Thursday, September 15, 2011

Crossroads kind of suck ...

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crossroadsplural of cross·roads (Noun)
1. An intersection of two or more roads.
2. A point at which a crucial decision must be made that will have far-reaching consequences: "we stand again at a historic crossroads".

Seems like we are at such a place, a crossroads of sorts, with Miss Zoey. Seems like we have been at this juncture before. Many times before in fact, and for various reasons and some of those reasons, life and death choices. We are hardly new to this scenario  but I have to tell you, we have grown weary of it. Tiring and taxing but I suspect, we should brace ourselves for these types of decisions, as I am certain, there will be innumerous decisions such as these, in the years to come.

So, it looks like Zoey's Physical Therapist, is having a difficult time writing goals for our girl and if you know anything about services for our children and continuing services for our children, when writing those goals, they, the therapists, need to justify them and our children, they need to make strides towards meeting them. No strides, equals no services. Which equals, no good. Zoey's therapist, has told me that she can no longer justify writing a goal for standing and walking for Zoey. Can you hear my heart breaking as I type that? Just ever so slightly breaking. Because it is. And when she told me that and told me that she didn't think Zoey was "cognitively" ready to walk, I cried and then I was pissed that I cried. But hearing that was tough. On my heart. Super tough on my usually super tough heart.

Zoey's therapist doesn't think she will walk. I can see it in her eyes. I can hear it in her voice when she dances around my questions. We stand at a crossroads and our decision, as her parents, will potentially have far reaching consequences. As it stands now, when we talk about her wheelchair, and I mention to her therapist that for a child who is a hemiplegic, to propel that thing forward, only to go in circles, is frustrating and I get back from said therapist, "well, it is her circle", well I really want to blurt out a litany of swear words. Which I did and do, when I repeat that story. I'll keep it G here for now. But seriously, how many people go about this world, going in circles? I guess I am suppose to be grateful that my child, as severely delayed in all areas that she is, at least goes in circles, right? Nope. Not going to be grateful. So it looks as if, to keep these services, we need to write the goal for Zoey to use a powerchair. Which mind you we have worked with. Which I must tell you, was not pretty and in many ways a bit sad for me. Watching her struggle. Again. Also, my stubborn and quite frankly lazy little Down syndrome girl, is definitely going to dig that powerchair if she does gets the hang of it. It won't require her to work and thus, in my eyes, I have just sealed the deal, to have my daughter, in a chair, for the rest of her life.

Studies say that a child with Cerebral Palsy, who is not walking by 5, stands very little chance of ever walking. Zoey is 4 1/2. And you should see my teeny-tiny, 23 pound child's, itty-bitty, spindly legs. How do we strengthen them? How will those legs ever support her body? She has zero balance and only protective reflexes on her right side. I get that my child had a major stroke. A Middle Cerebral Artery infarct that blew out half of the right hemisphere of her tiny brain. One look at her brain scan and I know what my child it up against. I have no idea in this world how walking will be mastered. I don't know why it is, but accepting that she will never walk is so difficult for me right now. I guess it is because I have surrendered to so much over the last almost 5 years with her and this, this is just another one. Surrendering seems a bit like giving up sometimes.

Caitlin and I were talking this afternoon after I read something about a child with Down syndrome who is a year younger than Zoey. An accomplishment that I rejoiced in for them but felt a smack of reality to me. Something that made me realize the gap is widening. The safe place of having a baby with multiple delays, a toddler, with multiple delays, is becoming a more and more difficult place to hide. The gap is widening and now, now I just need to find a way to not get swallowed alive by it.

38 comments:

Elizabeth said...

My heart aches and breaks for you. If it's any comfort at all, the five-year mark is a hideous mark/milestone for many of us. I remember distinctly the year leading up to it and the year itself. I don't think it's entirely rational, either. I think those milestones are sort of hard-wired into us through our culture. While I don't want to contradict your PT, and I understand the age-old dilemma of mothering with denial/acceptance, my first impulse is to think "POO." About the not-walking. I think: We shall see.

Kristin said...

Oh Heather, my heart breaks for you. Don't let anyone take away your hopes and dreams.

Victoria Strong said...

Oh Heather. My heart is breaking hearing your heart break. I am so sorry. There is such a balance, a tight rope we must walk as special needs parents -- push everyone else to believe in our child the way we do while also personally accepting levels of possibility. It is different for all of us -- that level of possibility, but as parents we know in our gut what we must push for. Trust in your inner voice to know what next steps to take for Zoey. Fight like hell or find peace. And whatever it is we will be right beside you and offering many, many hugs along the way. Sending so much love to you all.

Stephanie said...

It's OK sweetie. Meltdown now. Then come back to it.

