Finding support and light at the end of the tunnel

The hardest thing I have found as the parent of a child with special needs – is the feeling of being alone – of thinking people don’t understand.
Having a child with special needs can make you feel isolated, overwhelmed and exhausted. Sometimes you get so focused on the special need that you forget to notice the child – or even your other children. I find that sometimes I pay more attention to the things K-Oz does than K-Oz himself. I find also that sometimes I feel like my other children aren’t getting the attention they need and deserve because I’m focusing so much on what K-Oz needs.
And I always feel guilty about that.
Sharing my feelings of isolation, frustration, guilt and inadequacy helps me tremendously and I hope it helps other parents who are in the same boat.
The other day I got some wonderful encouragement from my cousin Beth. After reading one of my blog posts, she sent me a message. She told me about a friend of her son’s who has ADHD. She shared about watching him grow up, seeing his obsessions and compulsions and behavior issues. Now this young man is in his 20s and Beth said he is doing exceptionally well and living a good life.
That was exactly the encouragement I needed on that day. To know that there is hope that my son will someday live his own life and won’t need me to hold his hand. I don’t know if that will actually happen – K-Oz may always need help and supervision – but it helped me to know that there are other parents who have walked before me and survived.
That is why I must take this journey one step at a time – not focusing on what is down the road a ways off, but knowing in my heart that whatever does wait for me will continue to wait. And it will be okay – no matter what.

Birthday celebrations

K-Oz just celebrated his 12th birthday this past week. Time passes so fast and as a parent, I can’t help but think back to when he was born. Since he is my oldest – he was my guinea pig. I was 24 when K-Oz was born and I read everything I could about being a new mom and having a new baby. I probably read too much – I thought a lot about the things that could go wrong during pregnancy and with a newborn.

I worked at the local health department while I was pregnant – in the maternal and child health program. I was a secretary so I received lots of reports of high risk pregnancies, adverse pregnancy outcomes and special needs children. Sometimes too much knowledge isn’t the best thing – I would have rather been oblivious to the things that could happen to my baby, but later it would come back to serve me well.

When he was born healthy – I was overjoyed. Although, I would have cherished him even if he’d been born with extreme problems. In retrospect, what scared me when I was a naive 24-year-old first-time mom, prepared me for what was to come in later years. I was already familiar with various special needs and knew when something wasn’t right with K-Oz. I was able to recognize that certain things he was doing were considered “normal development.”

As my son grows and I watch him, I can’t help but wonder what the next leg of the journey will bring. He stands on the cusp of being a teenager and eventually a man – how will his special needs affect that journey? I can only watch and wait and pray that there will be more joy than heartache in this particular journey. As a parent – that is the only option – at least the only one I am willing to choose.

A phobia?

We saw the new pediatric neurologist on Monday. She seemed nice and was easy to talk to. She didn’t seem to look down her nose at us – which is always good, and a real plus in my book.

The new doc seems to think that K-Oz’s current issues with bugs – more accurately flying bugs – is more of a new phobia, rather than an obsession or compulsion. We went to the zoo before the doctor’s appointment and while there went into a butterfly room. There were butterflies flittering everywhere – which I simply adored – but I was concerned about K-Oz. We gave him the option of not going inside, but he wanted to check it out, and he did very well. He flinched and twitched and I could tell he was on edge, but he made it through without freaking out. I was so proud of him!

Our next step is to find a psychologist to help K-Oz explore this possible fear and also his anger issues. The new doc felt the anger and impulse issues were more related to his ADHD and possibly hormones – pre-pubescent hormones, actually.

So, we’ll see what happens. For now, we’re just doing like always – one day at a time. Some days are good – some days aren’t. There are days when I feel like my own head will explode or implode or melt from frustration, aggravation, or heartbreak for my child.

Today? Today’s a good day. Today is actually K-Oz’s 12th birthday – and I am thinking about how blessed I am to have this wonderful son and his two beautiful sisters. No matter how much heartache or emotional pain my children might bring on various days – every tear and every swallowed scream are worth it. Because I love my children more than my own life.

