Friday, July 12, 2013

Protecting your child from themselves.

As a parent one of the strongest instincts is to protect your child.  You teach them not to touch hot surfaces, look both ways before crossing a street, not to talk to strangers and all the other things that every parent tries to drill into the brains of their children.

As an autism parent you do the same things, but often it can seem that the biggest source of danger that you have to protect your child from is themselves.  Some kids with autism don't have an ounce of fear about them and they have impulse control issues which seem take over all rational thoughts.  That is not a good combo.  This is the stuff that makes for sleepless nights even when your child is allowing you to rest.

The past few months have shown just how dangerous it is when an autistic child wanders off from their family.  Just this past week two more boys with autism lost their lives.  That is sobering and really, really scary.

My son has struggled with what I see as impulse control issues off and on for a long time.  When he's being good and able to think it through before he reacts he is an awesome kid.  He might not want to listen to what he's being told to do or not to do but he does.  Then something will trigger inside and he'll start behaving well.. like a little butthead who won't listen. When he's in this phase of not being able to be in full control of his actions he'll show aggression at school and attempt to run off when we're out in public.  He did that quite a lot when he was three and four years old and it got to the point where I bought a harness and leashed my kid to keep him safe.  He's now almost 11, close to 5' tall and weighs close to 100 lbs.  Try leashing him now or stopping him when he breaks free of the death grip you have on his hand and runs off.  It's nearly impossible when he gets it in his head to bolt and run off.

So far he's pretty much limited it to when we're arriving home after being out.  Up until recently he could unlock the door in the backseat where he sits when the car was shut off.  We had an incident with him running off and crossing our residential street and going into our neighbor's garage so my husband fixed it and he can only get out when the door is opened on the outside for him.  He's not liking that at all and stares daggers at me when he tries to open it and can't each time that happens.  I've explained to him that he can stare at me like that all he wants and be pissed off.. mama is trying to keep him safe and that's way more important.

The scariest incident happened on the Fourth of July where my crafty little booger of a son created a diversion by opening up our front door and allowing our two boy dogs to escape.  Naturally I ran after them and was freaked out because I know that's the worst possible day for an animal to get loose.  My husband went to corral our little girl dog and Nick ran out the front door.  He ran across the street, completely oblivious to the oncoming car who was very aware of the kid who darted out in front of him - thank God.  Once we got him inside both his daddy and I sat down and explained to him how he just cannot do that.  My husband was far calmer than I was.  I was a blubbering mess and couldn't stop shaking for hours. Total and full-blown panic attack.   My baby was safe but what if that car had not seen him?  I truly believe his guardian angel was looking out for her boy that night. 

I'm at a loss as to what to do about this.  Do I just keep being as diligent as possible and wait until this phase passes? Do I medicate him to try to keep his impulse control issues manageable?  I posed this question on a couple different autism boards that I frequent and many, many parents are struggling with this very same issue. Some have resorted to meds for their kids and in a few cases it has helped. 

This is, by far, the scariest and hardest part of special needs parenting for me.  There's only so much one can do to protect someone from themselves. It's especially hard if that person is your child and you're on constant alert worrying that reason and logic won't play into their decisions.  I am on that kid like white on rice and am always aware of what he's doing and where he is.  Is that enough?  I hope and pray it is.

Friday, June 21, 2013

IEP meeting

IEP meetings aren't fun... let's just state the obvious here and move on from there.  They're a very necessary part of being a special needs parent and I accept that.  I wouldn't miss one for anything but that being said I can honestly say that I dread them each year and would pretty much rather have a root canal than go to one. 

This year's meeting was a fairly positive one as those things can go.  Nick made some great progress both academically and with respect to his behavior over the school year.  His independence in academic tasks was where the biggest growth was found.  He still struggles with what seems like impulse control issues that can affect his behavior and cooperation level, but his level of aggressive behaviors is way down and he's been able to express himself in a more positive manner when he becomes frustrated with either the teaching staff or other students.  Of the five goals set for him he met three of them.  Vocalizations are up, he's writing more independently and he's following through on tasks without needing visual prompts for help with every completed project.  The two goals he did not meet involved tasks where frustration and boredom took over and he'd lose his focus and try to get through the exercises with little or no effort.  Three out of five -- I'll take that!

