one of the 'cool' kids and he is completely devoted to his brother and helping him with each event.  I love it when you catch a glimpse of the best in people, especially teenagers who often get such a bad rap.  This teen was amazing and had no idea he was being watched, he was there for his brother.

 I loved today, loved everything I saw and value this community that came together to put on something incredible for these kids!

Thursday, April 2, 2015

{Pretty, Happy, Funny Real}

~Capturing the context of contentment every day life~

~Every Thursday at Like Mother, Like Daughter~

{Pretty}

I didn't edit this.  It was really that beautiful.  I wish I knew how to get rid of the power lines...but other than that, I wouldn't touch it.  God outdid himself with that North Texas Sunset.

{Happy}




Nothing makes my kids happier than getting the whole family together and spending time with their cousins.  Jonah's early birthday party provided a wonderful opportunity to gather as a family, gosh we love these people!

{Funny}


I absolutely love watching the lip sync battles from Jimmy Fallon's Tonight Show.  We found this one on YouTube a couple of weeks ago and cannot stop watching it.  I had to share.

{Real}



April is Autism Awareness month and April 2nd is a special day to wear blue for Autism.  We are going to make T-shirts for next year that say "Blue for Autism Awareness" on the back and "Blue for Ben" on the front.  


Please join Leila for this weeks PHFR.

Monday, March 23, 2015

The First Week


It was a good start.  The first day of school, Benjamin hopped out of bed around midnight ready to go...then again around 5:00 am, ready to go.  He was ecstatic.  Lunch box in hand, brand new Minion back pack from Grandma Truby and he was set.

Each day I read his behavior journal and each day there were smiley faces.  Happy as I was to see he was doing well, I also knew that this was new and we were in the honeymoon phase.

Friday is when the weeks worth of excitement, newness, and schedule took its toll and when I met him at the bus even the aid and bus driver were concerned.  His mood was very somber and brooding.  
The full melt down didn't happen for about an hour though, we all new he was over done, all wires fried and that it was looming so we circled the wagons and as a family did our best to head it off.

Jonah also arrived home on Friday, and it amazes me that despite his no longer living at home and being near Ben he immediately jumps back into 'what works for Benjamin' however;  The energy in this house was electric, friends were coming by and the joy of having Jonah here was fun, bubbling and..... a disaster zone for Benjamin.  Too much, too much, too much.  We are a loud, bawdy, fun loving family and Ben fits right into that, but learning to acknowledge his limits has helped us know when to remove Ben and when to help him cope with the reality of the people who love him most.

Stimming (flapping his hands and twisting his fingers, also the blinking...he blinks a lot when he gets spun up) had started and chewing his shirt.  Pete and I decided to remove him so we left the young adult fun behind and took Benjamin over to Grandma and Grandpa's where there was quiet, his favorite Minion game and a buffering zone.  He settled down and we enjoyed being there for a good long while.  By the time we arrived back at our house the excitement had settled down as well.

So week one down, week two has begun and Benjamin's adventure continues.  

*The reception from my Parish Heroes post has been so wonderful and I appreciate all the kind comments and touching emails.  When we arrived at church on Saturday for our usual Confession, Rosary and Mass one of our favorite friends who sits near us every Saturday came over with a cushion lego piece for 'stress' squeezing during Mass.  She had read my blog post and works at a behavior therapy clinic (I didn't even know this).  I appreciated her kindness so much and Benjamin is still squeezing that little lego, what a great gift.  God really is so good and has opened so many doors of that goodness for us.

Wednesday, March 18, 2015

Parish Heroes


In our married life together, Pete and I have been a part of some truly wonderful church families.  We started out our lives together attending a small chapel on a Naval Base in Florida.  We then attended Our Lady Star of the Sea in Bremerton, WA.  We had a brief pit stop back in Texas at St. Mary's and then got 12 beautiful and growth filled years at St. John the Baptist in Front Royal, Va.


It seems appropriate that God would bring us back to St. Mary's for the years we would need our family and our parish family the most.  This is where we started, where we married, baptized our first child and where one of our children in a time when he was delirious, took himself somehow, someway to this place because it is our home, our safe place.