Seeing the new doctor

Tomorrow (July 20) is when we meet the new pediatric neurologist. K-Oz told my husband tonight that he’d really like to have an answer – or at least a better understanding of the issues he is dealing with.

He was specifically referring to his freak out switch that gets tripped every time he encounters a flying bug – a fly, a moth or anything else that zips and buzzes around.

My husband said K-Oz really doesn’t want to take any new medications to control his OCD but he would like to better understand what is going on. We are hopeful that new medications won’t be necessary, but I myself am not convinced.

I’m not a big fan of medications for his issues, but in truth – some of his OCD issues really make life difficult and make it hard for him to function. He doesn’t see it that way, but as his mother – I watch his struggles and see how hard it can be for him. I also know how hard it is for those of us around him.

So, we’ll see what happens. We’re going to enjy some family fun at the zoo beforehand, but I’m hopeful that we will leave the doctor’s office with some new information that can help K-Oz.

An upcoming appointment

Next week we have an appointment scheduled to take K-Oz to the neurologist in St. Louis. We are anxious for the appointment for a number of reasons. K-Oz’s behavior seems to be getting more out of sorts and we are hoping the doctor can give us some insight.

While his OCD seems to have settled down a bit more, he is becoming more aggressive. His temper has developed a hair trigger that causes quite a stir in our house. He gets angry at one of his sisters and explodes with the intentions of grabbing them or hitting them with something.

This is so out of character for my lovable little guy (who is not so little anymore). He is normally easygoing – although he doesn’t do well with changes and unexpected surprises. He has even become argumentative with Mom and Dad. A simple direction for him to take a shower or change his clothes brings an outburst of anger that is coupled with him loudly screaming “Geez Mom! I’m going!”

I try to tell myself that part of this could be pre-puberty – he will be 12 next week – and I know how much those hormones can turn people into unrecognizable lumps of emotion. So we’ll see what the doctor has to say and hope that K-Oz settles down a bit.

While we are in St. Louis we’re going to make a trip to the St. Louis Zoo. The kids have never been there and the doctor’s appointment is at 3 p.m. – so we’ll go up early enough to spend a few hours enjoying the zoo. Here’s a great article written by a friend about the zoo. She and her family went there a few weeks ago and we’re excited to check it out ourselves (although the husband and I have been there, it’s been about 14 years since we visited).

Some days I just feel like beating my head against a wall. . .

Okay, so I know that’s not a “good mom” statement. It’s true though. Some days, I just want to crawl back in bed and hide, or beat my head against the wall in frustration.

I love my son. I love all three of my children. I adore them actually. Some days, though, dealing with the ups and downs of a child with special needs is just hard. Some days I want to just not deal with it.

Does that make me a bad mom? Sometimes I think so, but I think it also makes me human. As humans, we shrink away from what makes us uncomfortable or from what is painful – both physically and emotionally.

It’s painful to watch my son in the throws of his obsessions and compulsions. It’s difficult to try to calm him, to deal with the aftermath of one of his meltdowns. It makes me hurt for him.

Since I don’t believe in beating my kids or my pets (that makes me a GOOD mom, right?) I don’t take out my frustration in a physical way. Sometimes, though I do want to punch the wall or bang my head on the desk out of sheer frustration or a need to vent physically. I’ve found that there are better ways, but I still picture myself going “bang, bang, bang” on the wall. Not hard, mind you – I don’t want to bash my brains out or kill any brain cells – I need to keep as many as I can.

No, just a few little taps to make me feel better.

I don’t do that though, instead I bang the keyboard. I write. I release my frustrations, my fears, my aggravations, and my tears in my writing. It is my hope that I’m not alone in my feelings – that the things I write about are similar to what other parents of special needs kids feel.

The main thing, though, is that I hope that my own struggles encourage another parent and help them feel not-so-alone. Cuz we all know parenting aint for sissies – and it can be a lonely job with little appreciation.

