My Sam has been extra difficult at times lately, anyone who reads here knows the challenges we have seen the last few weeks. Something else is emerging however. Something AMAZING. He has started hugging me! They are still out of the blue without warning. They are still random and completely unexpected. Regardless of when or where or even why they are happening...
I am still getting REAL hugs from Sammy.
Sometimes I forget where the real deficits lay because he talks so much, because of his behaviors, and because I spend so much time focused on fixing the negative stuff. It's so hard to see the stuff that isn't there, until it is actually there. It's hard to prove a negative right? So i often forget where we fall short because if it isn't there it isn't in my face. I didn't realize I wasn't being hugged until I was.
This may disappear. This may be gone in an instant. I want to hold it so tightly in my hand that no one even knows it's there. I want to stop time and never let it move forward. At an age where a lot of boys are starting to think hugging mom is "uncool" my boy has just started. He wraps his arms around me and buries his head in my neck. He snuggles in close and melts into me. He hugs me as though we are the only people in the world at that very moment. When my boy hugs me, I assure you... we are.
I have been puzzling something out. It's hard for me to feel like I don't have the answers. I just don't know what to make of things right now. I can't quiet wrap my head around any of it. Do you think there is such a thing as a Do-Over? Does God really do that? Is it possible? Maybe It's just wishful magical thinking?
On a side note Sammy has been super affectionate lately. He keeps rubbing his cheek against my shoulder when I'm wearing tank tops. It's probably just a a stim but Right now I will take it. I don't really get hugs unless I ask. I will get "hug-kiss-snuggle-hug" before I leave the house every time.
We finished our first week of summer vacation and we have all lived. I think that is an amazing feat in and of itself ! Don't you think so?
Sammy has a behavior protocol at home he earns blocks for every half hour he follows the rules. Good choices,gentle hands,gentle words and respect. today he earned 12 total which has never happened before. However , even though he has the blocks he can count he is obsessing over them. every 2 minutes "how many blocks did I earn now?" over and over and over. enough to drive me insane. I think we may need a timer. Any suggestions?
I want so badly to write a happy post, I do. I feel like sometimes people think my life is always horrible. It isn't I promise. I am just a control freak who likes to micro manage the world around me. I get upset when things aren't my kind of right or perfect.
My friend has a great saying "avoid the wrecking ball at all costs" well....
Easier said than done my friend...easier said than done. However it's just one foot in front of the other
You see, the issue with a wrecking ball is it starts out small. By the time it's this giant mammoth of destruction you have gotten so use to it that it's too late. It's hard to see it with blinders on.
So back to that happy post. I woke up today to some unexpected stuff. While that is downloading and processing I will leave you with this.
This is where Dan found Sam the other day. In , yes IN, the dog food bag with a bag of chips.
The school year ended on Thursday for Sammy and AJ, Tyler is still in until this week. I always forget to do something for Sammy's angels. I always spend the first half of my summer feeling sad and guilty that I forgot to do something for these lovely people who have loved on my son all year long. His team works hard and they listen. We really have been blessed with a fantastic team.
So often we hear parent's of kids like ours complaining about the team they have just not doing enough. I get it, we were there a few years back in a different school district. Now, we are blessed with an amazing team of professionals that love Sammy and work so hard with him.
This year I remembered to do something nice for them all. I made giant GF cupcakes and frosted them with homemade cinnamon chocolate frosting. Sammy made hand prints and I turned them into a hand signing " I love you" I put his name and the year on it. Each person also got a handwritten thank you note. Seriously! I was so proud of myself. Granted they were delivered 20 minutes before the day ended, but still
{this is by far the hardest post I have ever written or published. I am debating if I even have enough strength to publish this one. If your reading this , I must have put it out there. Please, be kind}
this is not my own photo.
Planning what you might ask? Planning time for a nervous breakdown silly!
Yes, just a few days ago I sat at my very own kitchen table trying to see if I could schedule in a convenient time for a nervous breakdown. I don't do messy and I sure as hell don't love unplanned ANYTHING. I figured if I could keep it together until this family I am working with is done I should be fine to take it.
How absolutely control freakish does that sound?I know some of you (family & friends) are reading this thinking I am bat shit nuts! Well, yeah, maybe a little. the bottom line is I feel like there isn't time to go off the deep end. I feel such a weight of responsibility every moment of every day that I literally couldn't even find time to fall apart. Falling apart would also mean having to get messy. So many of you have commented to me about my honesty here at YLMB and I thank you for that. This place here, this sacred piece of space, is mine to deal with my demons. I vent here a lot, but I feel like I owe it to a lot of you as well to let you see all sides of it.
Not a big secret either, that I am Catholic. I talk a lot about my faith and my Savior so what I say next shouldn't surprise anyone.
My dear friend gave me something to try to help me through this, to get the "flame thrower" over the "bic lighter" of God's grace. The issue is never God, the issue is our humanness and the innability to let God into the spaces we need him to be in. Being the controlled person I am I tend to give him very little wiggle room. I love him and I still push him away and fight against him. Totally not proud of those moments , but it is entirely what it is.
So... I worked on this visualization that my friend Michelle had told me about .
What I got was Jesus beside me at the table. I kept expecting him to speak to say SOMETHING!! He didn't he just sat there silently with this look on his face. I don't know how to describe the look I saw but his eyes made me still. My mind was so still for just a moment and I heard this song
and then poof it was gone. I know this sounds crazy to those of you that don't get it. I know to those of you that don't believe in God this must seem like pure foolishness.Regardless, I had to share this because, well, that's what I do here. No filter,no expectations, no limits. If I change that ideal now, then the last few years haven't meant anything.
