Wednesday, February 20, 2013

Questions and comments

I never mind it at all when people ask me questions about Nick and his Autism.  I'd very much rather have them do that than for them to jump to conclusions about any behaviors he's exhibiting in public or anything like that.  The more people know about Autism and realize just how common it is and how so many people have it the more acceptance there should be about it.  That's something I hope for in any case.

I've given it some thought and here are some of the questions/comments that have been addressed to me that have stood out over the years:

- "Does he allow people to touch him?"   This one has been asked by hairdressers, doctors, and respite workers who are about to work with Nick for the first time.  It's really a good  and fair question and definitely one that I would either ask or think to ask if I was dealing with a child on the spectrum that I don't know.  Nick is a very touchy-feely kid and loves to be touched.  If it's someone who is cutting his hair or giving him a medical exam they may not see that side of him, but it's really there.  He loves to give hugs and kisses and to be on the receiving end of those as well.  He's not one who is OK with just anyone doing that if he doesn't know them but if he knows and cares about you he's all for it.  Often he needs to be prompted by me to do that when we're leaving a family gathering or saying goodbye to a friend after a visit but if he didn't want to do it he'd let me know, trust me on that.  I'm the lucky person who gets the lion's share of his kisses and love and I cannot say enough about how much I love that.  He's not able to tell me that he loves me so that sweet affection he shows me constantly is his way of saying those words and letting me know.  It's pure joy for me, plain and simple.

-"When did you know he was autistic?"   Nick wasn't officially diagnosed until May 2005 but I had a feeling that something was, well, "off" about him for a while leading up to that.  At his two year check up appointment back in August the previous year I mentioned to his pediatrician that I was worried that his speech wasn't progressing the way I had thought that it should.  That was all that I had really noticed at the time that was different about him.  Others noticed more and so did the doctor.  She told me that if he didn't start putting two words together by the time he was 2 1/2 that she wanted me to bring him back in.  I failed to notice his lack of eye contact, reluctance to play with others or practice pretend play and a few other things that people like his babysitter at the time saw.  Now I curse myself for what seems like ignorance but I am sure that some of that was me being in denial and hoping whatever was different about my boy was something as common as a speech delay.  His father talked late and when I expressed my concern about Nick doing that I remember people telling me that boys tend to begin talking later than girls and that Einstein didn't talk until he was 3 years old or something.    As time went on into fall and winter of 2004/early 2005 I began to get scared.  In April I contacted the local regional center and set up an appointment to have him evaluated by a speech therapist.  That really was one of the darkest days that I can ever remember.  After a two hour evaluation she concluded that my son who was 2 years and 8 months at that point had the speech ability and cognitive understanding level of a 9 month old.  I didn't know what to say so I just sat there and cried my eyes out.  The speech therapist was wonderful and very understanding.  She encouraged me to follow up on having him seen by a developmental specialist and have him officially diagnosed so he can get the services that he needs.  We were fast tracked into the system and put on a waiting list for in-home therapy.  I do feel a certain level of guilt that the wool that I pulled over my own eyes didn't allow me to see the signs that quite a few other people saw and I am sure that will always be there.  It's something that I have to live with and I am really grateful for the early intervention services he received that helped him in so many ways. 

- "Is he ever violent with you or others?"  On occasion, yes, he has been.  With me he was rough towards  me during the three periods of time that I was the most stressed, sad, and distracted about my mom's failing health.  My mom was diagnosed with bladder cancer in 2006 and that was the first time he showed any tendency to physically hurt me.  Once treatments began for her and I relaxed and held out hope that she was going to be okay he began to revert back to his normal sweet self with me.  A year later her cancer returned and I was a wreck once again.   As if on cue he began to lash out towards me once more.  I tried not to show my sadness or signs of stress around him but he's far too in tuned with me not to notice.  When she passed in December 2008 it began again and was by far the longest lasting and the hardest to take.  I know he was sad and confused and couldn't articulate what he was feeling.  Plus I had the very distinct feeling he was mad at me for not taking him to see her too.  He'd show others her picture and say "please" as if he thought that someone else would take him to see her and do what I wouldn't, or in this case couldn't, do.  It was a rough time for all of us and even harder on him because of his inability to ask the tons of questions children about about death.