It was decided at this meeting that Nick might be better suited for a different class to finish out elementary school next year.  The school district that he's in is restructuring their autism program and there are some classes being formed that would more specifically cater to both his strengths and areas where he needs more work.  The lady who's the head of the district's special ed program met with Nick's teacher a week or so before our meeting and mentioned to her that Nick might be a candidate for one of the newer type classroom settings.  Nick's teacher and I have spoken throughout the school year about how he has shown signs that he's not being challenged enough in his present class.  The hope is that this will be a better setting that will present him with more challenges and push him out of his comfort zone a little bit.  Every teacher he's had has mentioned that Nick is capable of so much more than he lets on or has been willing to do.  The hope is that this new environment will push him to show his true capabilities. 

Here comes the hard part - having Nick leave a school that he's used to, a teacher that he's fond of and classmates that he's known for the past couple of years, some longer.  He does pretty well with change so I am sure he'll acclimate to his new surroundings pretty quickly once school begins again, but it's still going to be a big adjustment.  For me it's always hard when he leaves a teacher who understands and cares for him and has made a big difference in his life and he's definitely found that in Mrs. Howard.  I get attached to the people who work well with my son and I'm anxious about someone else taking over that task in the fall.  He's been pretty lucky in the past with some great teachers so I'm hoping that will happen again.  I do expect to be very sad at his end of the school year gathering on Thursday as one door closes and we wait to see what's on the other side.  I have a great deal of faith in my son and know he'll flourish in the right environment.  I am so hoping we made the right decision and this will be where he starts to make real progress and shine.

I'd be neglectful if I didn't mention that this IEP meeting was the first one that his daddy participated in.  This was also the first meeting that Nick was present for.  I think it did him good to see his daddy involved and I know I appreciated the support there as well.  Kudos to him for stepping up and doing this for our boy and for me as well.   This was by far the easiest meeting I've been to and I have a few under my belt.  His presence did make the difference and it showed Nick that Mama and Daddy were united in our support and both have high hopes for his future progress and share a devotion to that goal.  Thanks again, Daddy O.

Monday, May 20, 2013

There but for the grace of God go my child..

This past week saw the drowning deaths of three beautiful children who had wandered away from their families.  All three were autistic and non-verbal and were able to sneak away without their families noticing.  They were all horrible tragedies and sadly the parenting skills of each of the families are being questioned in the wake of them. 

What happened in each circumstance was NOT bad parenting of any sort.  Nearly half of children with autism elope or wander away from home, school and public places.  It's horrible and tragic when it happens but it's not always avoidable as much as people believe.  Children move quickly and even the most diligent parent who is on the ball isn't always able to notice when they're not where they were two seconds before.

Imagine that being your lifestyle 24/7 where you're on constant alert worrying that your child will bolt away from you.  That's not a ideal situation but most autism parents adopt a roll with it attitude about life because we're not really given another choice.  Our children are often fearless - I know mine is - and have no or very little concept of danger.  Water is a huge attraction for most of our kids and while we're aware of the dangers that can happen to them if they went into it unsupervised, they are not.

When people on the outskirts of autism parenting, i.e. parents of typical kids, hear of things like this happening I think it's easy to wonder if the parents who lose their children in this way somehow dropped the ball or let it happen in some way.  People are especially quick to pass judgment about situations that they don't know much about or think that they would've handled differently if they were in the same situation.  I don't know why we as parents do that to each other but we do and it's a sad fact.  I've even heard some autism parents making judgmental comments about how the parents of these lost children should've been more alert and that somehow could've prevented these tragedies from happening.  That bothers me even more than when parents of typically developed kids say those things.  They're not true, not fair and do nothing in the way of offering up what those parents need the most right now - our support and prayers. 

My son has wandered off on two separate occasions and each time we didn't know of his whereabouts for about ten minutes.  Without exaggeration I can say that those were the longest ten minutes of my life each time it happened.  In both instances we were out - once was at a Chuck E. Cheese and the other time we were on a school field trip to a pumpkin patch - and each time I got distracted for a second and he was gone.   Both situations freaked me out and once I could breathe again after my child was found I was unbelievably relieved and thankful he was okay. 

I was one of the lucky ones and I've never lost sight of that.  I truly wish that the parents of Mikaela, Owen and 2 year-old Drew Howell whose story didn't make the national media were among the lucky ones as well. 

RIP sweet babies.

Saturday, May 11, 2013

Mother's Day

Mother's Day - a holiday I dread every year.

