A Checks and Balance System

It is funny but as a parent we can lay down the law.  New rules for when our children have officially been “given the inch and taken the mile”   “From now on…” is something my children hear, usually followed by the new rule and what will happen if they make a bad choice and  break the rule.   So for a while those  rules are enforced and followed but then slowly, and almost without being noticed, the vigilance ebbs away as does the “towing of the line” and soon the situation needs addressed again.

I think this happens because LIFE happens.  We can’t enforce all things all the time and even though things head back to the starting point sometimes, sometimes change does take hold and well, when that happens …that is a great thing.

So I am not a stranger to this checks and balances thing, but I think I really need to share that I am laying down the law to myself with regards to how I am growing with Elizabeth this year.

For those of you who have been following my blog, you know already that Elizabeth has SPD and dyspraxia.  But for those who are new to this post, she was diagnosed at 2.5 years old and is now 17.  Yes, that is 15 years into this journey.  And as such, she and I and our family have been in the fight for so long, that we sometimes cannot recollect a memory that does not involve some way we adapted life to her and her disorders.  This being said, sometimes I MAY feel the need to control things,  I MAY feel the need to keep things in as much order as possible( for both her and us)  and I MAY feel my way is THE WAY  ( please read those last couple sentences as sarcastically as possible)  Because YES, I am guilty of all the above.   That probably was not a problem when Elizabeth was younger, still probably not a problem when she could not make decisions well, and maybe still not a problem when she asked for help.

But now it is a problem and the reason is called ” SHE IS 17 YEARS OLD”   Yes that is the title I am giving this problem…to me it means that she is ONE year from being considered and adult.  ONE year from voting!!!!!  When said this way I am a touch floored.  I guess I have been keeping my head down and working with her so hard I have not stopped to think that SHE IS 17!

Once I peeled myself off the floor, I decided to lay down my own law…. a sort of checks an balance.  I told myself to think how I felt when I was 17, to remember how Emily, our oldest child, felt at `17 years old.  and to PROMISE myself, to think of these things before talking to Elizabeth.   Just so that I can phrase things in a way to respect her age.  I don’t want her to feel like a little child being told what to do.  I want her to feel that she does have a say in many things and that we can decide things together.  I want her to feel she has some power and say in her life.

I am trying to remember to say phrases like ” What do you think you would like to do” “How about we try this?”  or “Let’s set the timer for 30 minutes and when it goes off, what do you want to do next?”

I think it has made a huge difference in our days, and I look forward to expanding Elizabeth’s choices and options… now I pray the strength to keep it up, and not let it slowly fade away like my example at the beginning of this post.

It is easy to forget how typically developing children your child’s age may feel, what they like and decisions they get to make.   Sometimes if you can think about these typical things you can see which ones you can offer to your child.

I am in no way perfect in how I deal with life with our beautiful child I wish I would have done this many years ago, but perhaps my personality hindered me or as I like to think, it happened when it was supposed to happen.  In any case,   I offer this out as a thought as we start our new school years. I hope everyone has had a good start to their year.

I wish you all a peaceful week and blessings.

But Don’t You Want To Go?

I have a wonderful daughter, she is the first born of the family.  Emily is someone who is so unique, she is like a tapestry of wonderful.  She can tell you some breaking news, followed by something about eating organically then find you some talking citrus fruit on the internet.  She is full of love, for us, for life and especially for her siblings…she is like the Elizabeth whisperer.

Something else she possesses is a sincere wish to see the world, to visit places, and to help people.  To see the world, to learn, to live.  Emily is on her way to becoming a doctor and as such would like to combine travel and a desire to help others in need.

We have had quite a few conversations about traveling the world.  It usually involves me saying something like “Oh, that sounds interesting” when what I am thinking is “WOW, that is really a huge undertaking”  But then one night after another conversation about this topic, it really dawned on me why ….why I always felt so definitely about the prospect of traveling, sightseeing or visiting new places that I really know nothing about….why the very thought of attempting the above can at times make me feel nervous and sort of panicked at the same time…why talking about the new big things to try can at  times make me feel instantly tired.

And the reason is….I am 17 years into a journey with a daughter who has challenged me and our family in so many ways.  Ways that only those with similar stories and lives can truly understand.  Elizabeth and her disorders of SPD and dyspraxia have changed me from the person I was to the person I am now.

I have friends who not only attempted but had fun, at Walt Disney World with children ages six, five and one years old….all I could think about was when Elizabeth was their age, what would I have done?  The following is the actual order of my thoughts

1. OMG, I want to lie down!

2. I cannot image there would be much she would like

3. I CAN imagine all the sensory things she would HATE

4.How do you wait in line for all that time?…Elizabeth would be screaming.

5.THere would be NO way I could make this work for our other children and keep Elizabeth okay.

6.Can I go lie down?

Yes, I believe my conditioning came quite early…Isn’t it true? We, as parents of the special children know that we have a totally different line of thinking than the average parents do?  That things taken for granted by other are seen as challenges to us?  That successes. so quite often passed by, become celebrated events for us?.  I think that in finding and helping our children we have learned a certain way of thinking, of analyzing and acting.  Our children have help to shape our choices, even if those choices do not directly affect them.

