Thursday, 13 March 2014

Meetings and munchkins

I was already starting to educate myself on the terms and definitions used by developmental therapists and social workers, by the time I met with the social worker at the regional agency. Terms like receptive language and audiology and sensory processing disorder. I read books like "The Mislabeled Child" and "ADHD and your child." I already was somewhat familiar with ADHD -- my oldest daughter had been diagnosed the same summer I was beginning the journey of investigation with my second child. But this didn't seem the same.

While I was waiting for the paperwork to be processed and referrals put in place, things were going from bad to worse at home. My daughter seemed to have abnormal pain issues. She could run full tilt into a wall, like 2 yr olds do, but it wouldn't phase her. Yet cutting her toenails required 3 people to do, as it seemed to cause agonizing pain! Falling down and cutting herself didn't seem to slow her one bit, but a minor graze on the arm in passing was the end of the world. She also seemed to have no self-soothing regulators. She would get herself so worked up, she would melt down into a screaming fit, that would last for hours. I remember just rocking this rigid, screaming child, holding her arms down so she couldn't scratch her face or bang her head, for hours on end, crying myself, hearing the cries of my infant daughter or my older daughter and knowing that I couldn't help them at that moment, because if I left this child, she would seriously hurt herself.

Getting her dressed was a battle, feeding her was a nightmare, and bathing was something done only as necessary and as quickly as possible. Our days were structured to minimize the meltdowns as much as possible. Loud noises were dealt with as quickly as I could, because she startled so easily. Unfortunately, the apartment building I lived in did monthly fire alarm tests. After the first couple of tests, I asked for a schedule, so I could make sure we were elsewhere for the day, because the fire alarm going off created havoc for my daughter.

I met with the social worker a couple of weeks after I had seen the clinician at the Early Years Centre. He was a nice gentleman, who listened carefully to my growing list of concerns regarding my daughter. He photocopied my report from the SLP. He promised to contact the public health unit from our previous county of residence, and took the time to explain to me about the resources available to me, as her parent. It was a couple of hours while we covered all the forms and consents necessary to access the services she possibly needed.

One of the things he suggested that I didn't like, was the idea of putting my daughter into daycare. I knew, without knowing how I knew, that she would *not* do well away from me. I resisted, but agreed that if after she was assessed further, I would consider it.

He also helped me get the names of some pediatricians in the area. My best option, according to him, was to pursue a medical diagnosis, while getting her therapeutic services.

Armed with this information, I left to make my own phone calls, and to wait for the assessment time, to find out more about what was wrong with my child.

To be continued...

Tuesday, 11 March 2014

Transitions and delays

Life has a way of taking interesting twists and turns. Right around the time that I was growing more concerned about my daughter's development, my marriage was disintegrating. So by the time we saw the SLP, I was already separated, and making plans to move my little family back to where we had come from. Due to the move, I did something I was very thankful for, and did with every other specialist we dealt with after that. I asked for a copy of her report and assessment. 

Every early childhood development specialist writes a report. It goes in the child's medical file. It usually gets sent to public health as well, or at least to your child's doctor. But it's rare, and odd that the parent would see this report or that file, unless they request it. I cannot stress enough how highly I recommend every parent with a special needs child ask for copies of these reports! It is essential to getting your child the best care possible. You are your child's best advocate. 

My daughter's SLP report was supposed to be transferred to the public health department in our new county. It never was. From my inquiries, it appears that the report and case file was "lost in transit". But I had a copy. Armed with this report, I went to an Early Childhood Education Centre, where you could meet with various early childhood specialists, including a speech-language clinician. This person is slightly different than an SLP, in that they don't diagnose, but they are equipped to make referrals for further evaluation. 