I know that as a mom I should enjoy that day but I don't.  I especially hate the week or so leading up to the holiday where all you see on television or in print are ads that have to do with finding the perfect gift for mom for her special day. 

I love that I have a sweet child who makes me wonderful things every year for that holiday.  His gifts make me happy and I've loved each one he's made for me at school.  I'm not a materialistic person so nothing else is really needed beyond appreciation for what I do as a mom.  That's plenty for me.  What makes the holiday hard for me is that my own mom is no longer here to celebrate that day.  For me Mother's Day was always about her, not myself. 

My first Mother's Day without her was in 2009 on the six month anniversary of her passing.  The pain was still very raw then and that was the hardest one yet.  Since then every holiday or special occasion has been a lesson in adjustment for myself and those who love and miss her as well.  I honestly miss going out and buying her a gift and a card to honor her on her day so it just didn't feel right when the time rolled around where I would be doing that and she was no longer here to receive them. 

I'm not sure why but this year has really been harder for me.  One reason could be that I've learned, thanks to my panic attacks that started back in February, that I really hadn't dealt with my grief over losing her fully.  I had swept much of my sadness under the proverbial rug in my attempt to focus on my child and how her passing was affecting him. With the panic attacks came a renewed feeling of sadness and I've experienced emotions regarding her passing that I really hadn't before.  That could explain my depression lately and the crying jags that seem to come from out of nowhere. 

I'm not the first person to lose a mom who was invaluable to them nor will I be the last.  We're taught that death is one of the two inevitable parts of life and that we should show love and appreciation for our loved ones all the time because you never know what tomorrow brings.  All of that is true  What I feel so much gratitude for is the fact that my mom and I were in the best place possible in terms of our relationship when she passed.  Considering that we didn't always have a great rapport together I find that to be a tremendous blessing.  I knew how much I meant to her and she knew the same.

She wrote me a letter before she died that I found shortly afterwards and it's truly one of my most treasured possessions.  When I am feeling especially lonely for her I will take it out and read it.  It's full of love and   the letter was directed not only to me but to my husband and son.  She apologized for having to go and let my son know all the fighting she did to stay alive was to see him grow up and live up to his full potential.  My husband had lost his father less than two years before so she told him how badly she felt that he was going to be experiencing another loss so soon.

I started this post to talk about Mother's Day and ended up veering off a bit to talk about how much I miss my own mom.  I feel like a lost little girl when I open up about that.  I don't feel shame in feeling that way either.  Deep inside all of us is a part of the child we once were and the most important person in most children's lives is their mom.  I don't think it matters at what age that that inner child in all of us loses their mom; it's a profound event that changes us and we feel lost when it happens.  I can't speak for everyone, of course, but that is definitely been the case with me.

To anyone out there reading this I thank you for reading my long and rambling post here.  I look forward to the day where I feel less pain when this holiday comes around.  I wish all mothers the happiest of days tomorrow and hope that you're surrounded by love and shown the appreciation you all deserve. 

Tuesday, April 30, 2013

Puberty?! Nooooooooooooooooooooo.

Merriam-Webster defines puberty as:  the condition of being or the period of becoming first capable of reproducing sexually marked by maturing of the genital organs, development of secondary sex characteristics, and in the human and in higher primates by the first occurrence of menstruation in the female.

My own personal definition:  Hell.  A hell that I am just not ready for.  At least not yet.

My son will be 11 in August so I didn't expect this to be starting now.  I know he's at the age where this stuff just naturally happens to some boys, but it's hard to imagine it happening to my child.  There are so many ways that he seems so much younger to me but he's not.   Autism has stunted his emotional growth but not his physical one.  He is a large boy, already wearing some men's size clothing and looks like he could be a teenager but he's not.
Puberty is scary and confusing and sad and just damn overwhelming.  And I'm just talking about the ways that it makes me feel.

I'm guessing that puberty for a mostly non-verbal boy is a whole hell of a lot more confusing than how it would be for someone who can verbalize the questions he's bound to have. Since he can't ask I've been talking to him about some of the things that I know he's going to be going through.

As of now the signs that this is definitely on the way are more emotional than physical.  His moods fluctuate worse than mine at the height of PMS.  He's become very interested in being alone at times and will retreat to his room just to hang out and watch TV by himself.  He has shown a heightened interest in girls of all ages.  He's always loved the ladies but I've noticed him staring at them while we're out in public and picking random women to smile and sometimes flirt with.

