Lonely

The other day I was at an Ontario Early Years centre for work. The place was packed with parents, Grandparents and kids. Some moms sat back and let their kids explore, others stayed right with their child. What I didn’t see was a child that was like my first. I didn’t see a child that moved from thing to thing, hitting and pushing and crashing other kids toys along the way. I didn’t see a kid that was swearing up a storm and finding a way to escape. I looked around and I felt longing, I wished that I had experienced what these parents were experiencing (I did experience a little with our youngest son, J, but I was also in the midst of trying to parent a very complicated child).2002 09 08 Hardhat02

Early years being a mom were quite honestly extremely lonely for me. I had (and still have) one truly great friend in town and she listened to so much of my angst during that time.I don’t know how she was there day after day. Meanwhile, people I thought were friends just cut me right off. One friend was a Psychometrist (a Masters degree in Psychology) and though we hadn’t been friends for long I was hopeful the friendship would blossom once I had a son the same age as hers. We hung out a couple of times and at some point my son taught her son the word “bad” as in “bad boy”. She was really upset about that and we didn’t really talk after she witnessed one of my son’s meltdowns. I really expected more from her, I thought because of what she did for a living that she would have understood our struggles. But this was not the case. The other friend to cut me off was someone I would have professed to be my best friend. We were friends for years and we were godparents to all 3 of her children. She co-hosted my baby shower with the Psychometrist. She watched my son for me when no one else could/would but she became convinced that we were not parenting him properly because if we were he wouldn’t be acting the way that he was. In a fit of exasperation one day after watching him she completely cut us off. It was a painful break up and I missed our godchildren but I had no idea how to make it better so I let the friendship go.

So there I was,with a swearing, kicking, screaming 3.5 year old and I had 1 friend in town. All my friendships from work fell by the wayside – that was as much my fault as anyone else’s. Reaching out to people seemed like so much work and I just didn’t have the energy after dealing with C all day. It wasn’t until years later that I really understood how lonely I was during that time. It’s amazing how it still hurts after all this time. I wish I could go back and change how I managed those early years. He still would have struggled and I still would have been exhausted but it would have been good to not have been so lonely.

The iPad

As I open the door he launches himself out of the chair, his fists are clenched and his voice is unusually harsh.

“Did you and Dad buy me an iPad?”

I stop in my tracks and ponder his question. Why would he think we got him an iPad and even more importantly, why would that make him mad.

“No we didn’t. Why?” I ask. His hands are no longer clenched and he flings himself back into the chair, a loud sigh follows.

“Because there is one in my class with my name on it”

Finally I know what has happened. The Psychological Assessment we had done privately and then shared with the school said that to access the Ministry of Education curriculum that he would need technology. Obviously the school board opted for an iPad. Which I think is very cool and forward thinking of them. But at the moment I have a very unhappy boy on my hands. So we talk. We talk about people needing glasses, braces, wheelchairs, canes and how all those things help people to do everyday things they otherwise can’t do. I emphasize that iPad’s are considered cool and that many kids will actually be envious of him. And in the end I tell him that the truth is no matter how he feels he has to use the iPad, that using it will help him especially as he gets older.

He listens to it all and I can tell he’s taking it in but nothing can make him happy about being different.

A week later he comes home and tells me how his teacher took him aside and had him dictate a story to him while he typed on his iPad. The teacher told him it was one of the best stories ever. He beamed with pride. That same night he spent most of his time on his iPad. Hopefully from here on out its all good news about assistive technology.

6 months

I just finished with our 6 month checkup with the Psychiatrist for both my boys.  For the first time ever I had nothing really to report. Home is good, school is good, day to day living (self help skills, friendship, extracurriculars) all good. At the end of our visit the doctor shared that he wished his medical resident was with him today because so often he sees kids with diagnosis like my boys (and C has even more than most) and those other kids are struggling and their parents are struggling and for many the school is struggling.

Then he asked me what I thought made the difference for my boys. I answered humbly, but truthfully – we work like crazy as a family to give the boys what they need (like structure and routines) and we work closely with the schools – including making sure our boys have the accommodations that they so desperately need.  In turn the schools have really risen to the challenge and both are doing a great job. C just recently received  an 81% in Science and J received mostly all B’s with an A in Gym. We also have a lot of support for C outside of school as well.

It makes me sad though for other families that struggle – where one or both parents have their own issues attributable to ADHD or LD or mental health concerns. Parents who just don’t know what their rights are when it comes to school or who are afraid to try to work with the school because they just don’t know how. I feel bad for parents who get schools that, for whatever reason, do not want to work with the child and parents to make school a better experience for all. I feel bad for parents who don’t get the help they need for their child – for example just having ADHD in this city will not get you services.

It’s amazing to me that despite years of research we don’t have a parenting class for those parenting a child with ADHD and/or LD, a place where parents can learn various strategies (and choose what works for their families) as well as a chance to mingle with other parents and perhaps forge new friendships.

In the end my boys are doing well and for that I am eternally grateful.

To Tell or Not to Tell

Over the years I have given a lot of my time and brain power (as diminished as it might be on many occasions) to this question:

When faced with a situation in the community where my child has been struggling or done something to bring attention to himself – do I TELL that person or persons about his complex needs?

Which then inevitably lead to more questions:

If yes, then how much or how little do I say?

Do I give the correct DSM label? or just give layman’s terms and references?

Am I violating my child’s right to privacy by telling?

Will the person honour what I have told them or use it in some way against my child and/or me?

WHY should I even care what other people think about my child?

