The Reasons Why We Need To Stay Alert

I am sitting in the waiting area of our CranioSacral therapist office while Elizabeth is getting her second treatment in three days.  As I sit here and hear Elizabeth crying about “things”  I am left feeling that same old sick stomach and having the thoughts “How did we get here again?”  “How after so many hours spent educating those who work with her,sending notes, communication forms, emails and even inserting myself into the school once a month…did we get here AGAIN?”  But perhaps before I say more, I need to give a little bit of backround information here.

This is Elizabeth’s sophomore year in high school.  She did great last year and really had no problems adjusting at all.  So with that in mind, I did the same things I did last year for this year.  I sent informational emails to ALL the teachers and support staff who would be working with or encountering her in the day.  I met with her intervention specialist before school started to discuss the summer and all the things we did with Elizabeth and to ONE more time go over who the year will work for her….all was in place….until it WASN”T!…..all was okay for a week, and then I started to see signs of some stress in Elizabeth but since all my daily communications with the school were positive, I attributed it to stress that went along with a new year and new schedules and some tiredness as her school started almost an hour earlier than last year.    I let this go until the second week of school and there were a few more signs of stress…some humming…some far of looks …some hiding her face as she walked in the school and some seriously LONG times to fall asleep.  So Elizabeth and I talked and I thought we handled well the things she was concerned about.  Again, all the information from the school was still positive.

Then came the day she started to asked me to pack her lunch for her.  She has not asked me to do this for her since the 5th grade.  and it came home untouched….again nothing from the school….So we talked again and then I heard it all…..

How hard the day was.

How horrible lunchtime was.

How much she hates her dyspraxia…..

How the work sent home is “baby work”…

Then the tears came….everyday for three days in a row,

It was like she just felt defeated and sad and …worthless….and it just about killed us.

For those who don’t know our story, these tearful, fearful parts of ELizabeth are few and far between.  She is generally the happiest child…so to see these tears and hear her words makes me…to be hones….incredibly afraid.

After this first conversation, I phoned the teacher, and made plans to meet.

When I got there I was greeted with a concerned face from the intervention specialist who is unbelievably kind and loving, and notes from her aide describing all the “behaviors” Elizabeth has been showing for a long time….  I shared that they were the same ones we had seen at home this past week or so.

Our conversation that followed broke my heart…. The day is NOT what we agreed would happen,…..so much needed fixed. and it will be,I offer this story out as fresh as it is in our life for many reasons.  Probably the biggest reason is that we as parents and caregivers need to be alert to any changes in our child’s moods or activities as they can signal problems.  We need to remember that no matter how much the school may like our children and really want to help them, it is important that they UNDERSTAND our child’s disorders.  The warning signs of problems, the ways they can help and the fact that we WANT to know of any changes in our childrens demeanors or moods.  I know that we have been on our journey for over 17 years and to have this happen reminds me once again we need to remain alert and stay aware.   The teacher said to me “But last year was such a good one, she never did things like this”  My response was ” She never did things like this because of the work we do at home and at the school to keep her world organized”  I truly think that the school and staff finally understand just how deeply dyspraxia and SPD can impact a child. I think until now, they did not.  They saw a pretty, happy and organized Elizabeth.  Now, sadly, they get it…. Could we have stopped this chain of events?  I think we could have had we known more…….Can we learn from this?  Absolutely.

John and I agreed that taking Elizabeth out of school for a few day and getting her system calmed down would be our first  step…..then we need to meet with the teachers, inservice them more deeply on dyspraxia and SPD and fix the wrongs in her day so that when she goes to school she can trust that her day will be what we say and she can enjoy life!

This is a blog post that finds us working quite hard for our daughter, but what is amazing in all this is that even though we have been at this for over 17 years,  when something like this happens you forget that you might be weary or overwhelmed and the only thing you can think about is how you will move any mountain to help your child.

Elizabeth…you are loved!

 

 

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.