Take a Deep Breath and Count (Part 2)

In early December, Conner was diagnosed (potentially) with Sensory Processing Disorder (Part 1 of Conner's Journey). In addition to SPD, the doctor noted compulsion/anxiety disorder. Thus began our journey. The first things on our list: referral to mental health services for the compulsion/anxiety.

We were immediately received for an initial intake upon the completion thereof I was informed that because of his age (he was still 4) there were no services available for him. The system does not recognize anxiety or other related disorders in children under 6, therefore there is no funding or programming targeted for them. We were told to come back once Conner was in school. I took it all in, gathered up the kids and went home.

By the time Mark got home, I was crying. Not knowing what this meant, and feeling overwhelmed about navigating us successfully through “the system” was a lot of pressure that I took on myself. I knew I had to be strong for my son, but I wondered whether I would be able. So I started doing what I could and asking around, first to people I knew, and then branched out to anyone who might know anything on the subject.

Upon consultation with his ECS teacher, I was able to get my hands on some good reading resources. I spent the next couple of weeks researching SPD and related developmental disorders and helping Mark learn about it as well. Come January, we took Conner to his EEG. He behaved so well that he was rewarded with any toy of his choosing from Toys R Us. If you know Conner, you already know what he chose; a giant dinosaur. This time, a long neck.

In February, the occupational therapist assigned to him through the central public referrals contacted us and arranged to observe and assess him at school. As chance would have it, Conner had a great day at school. This, at that point in the school year, was the exception rather than the norm for Conner to manage transitions and activities without tantrums and crying. He even participated in social play with other children without being prodded. This was something to celebrate! The report reflected Conner’s behaviour on this one particular day, and while she acknowledged the background and history, her assessment was that Conner had no significant delays or problems. She suggested some behaviour strategies to me and some parenting tips and followed up by phone once.

This may have been the end of the road were it not for Conner’s amazing teacher. She believed quite strongly that he would benefit from the attention and help he would receive from an aide. She embarked on a task to help Conner receive P.U.F (Hallejullah! Funding for Conner) for that purpose. She arranged for another assessment, this time by a family and child psychologist and therapist. While the report had some similar notes to the first one done, the second assessment gave us a more thorough examination and follow-up, including two pages of suggestions and tips to help Conner. Using that report, along with her own notes, his teacher was able to attain funding for P.U.F.

Yippeee!!! In the same week, Conner was accepted by a private Occupational Therapist, Mary Culshaw, to her clinic in August. The clinic will specifically target skills and functions Conner will need to be able to carry out well to help him succeed in Kindergarten. It’s not cheap, nor is it very convenient but we are thrilled and looking forward to participating.

The next chapter: Conner’s pediatric follow-up and saying no to drugs

A Place to Call Home

For one reason or another, I have always felt a little out of place in the world around me. From the time I was in Elementary School I felt different from the other kids. The feelings deepened as I grew up and continued right through my University years. I was not an outcast, and I had family that loved me. But I just didn’t feel “home”. In the pursuit of a place to belong, I tried on different faces and personas and though I had some fun, nothing really clicked for me until I met Mark. He’s become my best friend, my confidante, and is so much a part of who I am that I have a hard time remembering my life without him. Finally, with Mark, I have found my place to belong: our family.

It wasn’t a conscious thought or plan to bring children into this world with the intent to satisfy my own need to belong, but I have realized that is exactly what has happened. In addition to the joy of sharing in the lives of two precious people, I have been able to find peace with myself as to where I should be in this world. As each of the individuals grows, so does my own sense of belonging. We’re to the point now that we have inside jokes and games. I live for those moments and treasure them – the ones that you had to be there to get it – sort of moments. It’s not always butterflies and roses in our family, nor is it for any family I’m sure, and I know that we will need to navigate bumps and curves along the road of life as we all grow. It may not always be pretty or perfect, but we will manage, as distinct individuals that together, form our unique family.

Hallelujah! Funding for Conner

Conner has been approved for Program Unit Funding (P.U.F.)! The short explanation - this means that he will have an aide in the classroom specifically to help him. The long explanation, well read the handbook! Either way, it's a reason to celebrate.