My darling AJ graduated from middle school on Wednesday. I couldn't be any prouder of that boy than I am now. AJ gives me so much hope for the future. You see, when AJ was younger the doctors didn't think he would really be OK. He was very sick and frail and delayed in his development. He walked late, He talked late and he played late. He never gave up for one second though and was tough as nails from day one.
Band Director and AJ
He is that kid who hears a challenge in phrases like "That is impossible!" More often then not he proves everyone wrong, including me! He is charming, intelligent, thoughtful, and bright! Anyone who says teenagers are a drag have never met my boy. He. Is. Awesome.
Nani and Bapa with the graduate
He received his diploma, a certificate from band, and an award for keeping a 90 or better average through his time in Middle School. It hasn't been the best year for him with one of his teachers. AJ expects perfection from everyone, including himself, so when the teacher kept loosing assignments he got a little...angry. That is now behind us and we are looking forward to all honors and AP classes next year. Sports and Band are also on the top of the list, and secretly momma is hoping he tried out drama club too.
Proud parents and sister
He really is a star and I have to say, despite his issues he is TRULY one of the MOST amazing kids I have ever had the chance to know. I am so glad he is my boy!
Sammy had field day last week. It was held at the rec center since there is no longer a yard at the school now that construction has begun. It was mostly nice. They did have some indoor events which Sammy struggled with. It was loud and hot and muggy. They blew an air-horn to signify change from one event to the next and Sammy covered his ears in pain each time. It bothered me to watch that. Couldn't they come up with something better?
Once we were outside things were better and I could see Sammy's body language relax and settle. He played the first 2 or 3 games fine but during the last one I watched his body language switch. His fingers , which earlier were relaxed and silent, began their flight. A mile a minute. I watched him try to stop and place his hands in the "quiet hands" position I had taught him many years ago. Oh I hate having taught him that. His eyes began to flip around and he flipped up onto his tip toes just ever so slightly. To most people he was just having fun, but I know my boy. he scanned the crowd, he looked for escape, he looked like he was in pain. I mentioned to the parent beside me "Uh-Oh looks like were about to hit a wall". He came to me and buried his head against my chest and took a deep deep breath. He was shaking. He said "this is too much, I want to be done"
My heart was breaking for him. This should be fun! Instead it took all my boy had to be part of it up to this point. I brought him over to his aide Mrs.L. and had him use his words "I am overwhelmed I need a break". Four times he tried and couldn't but the fifth time he did. She told him to take a seat, and I watched his entire body melt. Seconds later they were lining up to get back to school for a cookout. He again started to become upset and bothered. The transitions were not handled smoothly. I reassured him we would meet back at the school and that I would eat with him. He got into line fingers flying beside him hidden to anyone who doesn't yet understand my boy.
I met him at the school, he was under the tree waiting for me. We had a lovely picnic and then played on the playground. He kissed me and said "so glad you came over mommy" He asked his friend A to join us. I really like that kid. He has fantastic manners and social skills and he seems to really like Sammy, quirks and all. We all need a friend that loves us for who we are. Sam has a few. He has Miss S. and Miss L., Mr. M and Mr.A.
I dismissed him from school and he was all smiles. It was the bright spot in our otherwise horrific week.
I struggle with my emotions. I find them hard and cumbersome and bothersome. I hate the fact that every so often I get overwhelmed by random feelings and emotions. I don't know that I have felt any emotion fully since I was about 14 or so. I would much rather pull out my toe nails or file my own teeth than deal with how I "feel". I always think through the feelings to figure out if I should allow myself to feel them.
Is feeling this way expected of me?
Is this feeling justified?
Am I over-reacting?
Am I doing it for attention?
Can it wait until I am alone?
Is it my place to feel this way?
I guess that means I am emotionally stunted in some way. My friend Michelle over at Normal Chaos refers to this as "emotional duct tape" and in a way I guess that is it. I spend so much time thinking about how I am supposed to feel I have forgotten how I am supposed to feel. It has left me feeling keyed up and on edge and frustrated. I want to let go and just cry and I can't. I have tried every single trick I know to help me get it out. Sad songs, sad movies, sad stories, sad books and still nothing, Could I have broken myself?
I so desperately need to cry and let out everything that has been building inside of me for weeks and I can't seem to do it. I can feel the catch in my throat and the sting in my eyes yet it still eludes me
I know it's time to Let it Go but I seem to be wrapped far too tightly to let it happen. This blog is all I have to get my emotions out. The only way I can process what I think and feel is by writing them down. Still the tears won't come and I know they need to. I'm so afraid that they will show up at some crazy time as they have before. Last time I felt this way I began to laugh at something and then it turned into sobbing uncontrollably. I don't want that to happen again... talk about awkward.
Pairing up at PYHO as always, why? cuz Shell rocks
Wood School is being torn down. In just a few short days the old school will be a memory and the new school construction will begin. Sam is having a very difficult time with it. The staff at the school have been so awesome with Sammy. I really feel blessed to have the school community that we do. It's been crappy here so Im going back to the good stuff.
They had their concert this week and it was awesome. Very emotionally charged because of it really being the last concert for Wood School. I watched Sam sing and realised how much fun he has performing. He likes to be on stage and singing or acting. A few years ago I would have said it wasn't possible, but it is now!
