Working through guilt

My last post “When a parent feels guilt” brought a lot of response from friends – both real life friends and cyber friends.

When I wrote that blog I had no idea so many others would identify with what I was feeling and would offer encouragement to me. I posted the link to the blog on my Facebook page and several friends read it and commented on my page there. A few came here to comment, and one even sent me a private message through Facebook.

What I realize is how very blessed I am. Not only do I have a wonderful husband and three amazing kids, but I have friends who are willing to take the time to care.

While being a special needs parent has its ups and downs and in truth – my son’s needs may not seem to special to many others – but they affect our lives and orchestrate much of what we do and how we do it. Even if my son did not have special needs, I realize that I would feel guilt over him – over all of my kids. Isn’t that part of being a parent? We feel responsible for what our children do – the choices they make?

I’m sure the guilt will never completely go away – but to know that others have dealt with the same issues themselves makes me feel less alone. To know that I have friends who understand the pain I sometimes feel and are willing to offer cyber hugs – I can’t even describe how that feels.

I think I already said it best – I feel so blessed.

When a parent feels guilt

I’m sure that most parents of kids with special needs can identify with this – that feeling of guilty, or responsibility for the problems your child has.

I am no different. I have tendencies that are somewhat obsessive and compulsive but I wouldn’t exactly say I’m OCD. I do have attention deficit issues of my own.

What I see in K-Oz, though, riddles me with a guilt that I try to push away and tamp down into the dark recesses of my own thoughts. It is as though he has taken those mild OCD tendencies I have, and the attention decificit issues I deal with and ramped them up to warp speed. He has multiplied them into the beasts that plague him constantly.

I feel guilty. I see some of my own characteristics – magnified – in him and realize that it is probably my gene pool that has brought these things to him.

When K-Oz first started exhibiting his TS symptoms, I did research about it and discovered that stuttering is a form of TS – a cousin of sorts. My father and brother both stutter – so the realization hit me that what was happening to my child probably came from me.

As I watched him, I saw my own eccentricities visited upon him. I have a difficult time getting rid of things. My brain tells me I might need that item, so it must be saved for the possibility it might be needed. That’s why I am buried in clutter. I look at things and my brain can’t sort them or understand what must be done with them (as in put them away, pick them up, get rid of them), instead my mind goes into an endless loop of “what to do? that makes no sense, it’s easier to not do it than try to figure it out” which leaves me unable to complete that particular task.

The obsessive/compulsive side of me will roll something around in my head and work it over in my mind until I’ve exhausted it and am ready to let it go. The compulsive side will tell me that when I get an idea, I must run with it at that exact moment. Now these OCD issues are mild for me – I easily overcome them, but they exist.

For K-Oz – mild on any of these counts is not the case.

What I see in my son is this: Hoarding (“all of these things – even the pieces of trash – may be important and necessary – I can’t let them go”), distraction (“I forgot what I was supposed to be doing”), obsession and compulsion (“there is a flying bug somewhere here – I must watch for it,” and “I cannot pass the couch without rubbing my hands x number of times on the couch, shuffling my feet x number of times on the floor, rinse and repeat until my brain is satisfied and will allow me to pass”) and many other issues.

I feel guilty. I feel as though the struggles my son is dealing with – the things that plague him – are indeed, my fault.

How does a parent deal with that sense of guilt? How does the parent of a child with a severe disability – one that might even be life-threatening – deal with the knowledge or belief that they are responsible for that which hurts their child?

I wish I knew the answer, but all that I can offer is my own experience – I deal with it one day, one event, one incident at a time. That’s my only option. I can’t beat myself up – as much as I would like to. I can’t change things. I can only help my son work through all of this and try to find solutions and ways to deal with all of it.

That’s all I know to do.

OCD rears its ugly head

K-Oz has OCD comorbid with his Tourette’s. We have always thought his Tourette’s (TS) would be the biggest issue we would deal with. We didn’t realize that his OCD would have phases that would control and orchestrate our lives.

Right now, K-Oz is in a very difficult OCD phase. He is having some sort of an obsession with flying bugs. If he sees or thinks he sees a flying bug – a fly, a moth, a mosquito – he has a meltdown. He goes through a slapping spasm in which he tries to destroy every real and imagined bug. He has even taken to grabbing shoes and swinging them at the bugs, throwing shoes and screaming loudly at the bugs.

While he’s always disliked flying bugs, his aversion has been ramped up into overdrive for the past couple of weeks. So much that K-Oz almost can’t function normally when he gets into a “spasm” over the bugs. At bedtime, he has been having trouble falling asleep if he thinks there might be a moth or mosquito flitting around his bedroom.

His next appointment with the pediatric neurologist was scheduled for mid-August, but he actually asked if we could make an earlier appointment. He realizes this bug thing is affecting his life and his everyday activities. Thankfully, I have been able to move his appointment up to mid-July – a month earlier but still about three weeks away.

I am hoping things settle down soon, without the need for more medication.

Asperger’s Syndrome

A cyber friend of mine, Heather K. Adams, wrote an article about her early signs of Asperger’s Syndrome. This was written from her experience with her son, Sam. You can read her article, Asperger’s Syndrome: Early Warning Signs, here.

As I read it, it strengthened my belief that my own son, K-Oz may have undiagnosed Asperger’s. We have spoken with our pediatric neurologist about it, but she said that although she agreed with our assessment (that he does have some form of autism spectrum disorder) that going through the tests required for a diagnosis would be counterproductive. She felt they would provide more of a setback for K-Oz and would serve no purpose other than to confirm something we already believed to be true.