Through extensive efforts by his ECS teacher, Erinn Gallagher and some caring professionals, Conner will be able to start Kindergarten with some special attention with the hope and plan that it will help him adjust and transition. My personal hope is that the intervention now will give him the opportunity to continue to blossom into a well adjusted boy.

We have some hard work ahead of us, and regular appointments with Occupational Therapists and potentially a child psychologist, but these are all successes! Conner will receive some of the best treatments we have access to so that he has a the best chance of achieving "normal". I don't care about what any standards say, but I look forward to the day that my heart doesn't hurt for our guy when he struggles over some of the simple things that we all take for granted as being second nature.

P.U.F. is one huge step along that adventure!

Another sick day...

We're home sick again today. Conner has a fever and a headache which means no work, no sitter. It's one of those early morning decisions that needs to be made and then phone calls followed up to work, the sitter and any appointments that I may not be able to keep now. I'm ok with it, my kids come first and I made myself a promise when I started working that I would never let it get in the way of being a mom. But I still struggle with accepting less than perfection from myself when it comes to my job.

I know I am absent more than others in the office, and likely more than many in my division simply because I am the mother of young children. Add to that attendance to Conner's appointments, and extra sick days related to his stress levels, and I know I'm not doing my job as well as I could were I not away so much. Obviously, my children come first, but I do feel like I'm trading off success in my career for the choices I make as a dutiful mother. Being I only work part-time, it makes sense for me to stay at home with the kids. And, my manager is superbly understanding and accomodating; whereas Mark has a tough time taking one day off for " legitimate" reasons, much less a sick kid. But I still feel gypped in some ways.

I put my career aspirations aside, subject my co-workers to high absenteeism, and have to be comfortable with less than stellar job performance because it's more acceptable for me as the mother. The sacrifice is worth it, especially considering I had always planned to be a stay at home mom. Financially, we just couldn't make it, so we decided together that part-time work would be a compromise in our family's best interest. What lurks in the dark recesses of my mind though is that it just seems unfair that as mothers it is accepted and pretty much expected for us to give up careers and life outside of our families while the opposite is true of fathers. Mark and I are a partenership and making decisions together, so I am not complaining about my role in my marriage.

OK, maybe whining a bit about my role in society. What can I say, it's a sick day.

Take a Deep Breath and Count (Part 1)

From the day that he was born, our son Conner has never followed the book. I threw "the book" out when he was 4 1/2 months old and started crawling. He pulled himself up at 5 months, and was walking by 6. In some of my online parenting communities I've had to actually pull out the photos as proof that my guy achieved these milestones at such a young age. When our super intelligent and very advanced little boy (don't all first time parents think that?) started lining up his toys in stick straight lines, or categorizing them by color, or shape, size and type(sometimes simultaneously) we were very proud. I wouldn't admit to it back then, but I did wonder if he was a tad too focussed. But everyone was so proud and happy, I dismissed my quiet wonderings as to being a new mom.

Everyone talks about their toddlers being busy, and I told myself that all Moms felt theirs was the busiest. But when I watched other little ones, and talked to other Moms, I realized that Conner did require alot more energy to keep up with than other children. There were other little things; like his inability to wear anything with a tag, his food tolerance for uncooked vegetables or crunchy things only, or how every night we started in the rocking chair with me holding him as firmly as possible so that he would stay in one place long enough to fall asleep an hour later that all together, added up to at least a very challenging and sometimes frustrating job as a parent.

Then the terrible twos hit, we thought, a bit early. Tantrums, crying, irratibility... we were prepared for this but were surprised when it came a bit early at 16 months. Oh well, he'd hit other milestones early. I don't know when it started to become louder, but that voice inside became more insistent that something was off about the time we discovered we were pregnant with our second child. Throughout the next few months, Conner increasingly became more difficult to manage. At his yearly exam, the doctor noted that she could not understand Conner. We had told ourselves he simply wasn't interested when he stopped talking a few months earlier. His tantrums, becoming more frequent and lasting longer were due to frustration at not being able to communicate, we thought. Speech assessments and then speech therapy followed. Thankfully he responded well, and enjoyed the one on one attention that he got. His sister had been born during this time, colicky for the first couple of months and very demanding of my time; her arrival was very difficult for Conner. I had to watch him very closely and didn't trust him around the baby as he deliberately tried to hurt her when he thought no one was watching.