I walked into the clinician's room, and I introduced myself and my daughter. Before she even began to ask about my concerns, I handed her the copy of the SLP's evaluation that I had, and asked her to read it, and tell me what I should do next. I waited patiently, while she paged through the assessment and report, watching as her eyes widened at some areas, and narrowed at others. When she finished a few minutes later, she looked straight at me and told me she didn't even need to work with my daughter. She was going to refer us right away to a local agency that would help us further. She handed me a social worker's card and took down my information, telling me to expect a call with an appointment in the next day or two. 

She was as good as her word. We got a referral to a new SLP, as well as an occupational therapist, and an appointment with a social worker to talk about further steps.  Finally, I felt like we were getting somewhere, and I hoped that soon my daughter would be "fixed". 

I hoped too much, as I later found out. 

To be continued.. 

Monday, 10 March 2014

Car troubles

I bought a new-to-me van a few weeks ago. Looks great, and is in pretty decent shape. There were, of course, a few things I needed to fix. I expected that. Tried to budget for it too.

I have never owned a vehicle before, but as they say, there's a first time for everything. It was absolutely necessary I have access to a vehicle, and given my recent history, being independent is a major plus here. I really liked the *idea* of owning a vehicle, but I have no idea what I'm doing in reality.  There are a lot of pluses about owning my own van. My call on when I get to use it, no having to work around someone else's schedule, no worries about hurting someone else's insurance if I break it some how.. But there are a lot of cons too. Like, it's my insurance. It's my responsibility to fix it. It's my gas!

I never realized just how much a car can actually cost. There's not just the purchase price, there's sales tax on that purchase price, license plates, not to mention the license itself, and registration. There's insurance and gas and oil and washer fluid and parts. There's mechanics to pay and tests.

With this van, I've had to have the wheel bearings changed in the front. Thank you stbx for doing the work. Then I called a garage to do the back brakes.. and that's when I was told to check for recalls. What?!? Yes, I was told, call the manufacturer and check and see if this model ever had a recall done. So I did that, and sure enough, there was a recall on it. I ended up having to take that in and get some repairs done. Thankfully they didn't cost too much. Finally I was able to take it in to get the brakes replaced, but oops.. I forgot a certain part in my parts order.

So now I'm stuck. The company I ordered all the parts from originally is out of stock on the one part I do need. The temporary license is about to expire, and there's still one more test to be done. The garage doesn't work weekends, which meant all weekend wasted.. How do I get the part (where do I get it from??), get everything fixed, get the test done, and get the license sticker before the temporary expires?? I have no idea. Nor do I know if I can even afford to do all this.

Yikes!

I know it will all happen in time. I know everything will work out. I know it may be a bit uncomfortable for me for a while. But it is what it is. There really isn't much I can do right now about it all. Just one of those things..

Makes me kinda wish I did an auto repair class instead of music lessons as a kid though. More useful!

Sunday, 9 March 2014

Scary sounding words..

I remember being in what looked like a playroom, strewn with all sorts of brightly colored toys, with my 2 yr old daughter. It was actually my birthday, and she had just turned 2 five days before, but we were here for a very serious reason.

My daughter was being evaluated by a speech-language pathologist (SLP). For the uninformed, this is a person trained in all things communication-related, from problems physically forming words with lips and tongue, to the more abstract understanding of language and communication of wants and needs.

I learned that there is differences in the disorders of communication. One may have no issues understanding what is spoken, or in determining what to say, but in the actual speaking of words. This is where children (or adults, for that matter) have issues with certain sounds, or stuttering, for example. One may have issues saying anything at all, while understanding perfectly. This is the mute child, or near-mute child, that requires help in "expressive" language skills. Then there is the child who can say what they want, but has trouble understanding what is spoken to them -- difficulty with "receptive" language.

Then there was my child. My child who had no discernible physical difficulty with words -- she could say all the sounds, and in fact could make several sounds well beyond her developmental peers -- yet she did not speak "real" words. She had no communication, whatsoever. And beyond that, she seemed to have no understanding either. The SLP was very concerned.

