Saturday, August 10, 2013

Putting Things Into Perspective!!

I'm not sure if this is going to be a popular post, but then again I have always promised to be honest and to share the good, bad and ugly with those who choose to read about my journey with Sam.  And those last four words are what is really important "my journey with Sam".  I write about my experience, my child, and my ever changing perceptions of raising a child with multiple special needs.

When Sam was first born and we received the diagnosis of Down syndrome I did my research and read the books which sort of depressed me and then I moved on to blogs or at that time emails, stories and sites that talked about all that a child with Down syndrome was capable of...this diagnosis was not the end of the world.  I became empowered and when I found NACD I found a mentor Jenny Marrs and her wonderful and amazing son John.  Now keep in mind that before I had found NACD Sam had suffered a brain injury from oxygen deprivation but reading about children with Down syndrome and brain injury that excelled with neurodevelopmental programs spurred me on.  I wanted that super child, I wanted that child that was going to beat the odds and everyone was going to be talking about.  I hated when someone would talk about Down syndrome and high functioning or low functioning...none of that mattered...what mattered was how you worked with them...right???  And to be that point in our journey...I needed that hope, that challenge, that push to get involved, to jump in, to really get to know Sam. I loved the interaction with my evaluator, honestly I valued their opinion over most of the other professionals we worked with because they were looking at Sam from head to toe, they were looking at our available resources and manpower and they were devising a plan for continued improvement with what we had to work with.

When our Wisconsin chapter first started I often helped with the evaluation process and I saw children come in with Down syndrome that were younger than Sam but they were talking, walking and meeting milestones so much sooner than Sam.  I was amazed by these children and loved to see them excel...but I was also envious of strides that seem to come to them so easily, language that flowed with little to no effort, fine motor and gross motor skills that I would die for.  The parents would talk to me about their concerns and worries and often I would think but are you seeing what they are doing, are you not amazed by the milestones met?  Hmmm...but wasn't I also guilty of this very same thing?  Focusing on what Sam couldn't do instead of what he could do and how far he has come?

It was around this time I had a meeting with our pastor and as we talked he shared with me that often times when he finishes a service he has mixed reactions from congregation members.  Some are happy and then some are thinking he is talking about them and they don't appreciate his reference or opinion on their situation even though he never had them in mind when he created the sermon.  It was one of those "light bulb moments" when things in your life start to swirl around and make sense.  I'm pretty sure that is when God steps in and starts to work on your life.  I had two perceptions that seemed to run around in my mind and I'll be honest I'm not proud of either one of them.  One was that all those super kids were just really super high functioning and life was easier for them, I could compare this to the difference a parent experiences when they have a typical child or a child with special needs.  Some kids are easy and some require a ton of work.  I was just beginning to touch on the real issue.

On the other side I often read on the listserve and even have expressed myself that some parents just don't work or put in enough time with their children and therefore they are low functioning.  They aren't trying diets or supplements or neurodevelopmental programs...they are expecting the therapists and schools to get their child where they need to be. Hmmm....was I walking in their shoes, did I know what challenges they faced in their lives???  I am also guilty of wanting the quick fix, the supplement or combination that will make life with Sam easier and allow him to excel beyond my dreams. I would read on the listserve how this supplement or that protocol is doing wonders for a child...and then I would try it with Sam....and his system would react negatively...and I again would feel like a failure.  Why is that child excelling and mine is not? I would become inwardly cynical wondering how a doctor, professional or parent is benefiting from pushing a protocol.  Like I said I'm not proud of my thoughts or reactions.

Now before you think I am trashing supplements, protocols, schools or neurodevelopmental programs I want to stop you and reassure you that is not my intention.  I admire those who are breaking down the barriers, doing the research, striving to make a positive change in the lives of people with Down syndrome. Without warrior parents we would not have our children at home,  in school or receiving proper medical care.  So where am I going with this??

I don't think I'm alone in the struggle of keeping a proper perspective on my journey with Sam.  Over the years I have changed my perspective of the super kids.  I delight in hearing the stories of those that have achieved and excelled but I think we all need to look at each and every one of our own children, look at where they started and how far they have come and realize that they are super kids in their own rite. Sam has faced more challenges than most, Down syndrome, brain injury, apraxia, aphasia, respiratory/immune system issues, bi-lateral hearing loss, hip dysplasia and Perthes and yet I can truly say he amazes me.  Are we reaching all the milestones that I thought we would when he was a baby?  I'm going to answer...not yet. I think we all have to continue to try, to hope, to move forward and even if your child isn't where you always thought they would get to, acknowledge where they are at, celebrate what they have accomplished and enjoy them for whom they have become.

As for low functioning, high a parent of an older child (almost 13) I believe we are all unique and our challenges are our own.  Sam is a super kid in my mind but can he do what the super kids we all hear about are able to do...not yet.  But from my own experience and what we have done with Sam I know that you can work super hard with a child, give them a wealth of experiences, supplement, obtain the best medical care possible and yet they will not meet up to someone's expectations. The important thing is that when you put your head on your pillow each night you know you did what was best for your child and your family. Also keep in mind that when something someone has said bothers you, is it because you have the same doubt, or is it because you needed that extra push or is it God's way of saying work harder and set your expectations higher?  There are lessons to be learned in both good times and bad.