As far as him doing that to other people he emerged as THE problem child in school at one point and began to lash out at his fellow classmates, teacher, and aides. That happened during a brief and odd adjustment period he went through at the beginning of this past school year.  It came out of nowhere and surprised everyone, especially me.  Everyone who knows him was confused by that as well.. that's not his usual behavior at all.  His teacher and I began to correspond on a nearly daily basis and we tried all weapons in our arsenals to get him to stop.  He'd lose his television and iPad privileges at home and wouldn't be allowed access to his favorite toys, games, or his walking time while at school.  We worked in tandem, his teacher and I, to let him know that there will be consequences for that type of behavior in any setting.  What began was a period where he'd lash out at someone and get into trouble for it.  He'd go a day or two without his favorite things at home and at school and seem to learn from it and then do it again a week or so later.  This went on for over two months until his November break from school.  When he went back all of that behavior had stopped and he hasn't done it since except for one day a few weeks ago. 

- "Will he ever talk?"    This, obviously, is the hardest one to answer.  I cannot predict what's going to happen for him in the future.  I have felt a certain amount of discouragement that he hasn't made a lot of progress in this area, to be honest.  I'd love for him to speak more and feel like he has a lot to say but just lacks the ability to bring those words forth.  His teacher  is able to get more words out of him at school than we do at home and that is frustrating as all get out.  I think he believes that he needs to talk more there and we just understand what he needs at home so why bother.  We really do our best to get words out of him and applaud him whenever he says something that's not in his little repertoire of words. I cannot let myself lose hope that he'll be able to express himself more as he gets older.  Do I think he'll talk like a typically developed person or one with high-functioning Autism?  No.  Do I care?  Yes, but I'll accept whatever vocal level he gets to and we'll make due.  That's really all you can do.  I'm not a huge Bruce Springsteen fan but one lyric from a song of his stands out when I think of how I feel about Nick's differing abilities.  It's from his song "Tunnel of Love" and he sings about how you've got to learn to live with what you can't rise above.   I don't have a magic wand to change anything and learning to accept and live with - but not give up hope that things will change- is really all you can do.

- "Well,  he doesn't look autistic!"    Oh boy.. I saved my favorite for the last.  This comment bugs me like you wouldn't believe.  I haven't had this said to me in a long time but I remember thinking each time someone said that that the person who was speaking really didn't seem to know their ass from a hole in the ground.  Autism isn't like Down's syndrome where that is more noticeable to people.  Millions of people are on the spectrum and it isn't something that is discernible by any physical characteristics.  Autistic people look like everyone else.  They blend in physically for the most part because they're not that much different in looks than their typically developed counterparts.  They can show behaviors that set them apart from others but nothing about how they look screams Autism.  Some of the most beautiful children I've ever seen have been autistic.  They have the sweetest faces with the most contagious smiles.  If there is a next time that anyone does say this to me I'll ask them to Google "What autism looks like" so they can see for themselves that there isn't a difference.  Or tell them to look around them.  With the statistics being as high as they are I am quite certain they come into contact with someone on the spectrum often.  They may be high-functioning or have classic Autism, it doesn't matter.. they look like individuals like we all do. 

Wednesday, February 13, 2013

All about the cuteness that is my Nick

I love to talk about my child to just about anyone who will listen, or in this case read.  I do write/talk of his Autism, but I'd rather for the most part focus on who he is a person.  I don't like to identify him as being autistic, more that he has Autism.   If that sounds confusing - and it even does to me sometimes - let me clarify.  Autism is something he has, but there is much more to him than being an autistic boy.  He has so many other facets to him.  Some of his personality quirks come from the fact that he does have Autism but like I said, he's so much more than that.

