Tuesday, 20 January 2015

I can't believe my child did ......

Listening to the radio this morning the conversations was "I turned my back for a moment and can't believe my child did___.  Many people called in sharing stories of things that their children have done.  The stories ranged from putting things up their nose, including a child that put magnets up their nose and needed removal with a super magnet, to sliding down the stairs and getting stuck in the drywall, to painting a sibling.  A lot of the stories were quite funny but relatively common and I was left thinking that some of my children make these children seem like amateurs.

It got me thinking about the differences between raising typical children and children with various special needs.  Over the years we have experienced many things when we have turned our back for a moment and as some of the children have aged the creativity has increased however the maturity hasn't necessarily kept pace. This becomes a problem when the children/teens are older but still need the supervision of an infant/toddler.  The supervision needs to be kept up like when they were infants/toddlers or even more so.  I know for us when we had infants/toddlers we could put them in a crib and expect them to stay there, also they required more sleep so naps also gave us a break.  With our teens needing this sort of supervision they no longer nap and we no longer have the ability to place them in a crib for their safety.  When the "overgrown toddler" is out in public people have certain expectations based on their size/age but frequently the child isn't able to meet these expectations.  As a parent you are often viewed as over protective especially if the child has an invisible disability.  A lot of supervision and advocating is necessary when you are raising children/teens with special needs and guaranteed you will have stories to tell when asked to complete the statement "I turned my back for a moment and I can't believe my child did____?

Saturday, 17 January 2015

Finding Support & Saving Money, A Trip to the Movies

Last night some of the kids and I ventured out to the movie theater to watch the movie "Paddington".  It is always an adventure going out with our crowd so I always try and increase the number of "possible helpers" just in case we need extra support.  We put the "call out" that we were attending the movie if anyone wanted to attend with us and got one additional taker.  The kids and I loved having their big brother attend with us and I especially like having the additional support, just in case.

All of our kids with special needs that qualify have "access 2 entertainment" cards that allow for a support person to attend the movie (or other activities as specified) at no additional cost. See more about the access 2 entertainment card here in a previous post.  We have found the lure of a "free activity" to be a benefit when recruiting support for various activities  really I don't think it's the free activity that lures them it's the goodness of their heart and the strong possibility of some really funny stories of what may happen on the outing.  The cost of attending a movie, for a large family already adds up, so having support people getting in free is a huge bonus.

Having the extra help for this outing was especially welcome as we were running late (really tried to arrive early) and then when we got into line to pay one child grabs my sweater as he starts to seize.  Big brother was able to take the seizing child and the others to sit while I got the tickets and snacks.  Trying to get everyone and their snacks into the theater and seated was another challenge - a note to movie theaters:  it would be really helpful if you could deliver the snacks to our seats!  During the movie we had a couple more minor challenges but all in all a good time.

Wednesday, 14 January 2015

What??? But I didn't say anything!!!! - Non Verbal communication

It's all about the non verbal communication around here.  A couple of our young adults have been struggling with the way they respond to situations in their lives, not understanding that their actions tell a completely different story than the words coming out of their mouths. Employers, teachers, friends and family are reacting to the non verbal response and the young adults are completely baffled because they didn't say "anything".

For example when asked to wipe down the table, as she failed to complete the whole job when doing the dinner dishes.  Nothing was said verbally but the book that was being read is slammed down on the table, a large sigh was released, rolling eyes, stomping into the kitchen to grab a cloth, more crashing and banging, then a partial cleaning of the table happens.  Those that aren't able to ignore their responses are offended, scared or nervous.  The other day one of our children's workers did not know how to respond after a similar negative response and was concerned for her safety.  I realize that a degree of this behavior is common with teenagers but our young adults are not teenagers and they are taking this behavior to a whole new level.

We have been upping our social skill lessons around here hoping that eventually it will click with them that most people find these behaviors offensive.  It is hard when the adults in question can't read other peoples non verbal responses so they don't understand they are giving off similar messages.

We have been studying facial expressions making note that most of the emotional information is carried in the shape of the mouth and the eyebrows.  Collecting pictures from magazines, photo albums and the internet we have been playing games labeling the emotion portrayed. Using mirrors we have been looking at our faces trying to make different expressions.  Once determining the emotion and getting better at this game then we added in the fact that each emotion has many degree's within that emotion ie from feeling happy to estatic or mad to raging.

Body language also has a role in our study noting that posture, gestures and movement also carry information about people's emotions.  Tone of voice is also being considered as it also conveys at least as much information as the actual words that are being said.  Being able to accurately read voice tone allows us to judge whether a person is angry, sad, happy, tired or scared - it also gives critical information about whether the person means what they say (are they being sarcastic? joking? sincere? teasing? friendly or unfriendly?)

By playing games, charades, and watching people (either from a distance or on television without sound) we have been practicing reading people's communication.  I am looking for ideas if you have any suggestions on teaching this valuable but complicated skill, please leave a comment.

Saturday, 3 January 2015

Am I crazy to make a New Years Resolution?

It's the time of year when many of us are thinking about New Years Resolutions, part of me is thinking I should make a resolution and the other part of me thinks why would I want to add anymore to my already overflowing plate.  As a parent with children....lots of children....special needs children....lots of special needs children, life can be crazy and adding anything needs careful consideration.

As crazy as life as a special needs parent can be it is extremely important to care for ourselves both mentally and physically since we are particularly vulnerable to burnout and caregiver fatigue.  Keeping myself healthy - mentally and physically - is an important resolution to take on at the start of the year and throughout and I encourage other parents to also consider taking on a similar resolution.

What should my resolution (and yours) look like?

Taking time for myself and my husband - If we don't have ourselves and our relationship one of us is going to be left trying to cope with everything alone.  For the last couple years hubby and I have made a point of hiring our respite worker once a week for a couple hours so we can have a "date night".  I will admit that there have been times when we are both so exhausted that we have thought about crawling into our travel trailer for a nap while she watches the children and other dates have included doing errands however most of the dates have been spending time with one another.  We also make a point of spelling each other off at other times so that we can pursue things important to each of us as individuals.

Recognizing what I have accomplished each day not what I haven't got done.  Life with all these children can be unpredictable so although I may have many things on my never ending to do list, some days just don't go as planned.  This doesn't mean I haven't accomplished anything, it's just different than what was planned.  Things that are really important I try to do first thing in the morning before chaos breaks loose or when I have someone available to help with the unpredictable parts.

Making time to enjoy life.  With so much going on it is easy to get wrapped up in the business and miss the enjoyment.  Life isn't a race to the end we need to take time and enjoy it.  Schedule time and seize even the smallest moments making sure to take time to play, enjoy nature and have fun.

Ask for help.  Recognizing that we don't have to do it all and that we can ask for help is huge.  Many people that are caregivers feel more comfortable helping others and asking for or hiring help is difficult.  For us we started looking at what services different businesses that us use have to offer.  For starters we were able to get our grocery produce delivered, started doing more of our shopping online, our home school education assistants were able to help at the kids lessons, and started making use of respite services in more creative ways.

Help yourself by resolving to care for yourself and enjoy the moments.