You are in just about the same place we were when Christopher was the same age. Actaully, the difference is that Zoey can sit MUCH better than Christopher does even now! We were told by his PT at the time that if he didn't get it "soon" they would just "tie him in a chair" for school. Um....no.


So, here is my advice from our experience: Let them write the goals for using her power wheelchair. However, make sure they include exercizes, etc to keep her legs limber, straighten them, etc. Continue to ask for AFO's for her. Just play it off that you want to keep her limber and the supports help to keep her feet under control.

You might have to subscribe to the Penguin's School of Therapy for awhile : "Smile and wave Boys, just smile and wave." ;P

We were always told that C would never walk either. He still isn't really, but we were never even offered the chance to get him into a gait trainer, etc.

The change came last year when I made the point that we are moving to a tri-level. Someday, I am not going to be able to haul him up and down those stairs. He needs to be able to at least help me transfer him, or be able to crawl up the stairs. It has snowballed from there.

Christopher will be 8 in December (I can't believe that!). He still doesn't stand on his own, but the potential is there.

Baby steps. I KNOW she will be able to do it! :) She will just do it in her own time.

Sending you guys lots of love!!!! Call me if you need anything.

Steph and Christopher

stephanie said...

Just let off my litany of swears!

You have 60% lung power, and you run!
Zoe still has you beat with two legs and two good lungs! If she's like her mama... screw that stat that kids said with CP not walking by 5 probably won't...


Love you!

Karol said...

I hear you and have many thoughts. I'll try to get an email off later today, if I get a chance.

Jamie said...

My Madie will be 5 next month..still no walking or standing or trying to pull herself up up...If I loose my hope for her I loose myself..Your PT was jerk for saying that to you...I know how ya feel...Lots of Hugs.

The VW's said...

Look at the quote you have in the header of your blog.....you are living with a miracle! Zoey is a miracle, despite what her future might hold. Look at all she has conquered thus far! You, as her momma, have been given such a gift in her! She may never walk.....but she has done more than expected....and who knows what the future holds for her?!

One thing I know, is that God holds the future, and He has shown all of us that He has a great purpose for Zoey!

I understand the heartache that you have.....I am walking this road right along with you, with Gavin. Actually, I would love it if Gavin could do half of what your sweet Zoey can do! I have struggled a ton with the future, concerning Gavin.....but I have finally accepted God's will for his life. I can't change things, so I have to just accept this lot in life. Now that I've accepted it, I am truly enjoying Gavin for ALL that he is! I am one blessed Momma....and so are you! Our special angels are miracles....and we have a bright future with them, and God, leading our way!

Love and Big Hugs sweet friend!

The Annessa Family said...

Nothing easy about it, and no words could bring you comfort. However - don't give up. Even if the goal is for her to use a power chair...then she will be the best dang power chair using little lady out there. And that doesn't mean you can't work on standing at home.

If you think you need a change in therapists though, don't be afraid to ask. I worked with one for a kiddo who refused to do anything with his legs because SHE felt he couldn't walk. We requested a new PT and she believed in him. And, he may not be walking (yet) but he's much closer than if we would have just gone with the first therapists beliefs.

Love to you,


Brooke
www.TheAnnessaFamily.blogspot.com

Brooke
www.TheAnnessaFamily.blogspot.com

Kristen's mom said...

"She is an expert teacher on living each day and each moment in the present. Though her strides thus far have already been numerous, she undoubtedly has much more to share with this world."

Those were actually your words from a post you wrote some 3 years ago.

I know those words still hold true.
I have many stories I still need to share concerning Kristen,
one in particular concerning her will to live. I can't get into the details here, but I know without a doubt that she was given another 20 years here on this earth, because that is what she wanted. She was ever so stubborn and always wanted things her way. I thank God every day for those extra 20 years.

You, better than any of us know that our children
"serves as the captain of a ship on uncertain seas."
They have much more to do with things than we think they do.

One more thing I found from a few years ago concerning a certain marking on one of your feet,
"A reminder of peace given to a restless body and the peace I still so often yearn for but perhaps lies before me in the not so distant future."
Today I pray that you will find the peace that you so often yearn for.

Becca said...

Oh, Heather, my tears are flowing for you and your beautiful little wonder-girl. Keep the unhappy possibility in the back of your mind, but *don't* give up. Maybe it won't happen, and I guess it's a good thing to prepare for, but that amazing child has surprised people in so many other ways before, that anything is still possible. I wish I could be there to give you both a hug right now.

Lacey said...

You know, it kind of makes me angry that her physical therapists say that. I've seen miss Zoey, and I believe that she will someday walk. She has moved in the gait trainer, and that, my friend, would be a great thing for her to practice in at school and in therapy. But just to jump to an electric wheelchair for a 4 year old?
Sorry, I'm more like you, I get angry. And I know it sucks because we go through the same thing. If he doesn't make ANY progress, than they can't justify coming out anymore. We've had to make up a few things to keep them coming. And ours was, most kids that don't sit up by 2, won't ever sit up. Jax is nearing 6, and can't sit up!
Maybe I just have more faith in my sweet girl, and I also have some good ideas for therapies for those legs. We'll have to talk soon! Its been far too long anyway!