Two year old children should have at least 20 real words in their vocabulary. My child had perhaps 5 words that one could make out, but she did not use them with meaning. Two year old children should understand simple one-step directions or requests. My child did not recognize her own name, let alone any request. Two year old children should engage in "conversation" type interactions, with give and take pauses. My child did not recognize anyone speaking to her, and if someone got her attention, she would respond with a blank stare, and return back to whatever it was that had occupied her before the interruption. Two year old children generally will express their needs with words, gestures, or sounds. They generally have moved beyond the "crying/screaming" phase of infancy. My child.. well my child had several screaming fits every day.

It was at this office that the word "autism" was first suggested. The SLP pointed out not only my daughter's issues with communication, but also several behavioural issues that seemed to her to fit the profile of autism spectrum disorder. She recommended evaluation by an occupational therapist, as well as a pediatrician.

My heart sank, and my mind went blank. Autism conjured up images of children who were uncommunicative, rigid, acted out and showed odd twitches and habits. I prayed desperately, "No, God.. not that!" even as the SLP began to point out to me what she was seeing. Things like running on her toes (an apparently characteristic behaviour of autistic children), the inability to focus on just one item, the lack of "pretend play", the lack of "meeting eyes" or social interaction, and some "obsessive" behavioural patterns.

I could hardly take in what I was hearing. It was a shocking suggestion. I had come to terms with the fact that my daughter wasn't "normal", but I hadn't thought that there wasn't a "fix" for it. I had thought that with a little intervention, maybe some therapy, she'd be "normal" again and we'd go on with life, the way any family would.

This was my introduction to the idea that life.. life with this child might never be "normal"...

To be continued..

Saturday, 8 March 2014

Bad days and Good days..

I have a cold. A middlin one.. not a bad one. I'm only slightly congested, I sneeze a little bit, not frequently, and about the worst symptom for me is the headaches I seem to get more often. Probably due to my sinuses..  It isn't enough to stop me, but just enough to slow me down a bit.

Life as a single parent doesn't allow time to get sick. There's no one else to cover for you, so you can spend a day in bed. Bad day, good day.. it doesn't really matter, when there's kids to be fed and changed and cleaned up after and put to bed and cuddled, and you're the only grown up around.

It's a whole lot easier when you're having a good day. On the days that you feel energetic and productive, and you get three loads of laundry done, and read stories to the kids for an hour, and made a three course meal to boot -- it's a whole lot more enjoyable being the only adult around.

On the bad days, you may end up on the couch, with a bowl of popcorn (that your kids eat 3/4's of), and the kids may not actually get dressed, and supper consists of cereal and juice.. and you let them watch movies or play computer games all day, and you surf Facebook on your phone, and ignore the fact that your toddler just spilled the cat's water -- again.

Most days aren't either. Most days aren't horribly bad.. nor are they the amazing "where's-my-super-mom-cape" days either. Most days, I wake up and hit the ground running. The kids are dressed and fed, the cat's water is cleaned up and refilled, and the laundry may actually make it into the dryer, at least. I can usually read at least one story too, most days. And if supper is chicken nuggets and fries, a few cut up veggies will usually show up too, as a token towards actual nutrition, and I comfort myself knowing I remembered their vitamins that morning.

Every once in a while, my day is memorable. But most days, it's such a blur, that between untangling the baby, chasing the toddler, refereeing the preschooler and kindergardener, and dealing, yet again, with my preteen's attitude.. I don't remember much.

They say to treasure each moment. I simply try to make it through the moments. I think if I were to stop and think about what I'm doing every day, I'd panic and be overwhelmed. But who has time to stop and think?

On with the show!

Tuesday, 4 March 2014

A challenging child..

It is every parent's nightmare: that moment when you realize that something is not quite right with your child's development. For some it may take a while. It's a matter of pride. As they say, denial is more than a river in Egypt. But you can only excuse something for so long. “Maybe she'll outgrow it.” “Maybe he's just a late bloomer.” “It took me a while to figure out how to xyz too.”