He was awesome Nate, Grace, and I watched the concert as they had their snack. Grace didn't finish hers so I left it on the bench. Grace got fidgety. I brought her to the back of the room. We saw Sam in the hall after the concert while they waited to preform the finale. I got a great video of his teacher and him dancing,
When Sammy walked into the room for the finale he grabbed the rest of the bar I left and ate it. His poor teacher panicked. I felt so bad for her. I did make him apologize and he was super embarrassed. He just has absolutely no impulse control. To him he did't do anything wrong since HE knew it was safe. I bet his teacher is glad the year is almost over!
Sam has been having a rough time lately and as a result the entire family has been in a tail spin, I am being bombarded with reports from the bus, from school, from my husband while I am at work. He comes in ans starts bullying his brother or me. He is swearing at EVERYONE any time he gets even slightly frustrated. I am at a loss and I am just plain tired. Tonight he ran away... like really
ran away.
My heart stopped.
What can I do to stop this craziness? How can I protect him from himself? He has no idea what could happen and there isn't any real way i can explain it to him.
I just keep thinking what if he runs away when I am work. What if he runs away and gets hit by a car? What if I have to call the police and they take him away from me?
That last one hits home. I spend every waking moment dealing with this. I am doing my best. I give it every single thing I have in me.
What if it isn't enough?
What if it isn't enough to protect my little fluffy headed Sammy. My sweet boy who often smells like growing grass and smiles with every inch of his body is so vulnerable. So fragile, so...confused and there isn't anything I can do to help him.
No amount of tears will bring him back if something happens. He doesn't know where he lives, he doesn't know his address. He just knows his name and the name of his school, but school is out in just a few days. How am I going to do this? I can deal with the bad behavior, the PICA, the stories, I can deal with the refusals and the frustration. I can deal with it when he can't find the words and he gets so mad he screams. I can deal with the swearing.
I can't deal with the running away, because I have no control. I have no real say. I can't make it better.
I have to install locks he can't reach or unfasten. I need alarms on the windows. How am I going to afford all of this? How can I not do it? his life depends on it at this point.
I love this boy so much and I would do anything to protect him. I am 50+ miles away at work right now and I am so afraid he won't be in his bed in the morning. I would protect him from anyone that ever tried to hurt him. What happens when the person hurting them, is them. WHAT THEN?!
I have been holding on to the paperwork for the Department of Developmental Services for a while now. I keep looking at the web site and thinking about it. I just couldn't make myself do it. It feels like just filling out the papers means it isn't going away.
I know it isn't going away. I know he will always be Sammy and part of him is autism. I know that now, in fact I have known that for a while. This just makes it so in your face real. I put it off because I didn't want him to feel labeled all his life in case the doctors were wrong.
Even though I know they aren't wrong I am still having such a hard time with it.
The bottom line is he needs services, most of which we cannot afford. It's 45$ for each apt for co pay. 10 appointments a month and I can't feed the rest of the kids. We need respite care. I can't keep this up. I will not survive this summer if I don't get help. He has 3 weeks off before summer session. I may just have a nervous breakdown.
So the paperwork is done. It's sitting on my table beside my morning coffee. It took only a few minutes to fill out. Every time I look at it I am overwhelmed by abject fear and grief.
We have been renting a car since our smaller car broke. I only rent it on the days I need to work because Wonder Hubby has to leave when I am just getting out of work. I work over an hour away right now in Newton and Wonder Hubby works almost an hour away in Westwood. He has to be at work for 7:30am and if he leaves any later than 6am he will be late because of the traffic patterns. I get out at 6am and drive to meet him and the kids halfway between the two. It's like a relay race. It sucks but it's life.
So we have been renting a car and it needed to be returned Friday by 5:30pm. I took Grace with me and left the two teens in charge of Thing 3 and Thing4. Thing5 was not happy to get into her seat but we got her in (picture trying to put a cat in a tux) and I was on my way. The kids were all in the yard playing.
20 minutes we were gone.
TWENTY FREEKING MINUTES!!
Daniel and I pull up and see Sammy riding a scooter outside the yard in a small circle. I burst into uncontrollable laughter as did Dan. We parked the van and this is what we saw...
Yup That's Sammy covered in mud from the garden. He was so excited and happy. He looked like a cross between hulk and a hobit! I found mud everywhere, both inside and outside the house. Apparently Ty went inside for something and this was the result.
I received a gift in the mail this week. Completely unexpected and wonderful, more than enough to brighten my day. I follow an amazing blogger named Jess over at Diary of a Mom and she is just incredible. She often makes me cry, always makes me think, and sometimes even makes me giggle. She posted this site back in May for Autism Jewelry and I fell in love with one of the necklaces. Jokingly I posted it to my page and told the world I wanted it for Mother's Day. Never did I think anyone was listening or really paying attention. In fact I think the only response I got was my boss / cousin asking for a diamond tennis bracelet. I forgot about it as Mother's Day came and went.
It's been a rough few weeks here. School transitions, end of year issues,temperature changes, allergies, returning to work, jury duty, and an intensity increase in Sam's fear of water have left me feeling borderline ... well just borderline. I spend much of last weekend contemplating what my family might do if I had a nervous breakdown and ended up in a padded room. I am not kidding, it was that bad. I even at one point just sat down and sobbed hysterically. Not my finest moment for certain and a dear friend (Mr.W) "I did not perform well". I am just exhausted both physically and mentally.
Then this week a package came in the mail addressed to me. I didn't recognize the return address and it wasn't my birthday, I hadn't ordered anything, and I wasn't expecting anything. I opened it to find a beautiful lavender colored box. There was a slip inside with a vague reference to a gift from someone not mentioned and a delay. Still at a loss I looked and found a business card from The Jewel Box Studio. suddenly I remembered the post I made and got super excited. I opened the box and found this
My Beautiful Necklace
It made my day. I still do not know who sent it.