Another part of this balancing act with Sam is embracing difference.  It is something both Ben and Sam taught me.  That just because someone looks different, learns different, talks is not wrong, it is just different.  There is a balancing act we do as parents of typical and children with special needs to help them reach their full potential. Over the years I have learned to concentrate on the strengths, work tenderly on the weaknesses but always let my children know they are amazing. Self esteem is the hardest thing to regain when it has been lost.

Lastly...give yourself a break.  None of us is perfect, we all have our quirks, imperfections and challenges...just like our kiddos.  Take care of yourself, love those perfectly imperfect children, see them through a fresh set of eyes and work on maintaining the balance of what we want with what we have.

Have a great weekend!!


  1. Beautiful piece about "maintaining the balance"! I appreciate your honesty and love all of your posts. Hugs to Sam -- feel like I know him :)

  2. Hugs back at you Rachel! Thanks for commenting!

  3. Thanks for sharing your thoughts! It will be well received. Personally, I live by this:

    1. Andi, I don't know how you do all you do but girl you are doing a great job. I have been praying for Oliver and I know that you got this!

  4. Sue, thanks for your honest sharing. I can say "ditto" to a lot of what you shared. It is definitely a journey, with ever-changing perceptions - as you said. Honestly, sometimes that part is frustrating to me (the ever-changing perceptions part). I guess that shows how stubborn I am. After so much research, work, etc. with my daughter, I want to feel that we are on the right track to get the best outcomes, only to have to step back and re-evaluate when things aren't going as "I" had planned. God knows I am a bit of a control freak, so I am thankful He gives me chances to step back and look at things again. :)

    1. Mary Beth, I agree with your thoughts on changing perception and when things don't go as we planned. I'm right there with ya on the control issues. Just ask Sam.

  5. Balance is an almost impossible goal! I was brought up catholic, so guilt grows like weed. It creeps when I am laying down and reading a book, when I hand my son the iPad so I can close my eyes and rest for a few minutes while he sits next to me, when the TV is on while I am working in the kitchen or even right now.
    My son also has multiples disabilities, hydrocephalus, autism, apraxia, SPD...he is only four and works 33 hours a week with all the the work that we do by ourselves at home, he has a full time job!
    Every time I hear "warrior parents" it gives me chills...I remember Jenny McCarthy, she is the one who likes to say that, if parents don't do everything available "pity" is what they want...sigh!
    High and low functioning questions send me into fighting mode, why does it matter? Do we ever get a break? We just came back from a family reunion, where my husband spent tons of time on the beach with my son, he said he loved it, specially because he felt like a normal father, he didn't stick out like a sore thumb!
    I love your blog and I am always learning from you, thank you for sharing your thoughts!


    1. Geovana, I know that guilt well. Unlike Jenny McCarthy I believe we have to do the best with what we have and what we are able to do. I worry about the young parents who may feel pressured to jump on this therapy bandwagon or that protocol with the hope that their child will achieve better than normal and the depression, devastation and financial hardship they may experience when their child doesn't. There are no guarantees...what works for one does not necessarily work for all. But we need to step away (like your husband did) and enjoy our children for the little people that they are. I don't ever want to lose sight of the wonderful little boy I have while I try to get him to a place that I want. Thanks for reading and commenting and good luck on your journey too!!

  6. Hi Sue
    Oh you just don't have any idea how far reaching sharing your heart goes! I am mom to a little boy adopted from Ethiopia... Levi... he has special needs but not in the physical area. He was abused in every way imaginable and trained to be like his abusers... movies, torture, satanic worship, role playing... I could go on and on... my point is that I totally understand how you feel! I am learning right along with him... sure I am trying therapy and supplements (to help with sleep and being calm). My goal, my desire is to, like you put it "The important thing is that when you put your head on your pillow each night you know you did what was best for your child and your family." and this as well "Over the years I have learned to concentrate on the strengths, work tenderly on the weaknesses but always let my children know they are amazing. Self esteem is the hardest thing to regain when it has been lost."
    Your sons are so wise to recognize the importance of not looking at the Outward appearance! Levi "looks" like a typical child..but he requires so much time, so much attention, so much supervision, so much instruction.... but I LOVE him.... and God placed him in our family and chose me to be his mom! I try to remember that on those days when I just want to close the door to my bedroom and come out 2 days later. =) I love to spend my time reading from people like you... honest about ALL of it!
    thanks for being a voice!

  7. Wonderful post! I have felt the same guilt that I was not doing enough, but some times you just need to let it go and love where you are and how far you have come. All the little things add up, I remember the first time he laughed at something funny, I loved it. Your blog is a wonderful I love every post.

  8. This is such a true, heartfelt post, which is so you Sue!
    I have struggled with the same issues with Noah, having Ds and apraxia... Watching other children younger than him (he will be 7 next month) speaking so easily, jumping, drawing.... Then I have to look at who Noah is and how much he has learned and progressed thru the years... That perspective is Huge, and you my friend have always been my source of strength and focus to remember who our boys are and to remain grateful for every milestone. Thank you for always being that source of strength and wisdom!

  9. Hello Sue! Jeanne