Our church has grown and we now have Sunday Mass at St. Anne's, this beautiful building located right across the street from St. Mary's.   Perhaps it is the name of our patrons that evokes so much mothering and care towards our family, and I know other families have experienced this too.  Or perhaps it is just the way of Catholics because really, no matter where you go Catholics love to meet other Catholics, I mean when you see someone you didn't know was Catholic with ashes on their forehead on Ash Wednesday, it is like a solidarity bonds you when they see yours too - a secret handshake. 
We Catholics really do take care of one another.


A few years ago the business that Pete worked at closed its doors, without warning, without a pay check, without a thought towards their employees.
 It was like having the rug pulled right out from under us at a time we were already trying to get back on our feet from the economic downward spiral we had just been through.
 We had planned for our children to attend the parish school, but withdrew our application knowing that we could never afford it now.  When this news spread, we got a phone call and a scholarship application which we never expected. It worked out for us to attend - our pastor reached out to us and together we figured out a plan to allow our children to attend the school.
We didn't expect this, not at all.  It was a warm hug in a hard time.
I went to work, the school secretary, Karen worked with me to figure out all the details for after care for my children.
It was also in this time that Benjamin's uniqueness started to present itself more fully.  We knew he had a traumatic brain injury resulting from birth.  We had always known there was something a little different, a little scary...but I was in a deep, deep denial.
I truly believed that he just needed more time.
Karen was gentle with me and my mothers heart. She helped guide me into asking the right questions to find some answers.  I will always, always love her for being like a Mom to me, so much more than a school secretary, so much more than a high school friend's mother.  She took me into her heart and cared for Benjamin in such a way, I could tell she looked at him through my eyes - not as a pain, not as a problem, but as a child that needed more....but more of what we didn't know.


Benjamin had long days at school, and then after care.  He was so young for all this change.  I blamed a lot of his acting out on this.  Our family had never operated with my working and then Pete was gone, the job he began took him out of State full time.  During this Miss Tanya, Miss Virginia and Millie wrapped their hearts around my different child and helped buffer him from himself and from the hard edges of his reality.  I cannot even imagine how he could have gotten through this without all these Mama's.


Tony.  I could write a whole series of blog posts about Tony.  (we kind of love him)
The first time we met him, Ben was having a rough time in Mass, he was also not a baby - so taking him out and sitting in the Narthex (lobby) was sort of like a walk of shame for me - every.single.time.  
Tony came over to us and I could just feel that he was going to tell me I needed to go back into Mass but he didn't, he presented Ben with a little lamb beanie baby.  Ben who was very near a complete and total melt down, accepted this little gift and it calmed the storm for a bit.  Tony smiled at me and walked away.  I think he accepted 'something' was going on here.  Thank you Tony.

The next time we met him I was making the mistake of thinking I could visit after Mass.  Ben is ready to leave after Mass and we had not made room for this reality.  I'm social, I enjoy seeing my friends and catching up.  So there I was trying to keep a grip on Ben's hand and ignore the necessity of leaving.  Ben got away from me for a moment, and before I could blink my eye he was trying to climb up one of the pillars. 

Let me die now.

Tony came over before I could even say "stop" and told Benjamin to 'Get Down" and he meant it.  A very forthright, but kind approach.  It startled Ben and he got down.  He told Ben why he couldn't climb the pillars and when he sensed Ben was not 'there', he explained to me.  I was embarrassed, but Tony was kind.

The next week Ben went straight for the pillars as soon as we came in the door.  I was on him quickly and saw Tony coming our way.  When Tony caught on that I was teaching Ben not to climb them, he gave me a nod and a warm smile.

Week after week Tony would find Ben and I in the Narthex during Mass and week after week he would offer some form of kindness, even gave Ben a board book once.  

I eventually changed strategies on getting Ben to stay in Mass.  We began 1 hour before Mass by attending Confession, then the Rosary first.  We also situated ourselves in an area of the sanctuary that was less busy and near Mattie, his most favorite person in the world (and his cousin). 
 We started having success.  

Tony began high fiving Ben, saying "Good job Mom" to me and really cheered us on.  
It meant the world.