As time passed I took on more guilt. We had been consistent. We had sought advice from everyone we knew, and yet we felt totally lost. Our child was healthy and we saw days that were bright, or on the "bad" days, glimpses of the guy we knew was there, so really we couldn't complain; he was healthy after all. Yet, I was afraid to even go to the store because I simply couldn't manage. Everything seemed so difficult, we were frustrated so much of the time to the point we both would break down and cry at the end of the day - we MUST be doing something wrong. Even though there are two of us, I felt like a failure as a mother.

Our beautiful little boy was spending more time in time out than he was playing, and increasingly he was withdrawing from us and the world around him that I was scared. Autism, that bad ugly word that no one really understands, loomed in my mind. Finally, I sought a consult to a pediatrician.

That day in December 2007 was the first time I had ever heard the words Sensory Perception Disorder (SPD), so foreign was it to me I had to have the doctor write it down so I wouldn't forget it. While it was a relief that autism had been ruled out (though he does exhibit autistic traits) we suddenly had a bunch of reading and learning to do. It was intimidating. But even while sitting in the pediatrician's office, a transformation happened inside me that I think started us as a family on the next step of Conner's Journey; I realized we weren't total failures as parents! From that day on I started to repeat (inside my head of course) "It is ok to be frustrated, he is a challenging child." With that out of the way, we were more able to focus on what was most important: Conner.

So began our journey that I plan to diarize here, as much for myself as for anyone who might read it. I can't promise regularity or perfect organization, but it will be an account that is honest and true as to how SPD affects my son and my family.

Sounding Off - The Hullabaloo Around " I Do"

The following is a rant, or soap box item that is a general issue. The title, Sounding Off, is the indicator that this is an issue that affects me outside of my family bubble. knowing myself and my strong opinions on just about everything, there should be more to come.

It's that time of year again: the wedding season. If you’re even thinking about getting married, or know someone who’s thinking of getting married, much less actually in the throes of wedding planning madness, there is no escape from the endless details and excitement. Even if you are mostly unaffected and oblivious to the wedding bug, it’s hard to avoid the office chat that can also adopt a wedding theme at this time of year. One recent conversation revolving around a debate between a mother and daughter over a dress and another mother and daughter fight over shoes, affected me for the rest of the day.

Family fights, tearful brides, budget woes that in themselves contribute to higher tensions; this has become the accepted marking of the beginning of a couple's journey in life together? It’s certainly easy to get caught up in the marketing; flowers, cakes, dresses, shoes, bubbles, tuxes, invitations, venues, menus, and more all adorning the glossy magazine covers showing picture perfect happy couples in romantic splendour. I suspect we as a society easily lose perspective by confusing the "success" of the wedding as a template for the marriage.

A wedding is the union of two people who are choosing to spend the rest of their lives together. The rest is just details, period.

Slowing Down

In April, Mark and I made a decision to put Conner into soccer. Mark signed on as the Assistant Coach, and even though we had no idea what was coming our way, we were welcoming it with excitement!

And then reality hit. We weren't ready for it at all.

A big part of our lack of preparedness was a misunderstanding of what the whole program is about. We had pictured and expected: kids on a field, with a ball and hopefully they would run the right way towards the right goal posts most of the time. The reality: Practice on Tuesday, game on Thursday and two tournaments, one of which is out of town. Ok, so it was more than we had expected, but we could handle it, for Conner.

So our lives morphed from the casual routine that we've all become accustomed, to one that was tightly scheduled, on Tuesdays and Thursdays at least. One small deviation from that schedule, and you guessed it, we're late. I won't go on too long; the soccer season in the Coleman family certainly didn't either. Conner simply couldn't handle it and while we had to wrestle with ourselves over the responsiblity we felt we owed to the team and to Conner to stick it out, our responsibility to look out for his best interests reigned. We hadn't considered the costs to our family and to each of us as individuals when we signed up. And while the benefits are many, in our case, they just weren't enough.

So for now, we're going to take a pass on organized activities. Maybe we'll join next year or the year after, or who knows, maybe our unique little family doesn't fit the organized mold.