Reading Heather’s article reminded me why it’s nice to have friends who can understand – whether they are in real life or online. Only a parent who is living day in and day out with a special needs child can truly understand what it’s like.

Socializing my special needs kid

Of course I’ve heard plenty from other well-meaning people with concerns about socialization for my kids. One thing that people don’t think of as often, though, is socialization for special needs children.

My son, K-Oz is well-socialized for both a homeschooler and a special child. The biggest issue, though, is that in many ways he is socially awkward and is very much a loner. He often prefers to hang out by himself because he frequently feels frustration around other people. I can’t explain it. He will spend a certain amount of time around people – specifically other kids – then he’s had enough. He wants to get away from other kids and just be by himself. I believe K-Oz has an undiagnosed autism spectrum disorder, based upon some of his mannerisms, characteristics and personality traits – especially when it comes to social skills.

Sometimes that can make for a little loneliness here and there.

So I’m thinking about ideas to help special needs kids socialize. For K-Oz, the physical presence of other people can sometimes be too much. Maybe they’re invading his personal space, or they’re dominating the conversation, or they are moving around a great deal or very quickly. Sometimes these things overwhelm him.

I came up with a cool idea that we tried out today. A friend has a son – who is K-Oz’s friend – who has a few social issues himself (his mother believes he has Oppositional Defiance Disorder and a certain level of Asperger’s Syndrome) and finds himself left out because he has a strong personality that can quickly become overwhelming for other kids.

She and I decided to let these two boys chat on Yahoo Instant Messenger. The cool thing is – it worked great! K-Oz and his friend C chatted for about 15 minutes. It helped K-Oz with his fine motor skills (typing), his verbal skills (what to say) and his social skills (waiting to see what the other person has to say). He didn’t feel overwhelmed by the physical presence of another person and was able to communicate effectively at his own pace.

I’ll be sharing more on this later, but my question is this: What effective ways have you found to help socialize your special needs child?

Dealing with stares and whispers

The other day I was sitting in Wal-Mart. I was finished with my shopping but was sitting on a bench at the end of the checkouts waiting for my mom and grandmother.

I heard some shrieking coming from my left and I turned to look. There was a couple with three children with them. One of their kids appeared to be about eight or nine and was riding on a seat in the “big kid cart” (as I call them – you know, the ones that have two seats attached to the cart and make it impossible to maneuver through the store?).

This boy appeared to have some special needs because he was shrieking and throwing his head around – different from a child having a tantrum or just being obnoxious. He continued to do this as the parents traipsed through the store to the outer doors, getting louder and more persistent in his shrieking as they went.

I noticed that everyone in the store near the commotion was pausing to watch this family. Some shook their heads, others rolled their eyes and I’m sure a few were thinking “They shouldn’t take that kid out in public where he can disrupt everybody else.”

I felt intense empathy as I looked at these parents. Their faces spoke volumes. They had that downtrodden, resigned look that said “I’m tired.”

It’s human nature to turn and look – maybe even stare – at things that are different or that stand out from the crowd. We can’t help it, but I understand how those parents felt. Sometimes you just don’t want anyone to notice you – or your child.

Sometimes you wish you could carry a sign for everyone to see that says “My child is special. Please don’t stare.” Other times you wish you could carry a sign that says “My child is special – instead of staring and whispering, why don’t you ask me about him?”

Two extremes – pretty much a common arc that I swing through – wishing people would ignore the unusual behavior, and wishing people would just ask what’s going on so I can explain.

A life not-so-normal

A normal life
I thought I wanted
less cumbersome
fewer bumps
along the way

I got instead:
a life outside the box
a child that
the mold
days of difficulty
days of sweetness
my life

No do-overs
no trade-ups
I can’t imagine

Life’s turns
and twists
can hurt
cause heartbreak
sweet joy
of a different kind
is found
in a life
not so normal

Taking a special needs child to an amusement park?

What? Am I crazy?

The issue with my son is this: He is easily overstimulated by fast, colorful movements and things that can overwhelm the senses.

Ahhhh, there’s the catch: An amusement park is exactly that – a smorgasbord of sensory overload!

Last week the family went to an amusement park slash water park that is about two hours away from us. We had the chance to go for two days and it was a nice getaway.

The thing is, we had to be very conscious of K-Oz’s issues. He is easily overwhelmed. We stayed in a hotel and our regular routine – full of familiarity – was totally disrupted. He slept in a strange bed (we all did!), ate on a strange schedule and we did things completely out of the ordinary for us.

Now we are back home and K-Oz actually did quite well. He’s been somewhat cranky and out of sorts, but that seems to be a common thing with him right now – amusement park or not.

Make a file folder for your special needs child

I found this very interesting article encouraging parents to make a special file or folder to keep their child’s information together and handy.

I have never done this, but am going to. I have thought about it before, but after reading this article, I think it motivated me to get myself in gear and actually do it.

Parenting an autistic child

Here’s a very interesting article that is worth reading about  parenting an autistic child

Several great points are made and some pretty good information.

One of the hardest things about having a child with special needs – for me at least – is switching back and forth between my two daughters who have no special needs and my son who does.

I find that I’m either too lenient with one while being too hard on the other, or I just get frustrated and make the situation worse because I don’t take a moment to stop and think before I speak.