I do think the Holy Spirit led us to where we began sitting.  
Behind us sat Rudy.  A man who looks younger than his 90 + years.  He broke through Ben's barriers of  don't touch me, by tapping him on the shoulder or saying something to Ben about his hair, or glasses or anything - didn't matter, 
Rudy noticed Ben and showed it with a heaping helping of humor and genuine kindness.

Mary had met Ben at Vacation Bible School and had immediately taken to him.  While I fumbled at trying to explain he has some concerning behaviors, Mary just saw a little boy and she sincerely loved his uniqueness.

Mary and Rudy would often sit together, behind us and Mary would pass Ben her offering to put in the basket.  Sometimes Mary would give Ben a pen and paper to write on.  If she saw Ben starting to melt down, she would help distract him away by getting him to notice something else.  She prayed for us and with us.  Mary and Rudy were a team and my absolute saviors on many occasions when Mass would have just been too much.   
I was tired from working, going it alone while Pete was in another state (it wasn't easy for him either).  Pete and I were trying to figure out a lot, it was stressful time.  Our life looked nothing like it had a short year before and in the midst of this, the reality that our family could no longer absorb Ben's quirks and difficulties was becoming very VERY hard.  
Mary and Rudy helped absorb them during all those many services.


Mrs. D, our church pianist and organist, is a special kind of Saint. 
 Ben loves music, and will sit long periods of time at his Grandma Barbara's piano plucking out tunes.  When we approached Mrs. D about his possibly taking lessons I tried to explain him, which was difficult.  
She took him on despite his sometimes finger twisting, hand shaking, rocking and chewing his shirt ways.  
She just worked around his challenges and gave him the gift of music.  She also gets his attention during Mass and her patience knows no end.  At almost every Mass, while in the line for Communion he pulls her shirt or taps her on the back to let her know he is there, he says hi.  

She has never not once put him off.  

Her son directs the choir, we sit very near them.  So Ben also directs the choir, matching James in his hand and arm motions.  Luckily, Ben does not and has never tried to stand with James.  He just sits in his regular spot (because consistency matters a lot to Ben) and he directs away.  I've learned to just roll with this, he doesn't do it every time but he does it enough. 

James's wife is Anne.  Anne is the person I knew would help me create the sign.

The Scheibmeir family goes way back with their family and the friendship is deep and lasting. 
 Anne and I only got to know one another after we moved back to the area in 2010.  
Making this sign for me and really working hard at finding a way to make it affordable and paying attention to the details that mattered to me, has been an amazing gift of friendship.  I cannot thank her enough!

All of these people reached out before we had a diagnosis that would explain Benjamin, before the word Autism became a part of our reality. 

There are many more names I could mention and more stories than I could ever fit into a reasonable blog post.  Like the time Paula held Benjamin in the exact position he fell asleep in so that I could slip out of the pew and go up for the Eucharist or the countless times her husband Matt worked out a ride so that Simon could attend a basketball game that I couldn't bring Ben to because we were having a day that the noise would have been too much for him.  All the ushers who make sure Ben gets his bulletin. (this is Ben's most favorite moment of going to Mass, getting that Bulletin...it's a big deal)
I could go on and on, our parish is full of heroes. 
 People who recognized a need and instead of distancing themselves they came near and found ways to help us, smoothing out the difficulties as best they could.  We became enveloped in their deep care and love.  

They say it takes a village to raise a child, and I agree.

It takes a Parish to raise a family.  A parish can be a loving and powerful presence that transforms a church into more than a place of worship, but a safe haven, a home.  

Our family appreciates all the heroes, our family appreciates our parish and home.

*trust may not be mentioned within the context of this post, but it has everything to do with the trust we have in our parish community, so I'm joining it to the Blessed Is She Link up on Trust*

Tuesday, March 17, 2015

Updates & Instagram Recap


We traveled to Florida to visit our oldest son, Noah. 
 He is interning at a theatre and learning a lot.  
My husband was so exhausted by the whirlwind constant driving and vacation vigilance that Ben brings to the plate.... and only 2 days with Noah.... that once we got home he booked a trip to a closer  really cozy cabin where we can all hole up in for the weekend.  This was so unlike him, I asked him what gives...we just went on vacation.  No, he said we went on a mission trip with Noah as the bonus.  

I love that man! 