As a child I was quite the tomboy and daredevil ( something most people who know me now  find hard to believe), so much so that each summer I would have one near to death fall of my bike/tree/patio each summer.  The kind of fall that has your parents enter into the “angry/scared zone”. Where they are yelling at you for falling at the same time as they are hugging you for still being alive and somehow also assessing you for just how bad you hurt yourself….So knowing this is how I used to be, I know that that spirit is still there.  I can feel myself wanting to try something or go somewhere or do something but then I enter the “pragmatic zone”

The “pragmatic zone” is the one that has been shaped by my life, the one that knows what is truly possible now, what we will be working on accomplishing in the future I love when Elizabeth asks or wants to try something new, and with that in mind, we will always try to help her succeed. and what is under the category of ” things that any parent who wants to be alive for her children should not do” The last category, in my opinion, includes things like freefall jumps off buildings…followed by your immediate arrest upon landing to fire eating…well you get the idea.  Anyway, I know that on this journey with Elizabeth, I have learned so much, changed so much and have an appreciation for the little things in life. so much more that others and those things are the gifts of Elizabeth,

But if I must be truthful, there has been collateral damage as well.  Never will I simply “Do: something with out thinking of the How, Where, When and Why…Never will I assume things are in order for Elizabeth…we will always need to be aware and alert,  Never will I completely let my guard down…I will always be somewhat waiting for the next situation/issue to focus on.  Never will I feel I can respond  “Yes, I would love to do that” without thinking about Elizabeth and her needs  Maybe I am wrong to feel this way, maybe I am not..but each of us who are raising these special, beautiful children know what I am saying.

I am staring at Elizabeth right now.  She is laughing with her sister.  Her blues eyes are sparkling clear and happy.  She loves life…she is worth it all.

But now I know, when Emily asks about my wishes to see the world and travel.  I know why my answers are what they are.  I am really at a place where I am content with that.  Only God knows if one day all those things will be possible  but for right  now I need to leave the far and wide traveling and helping and even free falling to others…

I wish you all a peaceful week and the best of days starting our new school years.

Summertime, Summertime, Summertime

This is my first post in a while due to the recent death of my beloved Dad and then following immediately on its heels was the start of summer.  Wow, it was quite the emotional and exhausting Spring.

I think I am just getting my “sea-legs” for Summer.   We started the summer with a biking camp for Elizabeth.  It was from the “iCan Shine” company.  That was five days of watching Elizabeth go round and round in a gym on a special bike.  The last day was GREAT, she went outside on her own bike and RODE IT.  I was watching her circle the gym for an hour and 15 minutes each day thinking so many things.  Perhaps you can relate?

1. I AM SO PROUD OF HER –  I think this so often, but then once in a while I REALLY think it and this was one of those times.  Imagine having to work so hard each day for all the things you want to do and still smiling and laughing.  Elizabeth is a very pleasant and warm young lady.  I am not so sure, I could be that person if I had to face all she does each day.

2. I WANT THE WORLD FOR HER-  Ever since Elizabeth was a young child, I hoped the world would open up for her, that she would have all the opportunities open to her, that she could follow her interests  and be given every chance possible.  Our children work so hard at just plain life, that to be denied any opportunity would be heartbreaking.

3. I WANT THE WORLD TO UNDERSTAND HER-  After having advocated for Elizabeth for so long, I truly want her disorders to be understood and therefore SHE would be understood  I do not mind having to explain how Elizabeth “works” to any and all who ask or are going to work with her, but to have them know SOMETHING about her disorders would be fantastic.  Just think how nice that would feel to go into a meeting/classroom and be met with questions about how your child shows signs of the disorder as opposed to ” I am sorry, but WHAT does you child have?”

4. I PRAY FOR PATIENCE AND CLARITY OF THOUGHT-  There are times when I think, “We have been at this marathon for over 16 years”  I know I want the best for her but like all parents of special needs children know, patience can wear thin.  I pray for the clarity to know when I need a break, a moment, a prayer.  I pray I can close my mouth when I want to correct, I pray I can open it when I want to compliment and I pray I know when those times are.

5.  I LOVE THIS CHILD SO MUCH- There she was, smiling on that bike, helmet on, squishing down that mass of curls and she was happy.  I would move any mountain for her….I believe in this child.  Period.  And as she was peddling away on this bike outside, I look up in the sky to see the beautiful eagle soaring above us.  The same eagle that has been above us since my Dad died.  We see if often and regularly.  I feel it is my Dad telling us he is okay and that he is with us.  My Dad had a very special place in his heart for Elizabeth.  He called her his “penny from heaven”  She remembers this with a smile.

So I looked up in the sky to see this eagle….I was happy to see it there.   “See Dad” I thought.  “She’s doing pretty well, help us keep and eye on her”

We ended camp that day, and began the next part of summer.  I am happy to say Elizabeth is enjoying the relaxed pace of summer and is laughing and happy,.

I am getting there…..I know we have an amazing guardian angel to watch over us.

Wishing you all a peaceful week.