Melissa said...

My heart hurts for you. Hearing those words. Ugh. You have great instincts for what Zoey needs, and I know you will do whatever it takes. New therapist, new chair, whatever. Still doesn't make it any easier though I'm sure.

colleen said...

As a pediatric nurse practitioner, I am confused by the fact that one member of the health care team has independently made a decision that should typically be made after consultation with Zoey's whole team. Zoey's PT's expertise is not in evaluating the cognitive potential of a child with Zoey's diagnoses. You have always indicated that your pediatrician has a great deal of experience with special needs kids and is smart enough not to fall into the notoriously dangerous territory of predicting outcomes in children. Perhaps you could make an appointment with him and bring up all of your very legitimate concerns should you follow Zoey's PT's advice and perhaps he will document his opinion in a letter should it differ from your PT's (which may help her with the more objective problems she faces in writing goals for the "state"). My nephew just started Med school -they are being trained to work in groups (including on tests) to find the answers to questions, as that has been shown to be the most effective way to come up with the "best" answer. This crossroad merits a group consensus of all the experts who know and care about Zoey. And should they happen to disagree, tell them to get their "letter writing pens ready" which may help your PT with her state issue.

Salinas family said...

I know your PT is a professional, but I'm sorry - NO ONE can accurately say what our kids will and won't be able to do!!! And this PT person needs to be replaced with someone who doesn't think in limits, who instead, works tirelessly to find and try new ideas to help Zoey progress! Princess Zoey is amazing and she will continue to amaze and inspire all of us!
Sending much love,
Karen
Logan UT

Anna said...

I jusr cant and wont accept it. I know it could be a possibility but I just dont want to hear it. For you or Miss Zoey. I know that the gap seems to be widening, I too have these spurts of anger because our little one wasnt even given the chances she needed until we came along. She is so delayed and doesnt fit into the DS mold. I wish there was something we could all say or do to fix it or make it feel better. Keep dreaming Heather! Hugs.

Reagan Leigh said...

Don't even get me started about that PT! I can't believe the nerve of this woman! Does she realize that Zoey has only been getting PT for a year or two now?!?!? I mean, if they had started her in PT since her first diagnosis, maybe, just maybe I'd be a little discouraged. But come on, she's only been getting it for a short while! And the 5 yr mark. Zoey is her own individual. Why should she have to fit into their timeline?!?! I mean, how many other kids do they know that have been though all of the things Zoey has?? NONE, I'm sure. Don't be discouraged. Go out and get your girl a new PT that actually believes in her and kick this one to the curb!

Anonymous said...

Heather - I hope you received my call today on your cell. But following all these comments from your whole family of supporters one line came through to me - Do not give up on Zoey's abilities, set up an appointment with your wonderful children's physician you so strongly relie on and definitely request ANOTHER PHYSICAL THERAPIST. THIS ONE WAS WAY OUT OF LINE.. (Yes, I'm shouting)! sorry :)

Aunt Bluebelle/Loraine

PS: Colleen's words were right on..
Wouldn't you just love to have her in your medical group for Zoey Grace awesome!

ANewKindOfPerfect said...

Oh sweet friend ... I can feel the pain in this post and it hits me straight in the heart. Emily is almost 8, and nowhere near walking. She can't even bear her own weight on her feet anymore, when you hold her up. I was always the told the same statistic about walking by 5. BUT - I know two kids who walked way later. One girl in Emily's class at school didn't take her own steps until she was 12!! So it CAN happen. Do not let this PT tell you the future. No one can do that! I agree with the others that you need a new set of PT eyes working with her.

Justine said...

Uggghh! I'm so sorry that you are going through this. I am definitely no expert AT ALL, but it seems to me that for a child with CP _and_ DS the "won't likely ever walk" predictor age would be later than for kids with just CP. For goodness sake, I know kids with DS who don't have CP who didn't walk until almost 5.

Praying for your decisions.

Cammie Heflin said...

I know we have talked about this and it still breaks my heart. Just so you know, I worked with a child with an unspecified disability that is 5 and 1/2 and is in a chair. She can barely sit up and last week she decided that she would start bearing weight and is standing with support!!! We will never give up on our Zoey Grace!

Joyce said...

Oh come on. Seriously, what a way to earn a living. Telling others their four year old will never walk so they can write a reachable goal. Really? Is that how the game is being played these days. Sad commentary. Fire the therapist and move on to one with a can-do attitude. (after a self indulging pity party which you so deserve after being subjected to that bs)

Laura Gilmour said...