Whoever you are.
Thank you, From the bottom of my shattered heart. It came at a moment when I felt so alone I couldn't breath. I was drowning in self doubt and fear. I will spare you the details of the pity party I was indulging in because those details aren't necessary. What is important is that you know how very grateful I am for this gift. I don't know if it was just a simple gesture on your part or if you really knew how much this would mean to me, it doesn't matter. Thank you so much whoever you are.It.is.beautiful.
Someone pointed out today that I seem to question myself as a mother and they asked if I wanted to change it. I replied that I was working on it, and it was getting better. I thought about it on the way home. I don't know if better is accurate, different for sure but better? Let's be real, it isn't better.
I feel like a failure. I feel like a fraud. I feel like it's all my fault. I second guess everything.
Before Sammy was first diagnosed I thought about what I was doing wrong. What was different about`what I did with Sammy vs. the older boys? Oh I worked, that must be it. I convinced myself that having a job, even though they came with me, must have been the root of it. I worked on a farm (oh how I loved that job) and the kids came too. I didn't leave them and that was awesome but being at work meant I couldn't attend to them the way I would have at home. I was convinced I must have damaged him somehow. When I stopped working I poured myself into him and still I was met by a wall. For years I blamed me, and some of me still does. A lot of me actually. It's better some days than others. Sort of like standing on the beach in the sand, if you get to close to the water the waves sweep the sand away. That wave is my grief over the life my children have, it sometimes comes out of nowhere, like a tsunami. Other times it's like the rising tide on a flat beach that overtakes you when you aren't looking.
The part that is so hard right now is I work now too. I worked when Nate was little too. I work nights. I like my job but I miss my kids. I hate leaving my family to be with someone else's children. It seems so backwards. I feel guilty every time I leave. It hollows me out inside every time. My house is never clean enough. My tone is never calm enough and the laundry is never done.I wonder if that is why Nate is such a handful. I wonder if that is why some people see him as a spoiled brat. It must all be my fault. Am I setting Grace up for the same exact thing in a few years. Am I too indulgent to make up for leaving? Am I trying to make up for Sammy having autism?
I don't hold anyone else to my standard, just me. I just want one day where the demons of self doubt don't chase me. Just. One. Day
Ooch~ Sounds like something you say when you stub your toe or bite your tongue doesn't it? Well, while it may be true that something needs to be muttered when you find the chair leg with your foot in the middle of the night, those words aren't what I'm talking about
OOCH is a performer like I have never seen before. Sam.loves.him.
When I say Sammy loves him, I mean it in the way that most people love chocolate or potato chips or chocolate covered potato chips (*drool*). Can you live without those items...yes , but who wants to?? Life is just more all around fun with them in it. Sam has decided that Ooch is his very best friend and has been the only topic of conversation since seeing him this past Saturday at the Wood School BBQ.
I can't really blame him though. Ooch is pretty nifty. He has hoola-hoops and yo-yo tricks and plays great music and he dances. This guy has charisma coming out his ears! He does stuff with a yo-yo that just amaze Sammy. There are some studies that show kids on the spectrum benefit from yo yo play. I don't know if it's the spinning motion or what, but really who cares. If it makes my boy happy how on Earth can I complain.
Here is an Ooch video for you. check out his skills!
So often it's hard for Sam to enjoy things out of the house. I don't usually take him to a lot of the school events since it's loud and chaotic. We almost didn't go to the BBQ but last minute figured we would chance it. It was a rocky start and an even rockier finish - but what happened in the middle made it all worth it.
We found ourselves on the playground in the rain after a near miss meltdown early into lunch. Sammy couldn't take the noise and the smell and the people and so we went outside to run. Run he did , around and around and around. He did finally calm enough to go back in and finish eating. Then Ooch came on.
At first Sammy stood in the back corner of the room just watching the freeze dance game that Ooch played with everyone. I asked Thing3 to dance with me and he did. Before I knew it he was off in the crowd dancing all on his own. At one point though I did have to stop him from hugging some kids that he didn't really know. He watched everything Ooch did with intense focus, but the real magic happened after. Sam went over and talked to Ooch. Yes Really. He went over and engaged with him. Not just the everyday "I like your dog" or "I am a secret super hero" conversation started but actually went over and talked.
Now I am sure Ooch had no idea what a big deal this was, but I did. Ooch's manager/publicist/agent came over to tell me about it. Denise is total awesomeness as well and she gave me a bunch of info that is so going to help Thing3.
So often we forget about the daily impact on these kids by the things around them. Ooch knows he can make an impact, and does. His personality and attitude are amazing. Not once did he ever seem bothered or bugged by the kids. Not even when the show was over and a few kids (read Sammy and Nate) took out the hoola-hoops again. Sammy had 2 of them and rather than take them away Ooch stood by Sammy. He told Sam "Show me what you got" and Sam spun the hoops around and even kept them up for a little bit. Ooch applauded and complimented Sammy. Sam was GLOWING and talked about it all the way home. Since Saturday he has mentioned it 5 bazillion times! "Hey mom, remember when Ooch let me do the hoola-hoops and I kept them going? He's my best friend."
I know this is Ooch's job and he is nice to all the kids. He may be this way with every kid, but every kid is not my Sammy. To see the smile on my boy's face, to see him really happy... made the entire weekend drama worth it.