 He perfectly described what was a wonderfully fun but very exhausting trip.  Gosh we can't wait to have Noah closer to us - but, he called yesterday with news...news that would take him even farther away if it all works out the way he hopes.

Not that he hopes to get further away from us...

but that he has hopes and dreams of his own and that one of those paths he is considering has become a more viable option.  Have a I ever expressed how proud I am of him???  

So.Very.Proud!


We celebrated my husband's birthday with the whole family.  What a FUN night.  I made him a delicious butterscotch pie, which is basically Mississippi Mud Pie only substitute the chocolate pudding with butterscotch pudding - to.die.for I tell you, scrumptious!  We are naming it Pete's favorite after a history of other desserts named other family members favorite.  Ex.  Phil's favorite, Jude's favorite etc...etc...



Benjamin began school.  
Yes, we made the decision for him to attend.  This is an amazing opportunity.  We live within a district that has outstanding resources for Autistic children and he qualified after months of testing for a place.  The harsh reality that his Autism is such that he needs this environment is mitigated by the fact that I wouldn't be comfortable unless he was in this environment.  He is loving it too. 
We've learned only a few things (from him) though....

First day of school all we heard about was the wheel chair lift on the special ed bus.  It was as if nothing else happened but that lift, he was fascinated by it.  

I had a friend ask me how it went for him and knowing his penchant for toilet paper needing to 'be the right kind' she queried if it was (I love her for that).  So, I asked him.  He let me know that it was just like at home.  Then he let me know that they didn't have his favorite kind of grass.  

He notices grass, everywhere...even when we drive.  

He assured me that he would be okay though because when it got loud they let him wear headphones so he isn't hurt by the noise.

My eyes welled right up with tears because he beamed with this information in a 'they get me Mom' kind of way.  Oh my goodness are we blessed and his teacher who I met with on several occasions before the first day is just wonderful.  


I'm currently working on a post about the heroes at our parish.  People who have touched our life in such a positive way, and they have no idea that we even view them as heroes. 

 Those kind acts are things they do because they are living the Golden Rule, not because they are looking for any attention or to be regarded as heroes. 
 We've been helped, blessed, and taken care of by people who have no idea the impact they've had on me and our family...especially while Pete traveled full time. 

 I was going to share about this sign in that post, but I will share it here too.  I have a good friend Anne and I asked her if she could make me a sign for my car.  I know Ben would be okay if we ever had an accident so long as I was able to help him, but what if I or Pete were unconscious or unable.  It isn't something I like to think about, but the reality is I don't know of any ID bracelet that identifies Autism and I'm not sure I even want him wearing one (and he probably wouldn't due to his sensory issues).  This sign gives me peace of mind because it raises awareness and also helps my child if I can't speak for him.  I cannot thank her enough for this.  She is offering them for sale at only $10 each.  If anyone is interested follow the link under her name and let her know.  

In other news:

*The Parish Heroes Post should be up soon.
*Regular blogging will begin again.
*I'm going to start working on a book, combined with a cookbook or at least recipes.  
Something like "Raising a Frat House"
*I totally fell off the no meat wagon during our vacation, and after watching tons of Pioneer Woman on food network I don't think I'll ever be skinny again.  I just love to cook like that and honestly, I love feeding my family like that.  So, there you have it.  So long as my blood pressure stays down (and it is) I'm good.




Tuesday, February 24, 2015

Not Editing Out Autism


Ben's whole life I've been editing.  I edit out the challenges mostly because I'm a glass half full kinda girl, but also because I want to be fair to Benjamin.  I've come to appreciate it is okay to be a little raw, and a little more forthcoming about the circumstances I edit out.  I think I need to commend my other children in what they have learned to accommodate and live with so that we can continue to enjoy all the activities and fun we have as a family.  When I edit, it leaves out the opportunity to recognize their efforts in helping their brother, or sometimes just putting up with him - they are human after all, but they love him and are fiercely protective of him.

Linus has the hardest role of all.  He is less than 2 years older and it is frustrating to him that Benjamin steals away so much attention.  This weekend was the Pinewood Derby and Linus was very excited to have the family come cheer him on.  Pete and I took the time to explain to Benjamin that it would be loud, there would be lots of people, etc..etc...  We let him wear his favorite jacket with the hood that muffles all that noise and hoped for the best.