Here are a few tidbits about my sweet boy:

- He's an only child:  I never intended to have an only but that's just the way things worked out.  People sometimes still ask me if I ever plan to have another and the answer for the last 5 years or so has been a big, fat, "no!" Actually that's not completely true.. my reaction depends on how well I know the person asking that.. if it's a stranger or someone I don't know well they get the aforementioned answer.  If I know the person better and I don't think my true reaction of , "Are you f*cking kidding me?" would offend I say that instead.   I was on the fence about having another even prior to his diagnosis and that did factor into our decision to not have any more children, but it wasn't the only reason.  I have to admit that I did think and worry about the statistics of producing future children that would be diagnosed with an ASD.  I think that's normal because the stats are pretty high, but it's not a for sure thing either that that would've happened if we had had another.  I know of plenty of families who have both typically developed children and children with Autism. I just keep seeing what to me were signs that sticking with having Nick as our only was the way to go for our little family.  No real regrets though so far.  Sometimes I wonder if we made the right decision or not, but what's done is done and there are no more babies on the horizon for us.  Nick keeps me on my toes and fills my heart with so much love that he's enough for me.  Corny but true.

-He's my very own version of Pigpen:  Like Charlie Brown I have a little tornado of dirt and crumbs in my life.  Each time I see Pigpen I truly think of my boy.  Messes just seem to follow him wherever he goes. The minute he comes home from school dirt just magically seems to appear and disarray is everywhere.   If I was a true neat freak I would be following him around with a dust buster for sure.  I like things to be clean and neat but I really don't need that all of the time. That's a good thing too because this is a battle I couldn't win and with my son I truly believe in picking my battles.  As he's gotten older he's been better about picking up after himself on occasion.  When he does it without being asked it makes me so happy and he loves the praise I heap on him when that happens.  It rarely does but that's okay.. it DOES happen from time to time so I have hope it'll happen more often someday.

- He loves him some spicy food:  I've never known a child who loves tangy, zesty  food as much as my child.  I can blame myself for that too.  Until I was pregnant with him I never liked spicy food.. at all.  Suddenly I was smothering my food in hot sauces and craving the heat while carrying him.  Nick started wanting hot sauce on things like chicken strips and french fries when he was about 5 or 6.  Now we go through a large bottle of Frank's Red Hot about once a month.  It makes him happy and I've never noticed any digestive distress with him eating like that so I don't mind him doing that.  It is pretty funny to see the stares he gets if he does that in public though!

- He's got an incredible sense of humor:  I've often referred to him as a (mostly) non-verbal smartass and it's really true.  He loves to both laugh at people and at himself.  Nearly all of the people who've worked with him - therapists, teachers, and babysitters alike - have mentioned that about him.  Sometimes when I am in the middle of doing something like cooking he'll take something that I have set aside and need and hide it from me.  There's no malice in that, that's just Nick being a little stinker and trying to play a trick on me.  The minute he sees me looking for what he's put somewhere else he begins to giggle.  Also, if he knows you don't want him to do something that's generally minor in nature he will do it and give you a smile with twinkling eyes that tells you that he knows EXACTLY what he's doing and is amused with himself.  Total smartass he is!  I'd like to just blame his dad when it comes to this but that wouldn't be completely true at all.  Poor kid has it on both sides like poor eyesight and a hard-headed nature.

There are so many little things about Nick that I love to share and will do that too.  He fascinates me and I've often said that I'd give anything to be able to climb inside his brain and spend some time there.  I think it would help me understand him better and I could pass that information on to others that interact with him as well.  Obviously that's not possible, but it is a nice wish to have. 

Wednesday, February 6, 2013

Well, here I venture back to blogging. I've missed writing and thought I'd start fresh with a brand new blog.

When I blogged before I did it as My piece of the puzzle. I kept that blog off and on for about three years. I started it when my son was just shy of turning five and he's 10 years old now. I began blogging to chronicle my son's progress as he grew and to talk about our life as we dealt with raising a child with Autism. Along the way I wrote of my mom's cancer returning and presenting itself as a terminal case and her subsequent fight and loss to that disease. I wrote entries as I tried to forage ahead with a new and different life without the person who was our strongest source of support. I posted about losing my dog of over 15 years and how losing him was hard and how I tried to not dwell on his loss. A coping mechanism kicked in and I instead did my best to focus on how lucky we were to be blessed with the wonderfulness that was Gizmo for so long. Somewhere along the way I began to lose interest in writing for a blog that was associated with some of the darkest times of my life so I stopped. Well, that and life interfered and made writing a harder task to do. Life is still hectic, but now I am trying to make time to do this. Sooo.. here I am writing again and hoping I will enjoy it as much as I did before.