So Thank You OOCH for being so awesome. You really made Sam's Day
Taking Sam to the dentist is not the easiest feat to accomplish. He gets anxious and upset easily when out in public. He also doesn't like not being in control, or being touched, or sitting still, or doing anything outside of the "plan". Four years later and I still hear " Mom?! I have school today?!?" laced with both fear and curiosity. No amount of visual aid seems to stop it. He asks compulsively. So for those reasons you can understand why taking him to the dentist Saturday morning wasn't on my list of Fun Things To Do. In fact I would rather brush my teeth with sandpaper or put a jelly fish in an evening gown than take the boy to the dentist.
You see our pediatric dentist (WHO WAS AWESOME BTW) retired a bit ago and I do not like the replacement. MY dentist office Perfect Smiles Dentistry has been fantastic dealing with my level of crazy at the dentist. You see they cater to people like me who are afraid of dental work. I don't mean just a little afraid, what I mean is I can't even make an appointment without throwing up. Well, I can now actually thanks to this office making me feel 100% safe. When I found out they had hired a pediatric dentist I made an appointment for Thing3.
They were AWESOME with him. they explained everything step by step. I reminded the woman at the desk that Sam was autistic and she responded with a smile and "yes, we were talking about him this morning so the entire staff was aware" That alone made me feel so much better. Then, the hygienist began talking to him. She didn't talk to me about him, she spoke TO him. Mom's know this is a big big deal. She did talk a little to fast for Sammy to really get what she was saying, but she was engaging so he was happy.
The Dentist came in and again Spoke to Sammy, showed him each tool, spoke slowly, and moved slowly. We have a treatment plan in place for Sammy now and will be going back there in just a few weeks. They did such a wonderful job. If your in the Wesport MA or Seekonk MA area with a special kid, this is the place to take them. We even talked about Grace's lip tie and he actually had knowledge on the subject. So go ahead and check out Dr Ahearn and Associates at Perfect Smiles
Sammy picked out his toy from the treasure box and all was well.
Mom - First breakfast then cocobar. Waffles or fruit?
Sam - Want cocobar (screaming now)
Dad - Cereal?
Sam - Momm said wapples!!!!!!!!!!!!
mom - Ok want waffles!
Sam - NO MY HATE WAFFLES WANT COCO BAR
Mom - first breafast then coco bar. waffles or fruit
Sam - Wapples..... and syrup
yay! of course daddy had to make them since now mommy said no coco bar. he ate his waffles and now happily stimming with his horse
fyi coco bars are not candy bars but snack/cereal bars that are gf/cf and he LOVES them
Another post like last night sam asked "my heart in there?" while pointing to my chest. he meant to say "your heart " Im sure but none the less...the moment was amazing. I just wish he could tell me he loves me...i tell him and he ssays "hanksss mum"(thanks mom)
It is amazing how far we have come. but with the drama here today i am reminded how far we still have to go.
Many years ago autism was my sun. My entire world revolved around it. I ate slept and breathed it. Autism ate me from the inside. It was like my own personal zombiepocolypse! I couldn't go a moment without it intruding onto my thoughts, my heart and even my dreams. It was the center of my universe.
That was a lifetime ago. It isn't that way anymore. It is now just a moon trailing around my lazy little planet full of chaos. It's there, but it only comes out when it is dark. it hides when I am not looking at it. Sometimes i forget it's there. Until it gets dark and then all bets are off.
I look forward to the day when it's just a distant twinkling in the sky of some far off star. When the moons around my little planet are just my babies.
Someday...
But until then I watch the moon each night as it waxes and wanes. I sit in silent awe of the beauty and stillness that can surround it. I listen and I feel and I hope and I dream. I know that even if it is always so close I can taste it, that it will all be more than ok. Because this... this is my life, my world and I say so.
I can't help but smile at my boy when he gives me his goofy grin, just like the man on the moon. He's there even if you cant always see him
When I talk to people out in the community about Sam I always get the same look. Other special needs parents know the look I am talking about. The look that says "OHYOUPOORTHINGIHAVENOIDEAWHATTOSAYNOW" and is almost always followed by "everything happens for a reason" or "God doesn't give you more than you can handle"
I know people just want to be nice or say something clever and sweet, but we have all heard it. I think , personally, the tone used upsets me more than anything really.
I don't want to be your martyr, I don't want to be your poor thing. I want you to understand that this is not a death sentence, it's autism. We live with it every day. It sucks and it's hard but that is ok.
When you have special needs children , you don't take things for granted the same way other people might. I don't assume my kids will walk and talk on time. It's always a huge relief when they do. I watch all the kids move through their developmental milestones and I check them off my list. Like a constant imaginary check list only I can see.
eye contact ...ehhh check
play skills .. yup check
responds to name... check
points... CHECK!
I still watch with an over critical eye. Nate has some weird things he likes to do. I worry I am missing something. he will screech for no reason and then go back to playing. He will verbally stim on silly words and get stuck on other words or sounds and just repeat them. I find him lining up stuff and he can be so very rigid in his thinking. He has sensory issues and hates socks just like Sammy too.
It could be personality. He is a headstrong little guy. He is too social for me to really worry. He warms up slowly but once he is comfortable - watch out! I am so scared I am going to miss something. How much is just what he has learned from Sammy? How much is just adaptive behavior to deal with the chaos that Sammy brings to our house? How much is an issue?
What if I miss it again?
I watch Grace and I go through the same list. What if I am wrong? Again.
The upswing to this is that every single milestone seems so huge. I am aware and focused on them. I enjoy watching the children work to acquire the new skills. It's like every day is Christmas here. I don't know if I would ever have thought this way without Sammy and his issues. How can someone feel so happy and so sad at the same time? Nothing in life is ever just sweet anymore though. There is always a bitter edge to any accomplishment.