When the signs of puberty become more physical and out of the scope of what I know much about, I will let his dad step in and do his best to explain all of those things.  I don't think I'd be able to to talk to him about that kind of stuff without as much knowledge as his dad has.  Talking about wet dreams and uncontrollable erections that are to come?  Um.. no.  I'd rather not.  Just writing about them now made me tummy lurch a bit.

I'm probably coming across as naive in thinking that this just can't be happening to my boy yet and maybe I am, but it still just seems so soon.  I know and accept he's not a baby despite the fact that he is MY baby.  It doesn't matter if I am not ready for this; he probably isn't either.  At least not yet.

Thursday, April 4, 2013

Short and sweet Nick story.

My child and his level of intelligence and empathy are things about him that often impress me, but the story I am about to share took me aback and made me really appreciate those qualities he has.

Some back story here first:  My son was very close to my mom and he spent a great deal of time at her house from the time he was born until she passed when he was 6.  She had made me promise not to bring him around her when she was really sick and out of it due to being overly medicated and I didn't.  The last time he went with me to her house was the week before she passed and she was having a relatively good day.  We didn't stay long and he hasn't been back to where she lived since then.

Nick is obsessed with Google Earth and has been using it to navigate all over our immediate area.  He likes to show me where the restaurants and grocery stores he likes to go to are and will continuously point them out to me until I take him to those places.   He can make his way through that app much better than I can and often finds places that I've never been to. 

Today he was using it on my phone and I noticed he was on the street that is close to where my mom lived but I didn't really think much about it.  I did wonder how he knew how to get there from where we live because it's not a straight shot at all.  Next thing I know his Daddy is standing behind him looking at where he ended up with a surprised look on his face.  He had found his way to her house and what was on the screen was a Google Earth shot of the gate in front of the complex where my mom lived.

It's been over four years since she passed and the last time he went over there and yet he found it going by memory and looking at landmarks along the way as a guide to how to get there.  I teared up when I saw the picture on his phone and told him I was so impressed he found it.  I asked him who used to live there and he said, "Na", his word for my mom. More tears.  He saw my reaction and reached out and gave me a rub on my cheek and blew me a kiss.  He has a memory like an elephant so perhaps I shouldn't have been all too surprised but I was.

I still have goosebumps thinking of it.  My brilliant boy.

Thursday, March 28, 2013

I spoke too soon

Yep, those panic attacks I spoke of are back.  It had been over two weeks since my last one and I thought that I was done having them.  I even mentioned to a few people that I thought I was in the clear because they appeared to just stop as suddenly as they started.  Wrong.

I am still really on the fence about taking anything pharmaceutical for it.  I asked a group of autism moms how they handled their stresses and mentioned my panic attacks and the most common recommendations were either Klonopin or Xanax.  I did a great deal of reading on both of those and the side effects listed made me nervous just reading them.  I also checked into more natural methods of battling those attacks and think that going that route might be the least scary path for me to take.

I'm not one of those all-natural, crunchy or even semi-crunchy moms at all.  The minute I get a headache or any kind of body ache I am literally sprinting for the bottle of Aleve.  I don't look for all-natural methods to get rid of things like that; I rely on what I know to work and makes the pain go away in the quickest manner possible.  I insisted on drugs the only time I gave birth and the thought of doing that without them gives me the cold chills almost 11 years later.  Nooo way.  Uh-uh.

I understand why they started happening, or at least I think I do, now I just really want to make them stop.  Each time I get one I feel a bit hungover for a couple hours.  At least with a hangover you generally have memories - albeit cloudy ones - of a good time that was had.  There's nothing fun about these. 

I'm overwhelmed most of the time but what parent isn't?  I've been that way for years but having these panic attacks makes everything seem that much more strenuous to me.  The fact that these began right about the time that my son was about to start a month-long break from school also well.. sucks.  When he's in school I have a small amount of time each day to myself and try to take necessary breaks to keep me going.  I love my job as his mom and wouldn't trade it for anything, but like any full-time job time off is needed.  I'm hoping that when he goes back in less than two weeks and I have that time again that these will stop and I'll feel more like myself.  If they do continue and I am still feeling the need for help maybe a return to therapy might be in order.  Whatever I have to do I will do it because these aren't fun and these just need to go away. 