 Here's an into or a refresher if you had read my old blog:  My name is Renee and I am the mother to a sweet, goofball of a boy named Nick. He is the most loving person I've ever known in my life and for the most part just radiates happiness and joy. He's an only child and the focus of my life as it should be. He was diagnosed with Autism in May 2005 three months before his 3rd birthday. He began intensive in-home therapy that lasted until he began kindergarten and resumed for a few years after that after school. ABA (applied behavioral analysis) therapy made a HUGE difference in his behaviors and greatly improved his attention span to the point where he could sit still and focus in a classroom setting. Without all of that therapy I shudder to think how he would be today. He lacks the verbal ability to communicate on his own and uses either a speech program on his iPad or my phone or PECS (picture exchange communication system) cards at school to get his needs across. I had hoped by this point that he would be more verbal but he has yet to progress to the level where communicating with him is an easy task for most to do. I accept him as he is and refuse to give up hope that more words will come as he gets older. If they don't we'll deal with it because we really don't have a choice, but I hold out hope that they do. A blogger I follow recently said something that struck with me. He said that he loves his son but hates the autism. I can relate as I find it very difficult to not detest something that makes it so hard for my child to do the simple tasks that others take for granted, like speaking. I love everything about Nick including the quirks he displays that are associated with being autistic, but the condition itself can really, truly kiss my ass. I'm a strong supporter of Autism Speaks and other advocacy groups and would do anything I could to help them promote Autism awareness and get the word out about how common it is. I think that the more people know about it the more they'll be accepting for the behaviors and difficulties of the differently abled people that live among them. That's my hope at least.

But, in the meantime I don't hesitate to tell anyone off if they cross the line with any kind of negativity towards my son. I had an experience last year in the grocery store with a horrible old woman who insulted my child and made me wish to slap the ever lovin' crap outta her. She displayed a level of ignorance and intolerance that nobody should have to deal with. The fact that she demonstrated what a close minded person she is towards my son made me sick, but I have a feeling others have experienced it too and that's very sad to me. I am very protective of Nick and feel like since he doesn't have the vocal ability to defend or express himself that I have to use my big mouth to get the job done. He wasn't bothered in the slightest by what that woman said to him or the stares and snickers we've received out in public but I was and just can't sit back and let people do that. I'm not the boldest person in the world by any means, but mess with my son and you'll unleash an in-your-face loudmouth little fireball who will tell you exactly how I feel.

I am hoping by starting this new blog that I can try to move past the things I wrote about in my previous one. Some things are harder to move on from like the loss of a parent. I still miss my mom everyday and really feel her loss during the times when Nick does something that I know would make her proud enough to burst or when I am having a super challenging day where a mom's guidance is what would hit the spot. Moving beyond that and dealing with the finality of her passing is hard but necessary to keep going.

Her 60th birthday would've been last month and I wrote this about her:

She was a born fighter. Born three months premature and only weighing some three pounds at birth, she came into the world already showing the spunky, determined spirit that would define her personality for the rest of her life. She fought for her life with that determination until her body just couldn’t take anymore and began to shut down. Even with her internal organs beginning to fail she lasted five days and let those around her know she was ready and wanting both her struggle and her journey here to end. Hearing her say that was very hard to those who loved her, but it was something that everyone understood as she had fought so long and so hard and just wanted to be at peace and not have to deal with the pain anymore.

She wasn’t a person that anyone who knew her would have ever expected to pass away in that manner. Small in stature but not in spirit, she was a force to be reckoned with her whole life. She endured the loss of both parents before her late twenties and raised two children on her own back in the days when child support was considered an option and not the mandated thing it has become. Doing both of those things wasn’t easy and could’ve crushed the spirit of someone who didn’t possess the strong will that she had, but she persevered and made it through.

