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.