Wednesday, March 20, 2013

Anxious about anxiety

I'm an anxious sort of person and I always have been.  I tend to worry about things both in my control and out of it.  Worrying doesn't get me anywhere, I know, but it's part of who I am.  I've never really thought too much about it being detrimental to my well being because I've always done that and I figured if I was going to feel any side effects of it I would've already.  I've never developed an ulcer or suffered any other physical type of consequences because of my tendency to worry.  I can remember a few instances where I worried so much that I shook on occasion.  I did that quite a bit when my mom was really sick and about to pass away.  I felt helpless and when I couldn't banish the thoughts of what was happening to her from my brain I'd shake a little bit, have a good cleansing cry and feel better for a while.

I had never had what I now know to be a full on anxiety or panic attack though.  I didn't experience my first one until about a month ago and it scared the hell out of me.  I was on the way to the memorial of my friend Amber's mother.   My friend Karen was driving - thank God I might add - and out of nowhere I started to shake all over.  I felt very cold and my teeth began to chatter.  I suddenly felt really thirsty too.  My friend that was driving became worried about me when she turned the heat on me and I was still shaking and saying how cold I was.  She correctly guessed that I was having a panic attack and asked me if I had ever had one before.  Since I had never experienced one I wasn't sure.  All I knew is that my heart was pounding and I felt like I was coming unglued for a few minutes.  She pulled over and I ran into a convenience store for a bottle of water to help relieve my cotton mouth.  I was shaking as I paid the cashier and he was looking at me funny and I don't blame him.  I was a sight to see.. shaking all over and almost unable to pull the cash out of my wallet to pay for my bottle of water.  As soon as I got back into her car and started drinking the water I began to feel better.  My legs felt wobbly as I walked into the church but as soon as I sat down I felt a bit more like myself. 

When I got home I googled my symptoms and read up on panic attacks. I learned the difference between what is an anxiety attack is and how it's different from a panic one.  Panic attacks pretty much feel as if they're coming out of nowhere and present themselves exactly like mine did.  I began to think about why I had one that seemed so out of the blue and sudden while it was happening.  Turns out it was something I think was brewing for a while and just presented itself that way and that day.  It was the first memorial I had been to for someone's mom since I lost my own and I think that something about going to that triggered something inside of me that I had buried for the sake of functioning - my own grief.  I've known my friend who lost her mom for well more than a decade.  She's twelve years younger than I am and for some reason I've always felt very maternal towards her.  I didn't know her mom very well but I took it hard when I found out that she passed because I care deeply for my friend and know what she was going through.  I related to her pain and how she felt like a lost little girl who only wanted her mommy again.  I went through that and still to this day have those feelings.  I push them aside because I have a job to do and need to focus on my child but in my quieter and more reflective moments those feelings are there even though my mom has been gone for over four years.

I think just the act of going to her mom's memorial triggered my deep-seated sadness and instead of crying like I would normally do brought on a full panic attack.  I thought that once that day ended that would be the last of those but I was wrong.  It's almost as if the floodgates opened.  I've had four of those since then.  One happened in the middle of the night and woke me up.  I have no memory of what I might have been dreaming of that brought that particular one on but all I know is that I woke up with the same symptoms as before and it took me getting up and drinking a bottle of water and going outside for some fresh air to calm down again.

I'm torn at this point as to what to do.  I am hoping that this is something that will pass.  It's been over a week since my last one.  I am not ruling out the possibility of resorting to taking medication if this were to keep happening but I'd rather wait and see at this point.  I've never been on any form of anxiety medication or anti-depressants.  Nothing against them for other people at all but I've always worried about how they'd affect me.  I'm very, very sensitive to medication and always have been.  I was prescribed Vicodin last summer for a pinched sciatic nerve and it messed me up big time.  I was barely able to function and lost a good amount of weight.  I couldn't sleep and just felt very out of it until that stuff was out of my system.  Suffice it to say meds and I don't mix well.  I know people who've been greatly helped by meds so if I get to the point that the panic attacks are commonplace and they interfere with my ability to do what needs to be done I will do it.  I'm just hoping I don't have to.

Since I worry that just me being anxious about these attacks will bring on one I am trying to not focus too much on them.  That's partially why I wrote about it.  If I sit down and get my feelings out about something I tend to feel better and can handle whatever that is bothering me in a calmer manner.  Here's to hoping that happens with this.