I have been watching Nate slowly pass Sammy and that is getting difficult. Sammy can see some of it and he is frustrated too. Sam works so hard, it's just easier for Nate. What is going to happen when Grace passes Sammy too?
Until we get there I won't worry too much. I will just try to relax and enjoy where we are. I don't assume tomorrow brings anything, but I am always hopeful.
Sammy has some sensory issues, well a lot of sensory issues actually. He has a lot of rules for clothing, especially pants. His pants have to have a drawstring, be soft, no buttons (not even fake ones), elastic waist, he prefers them to be blue and they cannot make any noise. I bought 5 of the same pants to add to his other 3 pairs he would agree to wear.
I am down to 2 pairs. I don't know where they are going but they aren't in the laundry, or in the bathroom, or in his room... or anywhere I can think of. God i hope he isn't throwing them away!
We had a similar issue with his socks. he would go to school with them and then come home without. It took forever and some stealth work but we figured out he took them off at lunch and threw them away. He obviously cannot do that with his pants.
So where are they going?
Our neighbor's have a cat named Rylie. He is a great hunter. He leaves us mice and bird halves all the time. This is the cat that would scare Chance just by looking at him. Chance doesn't seem too spooked by him these days thankfully! Well tonight I heard my neighbor yelling for my older kids. I assumed Sammy had gotten out and was having an issue. I knew it was quiet possible that Sammy was just outside ...naked
Turns out the cat caught a bunny. Itty bitty baby bunny. Poor thing is hurt and has some superficial wounds along its body and its head. It's the sweetest thing I have ever seen. I didn't know what to do. Then I thought Cat the Dog Officer she will no doubt know what to do. She is awesome! We called the animal control officer but her office was closed. Then the vet down the street that wouldn't touch it because it's wildlife. then MSPCA and then a wildlife rescue. lots of messages and such.
Sammy has fallen in love with the bunny. He was holding it and talking to it. He can be such a ray of total sunshine here. I just hope baby bunny makes it through the night since it will be the first thing Sam looks for in the morning.
Sometimes I get rainbows with Sammy. It's as if the windows fly open on a warm summer morning by the ocean. The breeze comes in and calms my soul, quiets my mind and helps me to see the flowers that bloom in my life. Flowers like my precious boy, so proud of himself. He cut his hair, all by himself.
I was so frustrated at first, and also pretty angry! He was a little sad he cut his superman curl (the curl under his bangs and the only curl on his entire head) He showed everyone how he cut his hair all by himself! I have never seen that boy so proud of himself. He went to school with it as is since he wont let me fix it. I really hope the kids don't tease him.
He was giving out shopping carts at Market Basket yesterday as well, just so he could let people know that he cut his own hair.
fluffy head before
after ~ with daddy's glasses too!
I am blessed with a boy who has sunshine moments inside of some rather dark days. I am blessed with a breeze today.
I am back at work this week for the first time in months. I have the most amazing sweet family that I am working with and the most beautiful little itty bitty babies. For those of you new here I work overnights for So Many Babies. We work with twins and triplets overnight and help moms and dads manage their nights with multiple babies. I like what I do. I just dont like being tired all the time. Being the first week back it's been hard here.
my level of frustration is rising and I can't get ahead of it. Yesterday as I napped, Hubby had the kids totally under control. Or so I thought. Sammy came up just a bit after I fell asleep with his hair clumpy cut short. I cant win I guess.
One of our cars (The Mazda) died on my way to work last night. In fact I was 1.7 miles away from my destination. The car didn't care it just revved loudly but would not budge. I left it in the gas station parking lot that it was so gracious to drift into. I walked the rest of the way to work since it would take longer for my husband to get me than it would to just go to work since I live well over an hour from the family I am helping right now
begin comedy of errors...
My boss was going to pick me up in the morning so at least I could get home. She was also going to drive me tonight since she was going the same direction. My husband called and reinstated our AAA that we had cancelled a few months ago. He would pick me up from the park and ride and bring me home , go to work late, and then go meet AAA after work.
My mom had the kids. Dan forgot to pack Sam's lunch. I had no car. My mom saved the day and brought him a lunch. I was so tired from working overnight that I was cranky with Nate. I may or may not have lost my temper when he woke her 35 minutes into her nap. I had to deal with some other work drama and figure out how to get home the next morning without making hubby late.
He called me on his way up to the car and asked where the keys were. I swore and cussed and cried, convinced I had them (turns out I left them in the ignition). I was a mess and just couldn't stop the panic. He came home. He rented me a car. he saved my ass, as usual. Thank GOD FOR MY LEVEL HEADED HUSBAND!
He got the children in the van (well Sammy and Grace anyway. Nate fell asleep beside me while I napped before work) We all drove towards my work. It was raining so hard and I was a nervous wreck. Weather of any kind makes me on edge. I suddenly pictured an accident and Sammy not being buckled. My heart raced and I got very nervous. All I could think was part of my heart is in that van. Sammy, Grace, and Daniel. The entire way up I just kept thinking how odd it seemed to watch my heart outside my body traveling away in the van.
We ventured out this weekend with the Dog and the children. Tyler had a wrestling clinic Saturday so we all went to bring him up to Bristol Aggie in Dighton. We walked everywhere and checked out all the animals. chance met cows, horses, and piglets. He did wonderfully. Sammy ran and ran and ran. He rolled down the hill by the baseball field. Sam, Nate, and AJ rolled and rolled. AJ may or may not have actually gotten dizzy this time.