Celebrating little victories

I read a blog post this morning written by a friend. In the blog, she ponders on the little victories she sees in her daughter – who has mild cerebral palsy.

I can certainly relate. When you have a child with special needs, every small thing is worth celebrating. While you take for granted that children without special needs will be walking, talking, dressing themselves and toilet trained by certain ages, you have different feelings about those milestones with your special needs child.

Read my friend Polly’s blog post here. She put it eloquently, and I understand completely.

What little victories do you celebrate each day with your child?

Who knew a haircut could be a big deal?

Haircuts for K-Oz have always been a “big deal.” Always. From the time he was little and began to need haircuts, it was an issue we had to deal with.

When he was very young, before I was aware of sensory issues, I didn’t understand why having his hair cut was a traumatic experience. K-Oz would scream and fight whenever we tried to cut his hair. This happened every time. I became adept at giving haircuts to a sleeping child – it was the only way to actually get the job done without it becoming an emotional meltdown.

He still hates having his hair cut. The mere mention of a hair cut is enough to make him stew and simmer about the whole thing. He would obsess over the idea of getting his hair cut. He would think of a million reasons why it shouldn’t be done. He would argue.

In short – haircuts are one big headache around our house.

So it was with great trepidation that hubby and I mentioned today that K-Oz needed his hair cut. Surprisingly, he didn’t say much. He voiced disapproval – but not much. When hubby said it was time for the haircut (sometimes K-Oz goes with my Dad to the barber and sometimes my husband clipper cuts his hair), K-Oz went into the bathroom without much fanfare.

Within a few minutes, the hair was shorn and there was no drama. No screaming, no tears, no arguing. It was quite peaceful.

So now, my son has a shiny new hair that makes him look even more like a miniature version of my husband. And he didn’t throw a tantrum. This is a small blessing – and I take them where I can get them.

A new doctor – again

I changed K-Oz’s doctor’s appointment to July 20. My husband and I, and K-Oz all agreed that he needs to see the doctor sooner rather than later because of his increasingly unpredictable OCD issues.

When I called to reschedule the appointment, I found out that the new doctor we just saw the first time in March is no longer there. We are having to start over with another doctor.

We didn’t like our first pediatric neurologist and it took months and months to find another one. We finally found the new doctor – and really liked her – now we have to start with another one.

*sigh* Such is life. I hope this new doctor is one that we will like.

Understanding and overcoming my guilt

When I first wrote about feeling guilt over my son’s special needs, I had no idea it would strike a chord with so many.

It seems as though all parents – whether their child has special needs or not – bears a certain mount of guilt over their children. So much more so with every parent of a special needs child I have spoken to.

We all have the same demons that swirl in our heads: What did I do wrong? Should I have done this? Could this have happened because I did this? Why didn’t I do this differently? Would my child be “normal” if it weren’t for me?

Here is something I have to continually preach to myself, maybe it will help you as you walk on this journey:

Guilt is a heavy burden to bear. It weighs you down, picks at scabs, pours salt in wounds and whispers insults.

You don’t have to listen. You are not required to carry that load. You don’t have to provide the salt and you can put a bandage over the scabs.

The fact that I carry this guilt around is my choice – even though I don’t want to admit that. I am the one who continues to pick up that baggage and toss it over my shoulder. My child doesn’t look at me and think “Why did you do this to me?” My husband doesn’t wonder how much I contributed to this issue.

This guilt is me – all me. It’s my insecurities and uncertainties.

So today, I am going to start unpacking that guilt backpack. I don’t want to carry it anymore. I plan to unzip it, and unload it one item at a time, until it is empty. I won’t pick it back up and lug it along. I will silence the little imp that tries to whisper to me.

My child is precious – just as he is. All of his special needs are part of him – and part of who he is. I couldn’t control whether he had blond hair or brown hair, or eyes of blue or green. I can’t control anything about him.

I’m setting the bag down – would you like to do the same?