Thursday, March 7, 2013

The school issues we were having earlier this week were resolved by extending his month long break by a couple of extra days. He was supposed to be off for a month as of today at noon but instead I chose to keep him home on Wednesday and for the few hours that he would've been there today.   I hated having to do that but after thinking about it for a long time the other night I decided it would be the best way to go.

I resisted doing that because it felt like I was giving him exactly what he wanted - to be home and away from the confines and demands of school.  I was honestly just worried that there would be a repeat of his behavior earlier in the week.  He knew his behavior was enough to warrant an early pick up from me and I thought that he'd do the same to get out of there if he went back so soon after that.. His teacher e-mailed me thanking me for making that decision and saying that she had the same feelings about what might have happened if he came back for the remaining two days before they tracked off.

Her support meant a lot to me because I had been second guessing that decision all the way up until his bus came for him Wednesday morning and I went out to tell the driver that he was staying home.  I worried about what kind of message I was sending to him.  He is a super smart kid and remembers what works with people, especially with me.  He has a memory like an elephant and seems to file things away for future use.

A big part of my reasoning in extending his break was that I was hoping that he'd have a good amount of time as a buffer zone between his awful behavior and being sent home and when it's time to go back to school the week after Easter.  I'm not expecting him to forget what worked but hoping that that much time away and his love of routine will compel him to behave better when he does go back.  His teacher agreed with me on that as well.  In terms of bad behavior things tend to get worse before they get better with him and after how bad it was this week at school I didn't want to take any chances and risk having it get even worse.

On a purely selfish note I was sad to not have much time to myself this week before his break began. I am grateful for any and all downtime and had been looking forward to savoring the little I was going to get this week. But if I had sent him back just so I could have that much needed break what kind of mom would that have made me?  A pretty selfish beotch of one in my eyes, that's for sure.   Needing some me time doesn't make me selfish but doing it at the expense of others does.  I'm not big on judging other parents.  I generally have a way of thinking that believes that people have to do whatever works for them and since I am not in their situation who the hell am I to sit in judgment.  But this is different entirely.  This scenario is mine and I would've mentally kicked my own ass for putting my needs above others.  Totally not worth it.

Did I make the right decision?  I hope so.  If anyone would like to comment and tell me what they would've done or lend me some perspective I'd love to hear.  I'll make sure I am wearing my big girl panties too.

Tuesday, March 5, 2013

Deep breaths.. in and out

This is going to be a major vent post.  Not a woe-is-me one, but definitely one where I spill how I am feeling and hopefully just writing this out will calm me the eff down.  I need it.

I just had to go pick my son up at school for being aggressive and hitting classmates and the teaching staff.  He did that yesterday as well and I was all set to go get him but his behavior turned around and he reverted back to his usual self.  Today was different.  Both yesterday and today there was a substitute teacher in his class because his teacher was out sick.  She's awesome and has a way of calming him down and redirecting him that nobody else in his classroom has.  Whenever she is gone he tends to act out more.  Part of me wonders if it's because he thinks the sub will let him get away with it.. I really am not sure, but it happens nearly every single time his teacher is out.

I understand that aggression among people who are autistic is very common.  If non verbal they often show their frustration with not being able to communicate by lashing out.  Sometimes it's an attention seeking behavior or a way to avoid having to do something they don't want to do.  I get that but that being said I don't excuse it or think Nick or anyone else should be able to do that and get off scot-free.  When he does that he loses the things that make him happy like watching his beloved Spongebob and playing with his iPad or my iPhone.  I made it clear to him when I picked him up that this wasn't a reward type situation.. he's not going to have the things today that make him happy and shouldn't be as happy to see me as he was. 

Being a hardass and taking what he loves the most away is hard, damn hard, but I feel like I have to show him that what he's doing is wrong and not acceptable in any way. I believe he knows better than that and can control those impulses but just chooses not to for whatever reason.  One of the aides in his classroom who was there today reminded me how she told me a while back that she wished that their whole class was made up of kids like Nick.  She said that he is generally the sweetest, most engaging kid and she loves having him in her class.  To have him behave badly and the total opposite of that is so upsetting.

I love nothing more than when he's behaving like the sweet boy I and just about everyone else knows him to be.  The Nick I know is a sweet cuddle bug who gives me more love in one day than some parents get in a week with their kids.  To have him behave badly and seek people out to hurt is something that upsets me and makes me feel like crap in every possible way.