Am I wanting to tell them to alleviate my own feelings about this event (embarrassment, anger, frustration) or am I truly doing it to assist my child in some way?

Even if I am doing it because the person has pissed me off and I want to wipe that know it all smirk off their face then isn’t that ok sometimes? Aren’t I entitled to be less than perfect?

And on and on and on.

You get the picture.2011-01-22-153132

There have been many times I have shared with individuals and groups (some more successful than others) and times where I have chosen to remain somewhat silent. In the end there is no clear cut rule or answer, at least not for my family. There are times where explaining to other people will undoubtedly help my son and/or our family. There are times where it is clear that all the explanations in the world will not change the other persons or groups assumptions about my son.

The biggest thing that I have mulled over the years is this: In so many ways we should not have to divulge private information about our son or our family just to gain understanding, compassion and acceptance from the community. In an ideal world people would not be quick to judge and condemn. People wouldn’t assume that a child “acting out” is the same as a child “being bad” or that the parents are doing a bad job. In an ideal world we would all be happy to accept and acknowledge that everyone is doing the best they can do. That people would be willing to cut fellow parents some slack and to not condemn each other.

The world is not ideal.
However, I must say that, in almost EVERY instance where we have chosen to share some of our son’s story we have made a difference. A difference to him, to our family, to the individual or group that we shared with and many times we have either witnessed or been told about how this new understanding of our son and one or more of his disorders has now lead to increased understanding/awareness in our community beyond our son. It is like its own “pay it forward” scenario.

I often tell service providers involved with our son that I hold near and dear to my heart the philosophy that compassion is key and knowledge is power. Building awareness leads to increased understanding and, in some instances, to change for the better for more than just my son. It sometimes means making us somewhat vulnerable and it means choosing to believe that there is inherent good in humankind. I am always asking people involved with my son to extend to him the courtesy of understanding that he is doing the best he can. What kind of hypocrite would I be if I didn’t follow that same practice?

I choose to believe that people are doing the best that they can and if I take the time to share and explain that they will then use that information, even in the smallest of ways, to do even better the next time.

Just for Today

frazzled parent

I wrote this a few years ago but figured there are probably many parents who can relate

Just for today, I’d like to not feel like I have to fight for my kid

or that I have to convince people he DOES belong

Just for today, I’d like to not have a lump in my throat

or a huge knot in my stomach

Just for today, I’d like there to be no phone calls and emails

or the need to explain to people the same things over and over and over

Just for today, I’d like to not have to champion my son

or to feel like if I don’t speak up my son, and others like him,

will be bullied and hurt by the people who are supposed to help them

Just for today I’d like the world to not be a scary

and potentially dangerous place for my son

Just for today I wish people could just do the right thing

because it’s the right thing to do

Technology before anyone is ready

My oldest son is in Grade 10. He received his first computer in the fourth grade. I’m not sure what kind of training his teachers received. I know that I asked and received an hour with the technology person who walked me through a hard copy printout of the one computer program he was using – Kurzweil.  At the end of our one hour I wasn’t sure I really understood it all but I was too shy or embarrassed (maybe both) to say that what would really help me would be to see it in action.  I figured I would just wait and get our copy at home and just try it out to learn the functions. It took us months to get the school to agree to send the program home for us to download it onto our home computer. By that time our son was able to walk us through the program. But he used it very rarely in class and I would be the first to admit that he was not great at typing so the computer was limited in what it could do for him if he couldn’t input.

Grade 5 was a wonderful technology year – the EA or teacher scanned in every work sheet or test into his computer and we saw great amounts of output as a result. But it was limited to Kurzweil – it seemed to me that there must be more programs that would be useful. Seems strange to buy a laptop for a student and then limit them to just one program. I occasionally asked but did not really get more answers.

Grade 6 through 10 his use of the computer fluctuated and he never really got back to the level they were at in the 5th grade.  Add to that frequent breakdowns of his computer and/or scanner and printer and his technology use is sporadic at best.

I believe technology is a wonderful tool that can open up doors that otherwise remain closed for our children with learning disabilities. But to do so, there needs to be adequate training of teachers, support staff, student and parents. There needs to be a commitment from staff that it is going to be utilized to its fullest and it needs to be taught to the student that this is the same as someone needing a cane or a pair of glasses. With the introduction of iPads, iPods and other handheld devices I believe that technology in the classroom will soon be the norm rather than the exception. I look forward to this as my youngest moves closer to having technology to access the curriculum.

Back to School

back-to-school1Every September brings excitement and jitters – and I’m not talking about my kids. I’m referring to me.

I worry what kind of teachers they will get.  I worry less for my older son now that he is in highschool. But for my youngest I know that it is the teacher that will make or break his year.

He almost always likes his teacher – he’s been lucky and primarily had very nice teachers. But nice isn’t necessarily what a child with severe ADHD truly needs.

What he needs is an organized but not overly cluttered classroom. He needs a desk – not a shared table like is so popular now but his own set piece of real estate. He needs a teacher that can ignore his movement in his chair and the inevitable times he falls out of his desk each day.  He needs help to organize himself and a set of eyes to make sure he has written down homework and has important papers in his agenda.  He needs a teacher that is creative and very hands on who has the kids do more than just worksheet after worksheet. He needs a teacher that realizes keeping in a child with ADHD at recess to finish school work is a bad idea all around.

Most of all he needs a teacher that can see past all that is ADHD and can make a school day challenging and see past it and see my beautiful and caring young man.

Afterall, as his teacher last year commented “He just gives 110% to everything he does”