We met a beautiful horse that was huge and very calm. He stood there and let Chance come to him and say hello. He bent over and nuzzled Sammy. We really enjoyed the walk. The boys fed the cows and the horse grass. They ran all over the place and picked buttercups.
The wrestling program had free watermelon and so the boys (and girl) enjoyed some. Even Chance had some watermelon. We got in the van and headed home to prepare for AJ's party that night. It really was a wonderful afternoon!
I am in my room, resting and having some quiet time. I cuddled with Nate and Grace this morning and then dan went downstairs to take care of the kitchen (AJ's party was last night so the kitchen isn't as clean as I would like). He is making coffee.
30 seconds into my mother's day back rub and Nate starts screeching and crying. that was 9 minutes ago. So far now Sammy is melting down, Grace is screaming, and all hell is breaking loose downstairs. Yes, this is my mother's day.
Daniel just brought me up a cup of coffee and when I asked what was going on he said "nothing everything is fine" and ran out of the room. I assume if there was blood or disembowelment I would know. RIGHT ?
So I am trying to be good and stay here like a good girl. I don't want to ruin their mother's day for me. God help me we have a christening and a first communion today, AJ's birthday, and Emily's (Tyler's girlfriend) confirmation.
Sammy is now screaming as though he has been possessed in the next room. Grace is screaming because Sam is.
turns out Sammy lost the card he made me and is freaking out.
THIS is my mother's day what is your like today?
I'm trying to write this down this morning before I forget what was said. Sadly I have already kind of forgotten. It was amazing and made me smile. Sammy woke up and gave us a rare show of sunshine. He is currently down stairs screaming that he isn't going today with the rest of us for the hike we planned. He is refusing again and non-compliant. I think the function of his behaviors lately are control. He cannot control the fact that his school is changing, his teachers will change, and his aid may even change, so he tries to control other things.
He was in our bed this morning. Nate was in our bed this morning. Grace was in our bed this morning. Chance was in our bed this morning. WE HAVE A QUEEN SIZE BED. I was complaining to Dan about how I had no room most of the night since Nate was on one side, Sammy was on the other and Grace was on top. Chance woke me up getting in after Tyler let him out from his kennel. Sammy looked at me and said
"Wow your a lucky Mommy, you get to cuddle all of us!"
It's been a crazy week here. Tantrums, refusals, non compliance and angry outbursts. I'm writing to forget about what this week is like. I need to get out of my own way.I don't know where this post is going. I don't know what to write. I just know I need to write.
Where did this began? How did I get here?
I can sugar coat the world I was in or I can be real. This life here, as difficult as it is now, is still easier than my life before. It's still brighter and less emotionally taxing then the way things felt before Sammy, before Autism.
Yet the life I was living so many years ago before was filled with shadow and pain. I was broken inside. My life before Dan, Sam, Nate and Grace was a blue vase. I can't say I loved it. I didn't. I wanted to run from it every day. I hated the life I was living and some nights I went to bed praying that God would take me in my sleep so I wouldn't have to face another day. I was desperate, I was broken, and I wanted out.
Things fell apart and I fell deeper. I felt like I was underground walking through mud. I felt scared and lonely all the time. I had no direction. I couldn't breath. I made a lot of mistakes, I hurt people. I hurt myself. I allowed too much and never put my foot down. I was scared all the time. My blue vase was shattered into a thousand nasty little sharp pieces. I was angry at everyone. I was angry at God. I was , most of all, angry at me.I lived it , but I didn't "get it" I had an older son with Aspergers but the effect of it was minimal. It wasn't real because it didn't really change anything. He was in 3rd grade by the time we knew anything was really up. It didn't hit me like the freight train Sammy's diagnosis did.
I found direction a few years later. I found my strength and started moving towards the life I have now. I discovered in the space between that I am far stronger than I even give myself credit for. I found my faith and made peace with God. I took some extra deep breaths. God fixed my vase, and made a beautiful blue serving platter. Now it doesn't just hold the things I like, it serves everyone around me.
then Sam was diagnosed. It shattered me, or so I thought. I thought my beautiful blue serving tray had been broken, it wasn't. Everything is just the way it should be here. Sammy is wonderfully made and who he is. It is Sammy (and this blog) that brought people to me. i wish Sammy didn't have to hurt and struggle. I wish it was easier for him. I wish I was a better mom for him some days.
I am working through where I was so I can get to where I need to be. I have found, on this journey that It isn't always the strength that matters. Sometimes, we have to be soft and malleable so that we can accept, adapt, and move on.
I have love now. I have safety.I spent a long time being super strong and guarding my emotions. I didn't cry, I didn't feel, and sometimes I didn't sleep. Since having Grace, I have found a softer side that I wasn't sure I had, there may even be a few bunnies having tea around here.
So even though my week has been hellish and I want to pull my hair out, I have also been very blessed and loved this week. No matter how bad it gets here, even at it's darkest hour, it is still far better now than it ever was then.
Wasn't I just writing yesterday about feeling like Sammy isn't autistic? Sometimes I feel like I don't fit into the whole autism community because Sam "seems so normal" Then we have moments like last night.
He couldn't sleep it was well past midnight and here he was flapping away and making noises. I haven't seen him do that in weeks maybe even a month, so it was weird to see him doing it. In fact I couldn't figure out what was shaking the bed until I looked over and saw him.
We got Chance to lay with him. just calling Chance over and having him follow Sammy to bed, he was thrilled. He pranced over and laid down beside Sammy, snuggled up, and helped him settle. Dan covered them both with the blanket and they laid down quietly. A few minutes later and Sammy was asleep.Chance then went to his kennel for the night without an issue.