He is about to start a month long break from school as of this Thursday.  I am not sure if I should send him back to school tomorrow and for the part day on Thursday or keep him home with me.  Home with me is clearly where he wanted to be today and yesterday but I don't want reward his bad behavior by giving him what he wants nor do I want to send him and have him behave like he has both yesterday and today.  His teacher has the flu so there is no telling whether she'll be coming back before the break.  That sweet aide I spoke to took my cell number and said she'd call or text me today if she finds out whether the teacher is coming back or not.  As much as I was looking forward to having a day and a half to myself before his long break starts I won't send him if I think he is just going to do what he's done lately.  Especially since I went today to pick him up.  He got what he wanted by behaving badly.  What kind of message is that sending to him?

As much as I live for and love my son and think being his mom is the greatest gift I have ever been given this whole parenting gig is sometimes just very, very hard. 

Monday, March 4, 2013

Now and then

As much as I try to just focus on the now I do worry about Nick's future as an autistic adult.  As he gets older that concern does intensify.  When he was diagnosed at almost three I had high hopes that he'd make so much progress that his disability wouldn't hinder all that I knew he could become.  I still have hopes but they aren't as high as they used to be. That's hard for me to admit or really talk about.  In part that's because I worry that it makes me sound like a bad mom to others or at least as someone who has lost some faith in their child.  How it seems to others is secondary -what's more important is that it bothers me that I do that.  I wrestle with that within myself.  I get angry when I allow myself to dwell on those worries instead of keeping faith and living in the now.  I don't struggle with faith in my son's abilities at all; I struggle with letting my concerns get the better of me.  That's my nature but it doesn't help me as a mom and especially as my son's advocate if I let that consume me.  I try taking deep breaths when I feel that coming and remind myself to think positively. 

Faith is something that means a lot to me.. if I believe in something or someone I believe in it wholeheartedly and none of that has ever faded even as he hasn't made as much progress as I had hoped for. There are a few blogs that I have been reading lately about adults on the spectrum and while some help me keep my faith that things will greatly improve for Nick, there are others that cause me concern because they echo my fears of what could be.  At this point I am pretty sure that Nick will always be in my care in some way or another.  That doesn't bother me.  When I chose to have him I never believed that parenting was something that ended when the child turned 18 and was in college or on their own.  What concerns me is that nobody is immortal and there will come a time when he will have to care for himself and be productive on his own.  Yes, I am referring to what happens when I am gone.  I am sure all parents worry about that but anyone with a special needs child probably tends to dwell on that a bit more.  Most parents envision college for their children followed by a career that will provide them and their future family with a good lifestyle and the ability to have all the trappings of a "normal" life. 

I've had people ask me what I want for Nick as an adult and that's not an easy question to answer.  I want him to be happy, self-sufficient, loved for who he is and accepted for who he isn't.  I want him to be able to express himself to others in whatever way he's capable of and have his needs understood and met. Nick will most likely never be considered to be normal by society's viewpoint but that doesn't bother me.  I am sure by the time Nick is an adult he most likely won't be in such a small minority among other adults.  With Autism rates rising as much as they are I am convinced by the time he's an adult he'll be among the many who are in the same boat as he is.

Normal isn't a word that applies in a household with an autistic child. Our lives are anything but.  In fact, I pretty much despise that word.  To me it sounds judgmental in of itself.  I prefer to use the word typical.  Typical doesn't have as negative of a connotation as the word normal.    Normal, to me, suggests that if someone isn't a certain way they aren't right.  That kind of thinking just flies in the face of logic and just basic respect for the differences between everyone. 

Tonight on MTV a show called "World of Jenks" will have its season two premiere.  This show is a reality documentary series that features a guy who moves in with a person for a week to get a feel for life from their perspective.  Tonight he'll chronicle his experience living with a 20 year-old man with Autism.  I have seen a few clips from this show and it looks like it will be an interesting show to watch. 

I'm sure watching what little I've seen of this show and reading about autistic adults has stirred up my concerns to a point that they are higher than they generally are.  When this heightened level of concern passes - and it always does - I'll better be able to focus on the now.  It's the now that will shape what happens then.  I suppose that needs to be my mantra and what I need to tell myself to calm down when my anxieties threaten to take over.  That and deep breaths and/or a stiff drink.

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.