She worked hard for everything that she had and never came upon the finer things in life that she so deserved. None of that mattered to her as she wasn’t a person for whom material things really mattered at all. She saw beauty in the simpler things and appreciated kind gestures more than store bought gifts. She had a wide circle of friends and many of them were people she had known for years and years. If she loved you she accepted who you were and would back you to the wall if needed. If she didn’t love or even like a person she wasn’t shy about letting that be known. Bullshit and all forms of pretense did not have a place in her world, and she had no hesitation about enforcing that as a rule. Tough as nails on the outside, she was a softie when it came to those who mattered most to her. At the top of that list was her grandson. To say she was anxious to become a grandparent is an understatement. She excelled in that role and built a very special bond with her grandson. Having him in her life made the last six years her best ever. Her grandson was diagnosed with Autism a few months shy of his third birthday and her faith in him never wavered. She knew he was special before the diagnosis confirmed it and she treated him the same as if he was typically developed.

This person that I am writing about is my mom and my son’s nana. Had she lived she would’ve turned 60 today. She deserved to live a long life but died a month before she would have turned 56. She and I were barely 17 years apart and I always assumed we’d grow old together as we had grown up that way. We didn’t always have the best relationship, but connected as two grown women around the time I turned 30. Our bond was strengthened during my pregnancy with her beloved boy and really flourished as he grew. Like many women, I felt like I understood my mom much better after I became one myself and I most definitely appreciated her more.

It’s been a little more than four years since she passed and there isn’t a day that goes by that I don’t think of her, wish she was still with us, and just genuinely miss her. I wouldn’t want her back as she was prior to her death. She was miserable and deserved the reprieve from the pain that death provided. I’d love back the way she was pre cancer. She was strong, vibrant, and always full of life. That’s how I chose to remember her when I think of her. Her last days were only memorable in the sense that I drank in the sight of her in because I knew she would be gone soon. I spent many hours with her that last week when the end was eminent and I wouldn’t trade any of that for the world. I wasn’t there when she passed and I know now that that was what she wanted, and that it didn’t just play out that way because it happened when I went home to spend some time with my son.

The hardest part of losing her was that I felt like both she and my child were really being cheated of so many good years together. I was too to some extent, but I had many more years with her than he did. Like my son, I was six when I lost the grandparent who played the biggest role in my life. I have very fond memories of my paternal grandpa and still think of him often. I hope that Nick grows up with as many special memories of his Nana. I still talk about her often to him. She was very big on hugging and kissing him so often when I am doing that I tell him that this last kiss or hug is from your Na, as he called her. She worried that he’d forget about her but that will not happen on my watch, I guarantee that.

A couple months before she died she told me how she had watched one of the telethons benefiting children with cancer and called in to donate to the cause. She said that, to her, the children battling that horrid disease were the true heroes and the ones she felt the most sympathy for. She was being cut down in her prime by that, but the children who died from it didn’t even get the chance to live yet. I have thought about that since she told me and think it’s a true testament to her character that saw it from that vantage point. She could’ve wallowed in self pity at her lot but she didn’t. She didn’t have it in her to do that and never did. I think about that when I am having a crappy or extra challenging day and tell myself to snap out of it. If she never went down that road and she rightfully so could have, then I very well should not just because things aren’t going my way.

So, to the birthday girl I say this – you’re very much loved, you are missed beyond measure, and tonight Nick and I will blow out a candle from the birthday cake I made in your honor. I wish you were here to enjoy a slice too.

I posted this here because I am proud of the way it came out and writing that is what made me think to start blogging again and opening myself up to share my life and child with anyone willing to read it and get to know us better. So, thank you for reading and I plan to write as much as possible, even if it's just to gripe about having a crappy day or brag on something cute that my kid just did. Crappy days happen often, but I have a child who provides me with enough entertainment to make for some funny posts and keep me smiling in spite of it all.