Chance hanging out in his kennel
He helped us wake him again today and Sammy got dressed and ready in just a few minutes without a huge fight. We were late waking up since my wonderful Tyler took my phone downstairs and so I had no alarm. I woke up to AJ leaving the house and slamming the door at 7:35! Sammy has to be at Ms. L's for 7:55 to go with them to the stop. 20 minutes to get Sammy up,dressed,fed,packed and out the door. I couldn't find his homework since it wasn't put back in the folder and that took a bit of time. He did it Chance followed him around the upstairs the entire time he was getting ready.
Here is to hoping tonight he goes to bed a little easier.
Sometimes I feel like a fraud. Somewhere in my head I still feel like Sammy isn't autistic they must have been wrong. How the hell am I still in denial; all these years later? Seriously, it does't make sense.
He gets so much help at school, he cannot regulate himself, he scripts, he stims, he has PICA, he spoke almost entirely in movie quotes until he was well over 4, he makes fleeting eye contact, his social pragmatics are so poor he couldn't even get a a score and yet I wonder. Yet somewhere inside I wonder if it's in my head, if he really is fine and it's me who is the mess.
Then we have nights like tonight, along with days like today, and weeks like this week that remind me like ice water in my face that, yes, he is autistic. I don't want to negate his struggles by saying "well he is high functioning" because every time people hear that they think "it isn't too bad then"
But days like today SUCK.
Weeks like this SUCK
and I don't know what to do. I can't be a super hero.
I don't want people to think I am always negative, or always sad, or hopeless. I know tomorrow could be better, but I don't want to get my hopes up.
All I can say for this evening is Thank God for Chance
Sammy fell asleep and woke up nasty. Screaming and crying, curled in a ball and rocking. He couldn't stop. We tried a snack, we tried some sweets...nothing.
Then Chance came in the room rested his head against Sammy and instantly Sammy stopped , snuggled in the Chance and was giggling at the "pee fountain" he made a few seconds later (in the bathroom). He flipped out over his homework and again Chance sat beside him. He was calm, he got it done.
It isn't times like this that I doubt his autism, it's the good times. When he tells me a story that makes sense, or when he really connects. Those moments are a gift and instead I allow my emotional baggage to come in take over and create doubt. People that know him don't doubt his autism... but all these years later I still do.
Ok so maybe her name isn't really my ponytail but that is what Sammy called her after the first time he met her. This woman is so awesome and I can't even tell you how much we love her. She came for dinner and had the chance to see Sammy just being the whirling dervish that he is. She didn't bat an eye, in fact she pointed out all the amazing things Sammy was doing. She has helped us come up with behavior protocols and changes for him. Without her we would probably still be crying in our soup trying to figure out how to work with Sammy at home and this year when things got ugly, she was there to help and support me.
Every once in a while you meet someone that you know loves you and will be there for you no matter what. Well now, not only is she that person for me but also my boy. I can't begin to explain how loved I feel just knowing she is an Angel in our corner.
She wrote this for us...
On Saturday April 28th, my friends and I ran (read: walked :) ) in the 3rd annual Las Vegas Race for Hope; a 5K race that benefits families with Autism and raises awareness and education. This race is sponsored every year by the Grant A Gift Autism foundation and has grown in numbers each year. This was my first year participating in the event and I even made my own team! (this sounds easy, but let me tell you, managing adults is much harder than managing kids!) We walked in honor of Sam. Beautiful, wonderful, amazing Sammy who has changed my life in so many ways.
The money from this event goes to benefit families in Nevada so it may seem odd that our team was named "For Sammy" who lives in Massachusetts. For me, it didn't matter that the money raised at this event wouldn't make it to Sammy. For me it wasn't really about the money (although it's a really great thing for families who need help). For me it was about spreading awareness and education. For me it was about making people understand. For me it was about putting a face to that 1 in 88.
You see, Sammy was the first person I ever knew who had autism that wasn't a student or client. Sammy was the first person I loved who had autism. Sammy was the first person who made me see it all differently. Anne and I have known each other for many years and we have always been close. So when I found out about Sam's autism, I made it a point to do everything I could to help, everything I could to make this journey a little easier for Anne and her family.
Sam is the face I see when people say "1 in 88". This family is the family I think about when I walk, run or volunteer at events...regardless of where they are. Sam is the voice I hear saying "my love you my ponytail" (his affectionate nickname for me) when people say "I can't imagine living with this every day".
So, even though I work with kids every day who are affected by autism, Sammy is my 1 in 88. And I wanted people to know him.
So on that Saturday we walked. Me, my husband and my friends who had never met Sammy. They all sacrificed their time. They all walked, ran and jogged.
It was hot. People had allergies. People had bad knees. People had little ones and no baby sitters. People were tired (ok ok, its Vegas, they were hung over).
But they all walked. Not one of them took a short cut. Not one of them decided to do the "fun mile" instead of the 5k. Not one of them complained. They all finished. With a smile.
One of my friends said to someone who tried to convince her to take a shortcut "this kid we're walking for can't quit his autism so why should I quit this race because my knee hurts?"
I cried.
I cried because she doesn't know Sam or his struggles or what he goes through every day just to get dressed.
I cried because even though Sam wasn't there to see it, he had a group of amazing people walking to support him, running to educate people, limping to let them know that he has a team behind him every day! Even though he can't see them...they are there. And now they have a 1 in 88 too.
I'd walk a thousand miles for Sammy. I love him. He's my 1 in a million :)
He's my 1 in 88.
Who's yours?
linking up with Just Write over at The Extraordinary Ordinary