Pete drove ahead with Linus and when I arrived I found a good spot to see, and be near the door in case there was a need to depart quickly for Benjamin. (we've learned to take 2 vehicles to a lot of events in order to give one of us an ability to leave if it becomes too much)


When we arrived Grandma and Papa arrived too, so we all walked in together.  See that smile, he was elated to see us there.  This was the first of what must have been 50 turn arounds to check to see if I was still there and still watching.


When the races began, the music was kicked into high gear.  The vibe in this space was electric and the excitement was dripping off the walls.  A very nice woman was standing in front of us unaware that she was blocking Ben's view so he began shouting "SIT DOWN LADY" very loud but thankfully she didn't hear him over the rhythm & excitement filling up the room.  Finally, she did sit down and a song with a low base beat came on so Benjamin started holding his ears and rocking.  He was unnoticed and not bothering anyone so I didn't want to move.  I'd just let this ride a little so that I didn't leave Linus.

*still checking*
Tobias offered to take Ben outside, but Ben doesn't really follow Tobi's direction very well and has a history of running off so I as much as I appreciated Tobi's offer, I thought we could hold on just a little longer.

*He Won!!!*
Linus won the first round and I got to see it and he knew that I, his Dad, a few brothers (others were working), and his Grandparents were all there to see it.  This guy has really had a rough year and to see the look of elation on his face still fills my heart.  Meanwhile, Benjamin had placed his head on his chair and start to beat his head into the chair a little in a stemming way of trying to find comfort.

*checking again*

Benjamin has gotten his head stuck in the chair now, which took a comforting activity straight to a full on meltdown in about 2 seconds flat.  I'm thankful for the noise because everyone around us was blissfully unaware.  Pete and Isaac were over on the side and had been randomly peeking over to make sure Ben was okay, they also knew the noise would be too much.

I'm absolutely torn at this point.  

We've had several tear filled break downs from Linus because of his trying to grapple with all of Ben's difficulties. 

 I get Ben's head free, Tobi is desperate to help, Isaac and Pete are waiting for me to give the signal of what we should do when my Mom says "Let me take him outside" and looks at Ben with the eyes of a Grandma and asks him "Do you want to go outside"?  He settles enough to nod "yes" and takes her hand (Ben doesn't take anyone's hand easily, and only a very few of us can count on him to take it at all).  Off they go and the storm settles a bit.



Tobi went to check on Grandma and Benjamin a few times so I would know if he was melting down on her or okay.  Grandma found a playground and he was playing.  Linus won the next round as well.  His happiness was so fun to watch.  Papa stayed to cheer Linus on with Pete, the boys and I. 

 Linus loved it, LOVED.IT!

*still checking*

For the final round we let Grandma know so that she could watch him get his ribbon.  Pete, Grandma and I all stayed at the door so Benjamin could remain in the hall (where the noise was a bit more muffled)...and he was happy.  When he began to get overwhelmed again, Pete sat down with him and showed him videos on his phone (Ben loves for us to take videos of him and then watch them, it calms him down to see them so Pete and I both have several to chose from when the situation calls for it).  

We could not be more proud of Linus and are so thankful we got to see him enjoy this moment.  If my Mom and Papa had not been there, I would have needed to leave and couldn't have been a part of this, building more frustration for Linus.  It isn't like he needs me to be at everything, but to keep missing everything can be rough on his little heart.  I'm so glad we had this day, and he had the Pinewood Derby.  He absolutely loves Scouts!



This post could have edited out all the Autism and been a great post about a fun day, and that is what I usually do - I crop out, edit out the Autism because what our family takes away from this is all about Linus or the fun we had.  

We don't focus on the Autism, we focus on Ben though. 

 I realize that we've just learned to do this and we dismiss the challenge as par for the course.  The older boys are great, and understand but for Linus it's like ignoring the white elephant in the room and he doesn't understand while he DOES understand. 

 It is hard to explain.  

I plan to share more posts that don't edit out the Autism, but I also will continue with my style of blogging which is to share what we take away from each of these moments as a family because that is only good memories of a time shared together.




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