For me, it wasn't that long a journey to admit that, yes, there was something wrong with my daughter. It was kind of obvious – no 18 mo old should still be speaking mostly in baby babble, and still wanting to crawl more than walk. Her delayed development at first was a curious thing, then slightly alarming, until I realized that I needed to get help.

The first stop was our family doctor. Since she was due for her 18 mo old well-baby checkup, that's when I expressed my concerns. I came prepared, with a list, matched up to the baby-development checklists (www.ndds.ca). She wasn't matching up everything on the 9 month old list, let alone the 12 months or 18 months list. At first my doctor was surprised, but then she looked at my daughter, and I mean, really looked at her.

Z was standing, walking, but she didn't respond to her name. She didn't call me mama. She seemed lost in her own world, babbling away. She flitted around the room, in a circle. First, she put her bear on the bed. Then she ran to the door. Then she would run back, get her bear, and go to the chair. She would sit for a few minutes. Then back to the bed. Rinse, repeat. She did this same cycle for 20 minutes, while the doctor and I chatted.

My doctor looked at me seriously, and I will never forget her face, as she asked, “Does she do that often?” I felt a sudden shiver of fear run down my spine, as I nodded. It was true, though I had never really thought about it, before. But yes, this child would repeat the same activities over and over again, constantly. Obsessively.

There was something wrong with my child. The journey of discovery, heartbreakingly, agonizingly desperately searching for answers, would take approximately the next 4 years, before we got a confirmed answer as to why my daughter was like this. The knowledge of what to do with that answer is something I'm still learning.


To be continued.  

Monday, 3 March 2014

Dying dreams..

The biggest question, when you're a child, that every adult asks you, is "What do you want to be when you grow up?" It invites imagining, invokes exciting visions of "being" a firefighter, ballerina or superhero. Adults encourage children to dream big. We tell our kids, "Anything's possible!"

But as we grow, somewhere along the line, the tune changes. A 4 year old's dream of being an astronaut may be tolerantly encouraged. Mom and Dad buy Junior a "space helmet" or a model of a space shuttle. They indulge him with stories of aliens and space exploration. But as he grows, he is told to leave such childishness alone. Be realistic. Only certain "special" people get to be astronauts -- those with high math and science aptitude, those with money for top universities.. and Junior's parents work long hours just to keep the lights on and food on the table.

Somewhere childhood dreams get laid aside for the "reality" of growing up. But why do we trash our childhood dreams so much? Little kids have no expectations laid on them, but by the time they hit middle school, mom may be pushing her daughter towards law school, and away from drama class, even though all the little girl ever wanted was to be a movie star. All too often, parents try to live vicariously through their children.

Even if there is no parental expectations of certain career paths, life has a way of discouraging us from really following our dreams. Our peers reject and pressure us to conform to the "typical", to not take the risk or try harder.. schools discourage creativity and individuality, since that's hard to quantify and can be disruptive.. and older generations look down on innovation -- "what's good enough for me, should be good enough for you" is often the motto.

The fear of rejection, jealousy from others pushing negativity, the pressure to conform -- all discourage dreaming big. The childhood answers to the big questions "What do you want to be" now become "what will you do to make a living" in young adulthood. We trade our big dreams for small goals. And move back in with mom and dad, because fear pushes us back to the safe familiarity of home.

I've been dreaming lately. I've had to give up so much -- some of it willingly, I admit, and some from my own poor choices -- but a lot because of the circumstances of my life, and the choices of someone else. And I find myself wondering if some of those dreams should be recovered, taken back on, reached for.

What if?  It's a theme of my musings, in the darkness of the night, as I sit and nurse my infant daughter. What if I .. I pray for direction, and my imaginings keep turning back to the "what if"?

There's a book in Christian circles, "What happens when a woman says yes to God." I've never read it, but the title always caught my attention. What if I did say yes.. took the chance, followed the dream that had been dying in the darkened corner of my heart?

Just maybe.. just maybe dreams don't have to die, because of growing up. What if...