I am not a medical expert, but know a little about brain anatomy from my psychology degree. A right hemisphere injury would explain why Zoey has fairly good receptive language skills, but struggles with simple motor tasks such as learning to operate a power chair. Right hemisphere dysfunction often results in visual/spatial and perceptual deficits. In addition to Asperger's Syndrome, I have Non-verbal learning disability and although my challeges are different than Zoey's, many motor tasks had to be verbalized/broken down into steps for me. For instance, I had to be told to swing my arms when running or to alternate feet when skipping. I wonder if Zoey going in circles has to do with difficulty orientating herself in space. On a much smaller scale, I struggle with some of those issues. I am unable to drive a car and I have trouble crossing intersections. I also get lost really eaisly, even in familiar places if it is near dusk. In order to teach someone with peceptual difficulties to operate a moving object other than their own body, it will have to be broken into very small steps and each step practiced one at a time. The same will have to be done with any motor tasks she learns (e.g. in a few years if she is ready to walk, learning to hold a pencil etc.). Physically moving her body in the positions (e.g. directing her hand on the joystick) may also help some. Using her chair, using her gait trainer, and hopefully eventually walking, will all be good oppertunities for Zoey to learn navigational skills which are so hard for those with right hemisphere disabilities. Finally, don't let experts use spatial/perceptual abilities as a measure of Zoey's global intelligence. As a child with a brain injury (even without DS), her abilities will be greatly scattered with some close to normal and others severely delayed. Full scale IQs mean very little when there is such discrepancy between abilities (better to look at individual areas).

Claudia said...

I read this post this morning. And then, while driving to Cologne with the Husband, I was thinking about it again and again. Now, here`s my output:
I don`t believe the PT. I´ve heard so many dr. opinions and everything, and they weren´t right all the time. Sometimes totally not expected things happened - some good, some bad. They just don`t know what is going to happen. They just tell their opinion - but that must not be what it turns out to be in the long run. Not more, not less. Zoey will find her way, and I don`t know why - but I do see her walk. Someday. She is just taking her own time. Love to you, my friend.

Shelly Turpin said...

I am so sorry. Hugs and tears from here. Deep down do you think she is right? I keep firing people, doctors mostly, who don't believe in my Bell. I keep taking things into my own hands and saying, Yes, she will. She may never breathe without a machine. BUT by golly she is going to walk, because I believe she can and she wants to. Listen to your heart. You know her so much better than anyone with any degree. If the answer is no, we will all cry with you for that loss, but we will all love your strong and amazing girl the same, without or without a power chair. Sending love and a million hugs.

Peter Olson said...

Zoey is an amazing person.
I believe that if she wanted to walk and she would.

Statistics are only numbers.

She may appear to be going in circles, but what if she is just having fun?

And imagine how many hurdles she has already cleared in such a short time.

You are doing a fantastic job with her.
Please don't get discouraged and keep up the great work! We are hoping and praying for the best.

connie said...

OK, totally unsolicited, but get a new therapist. Preferably one who is blissfully Pollyanna-ish, and thinks there is no limit to what Zoey can do. I don't know Zoey personally, but I see a girl who has always surprised people. So why would anyone imagine she could predict a single thing about her or about what God intends to do with her? And long ago I grew tired of the way medical-type people worry about giving parents "false hope," so they proceed to speak as if there is no hope, and right around our kids! Screw her. (In a completely nice way, of course.) :)

Anonymous said...

Have faith - everything so far has been on Zoey's timeline - not on a medical timeline. She has made such wonderful strides in her progress so far - with everything she's been through, look how far she has come!. She just might surprise you again one of these days! Have faith.

Robyn from Otisco Lake.

PS - Mark I am sooo sorry we didn't get to see you and the boys when you were here. A week is just tooooo short a time!

Stop FASD Today! Ask me How... said...

Fight back, Friend. Zoey will walk. If she has half the perseverance of her mama, she WILL walk.

Dria said...

As others have said, it is not about LIMITS. It is about what she can and will one day do. As parents, we have to and want to put our trust in the professionals that surround us, but we have to try to manage that fine line of trusting them but also making sure they are fully supporting our children by endlessly encouraging and BELIEVING in them. Trust your mommy instincts. You will always know what is best and your little sweetheart will be just fine!

Ruby's Mom said...

I love you! I have no wise words or advice to give,just know I love you and your sweet Zoey.

SECRET PEPPER PERSON: said...

The Teenager should not walk because of her substantial hypoplasia of the cerebellum and CP. She began walking at 5. She began walking well at 6 or 7. She now runs and rides an adaptive bike. She began writing at 13. I've learned from the Teenager that we really can't set limits on the human spirit. Stroke or no stroke. CP or no CP. Her IQ is 46 yet she reads on a 3rd grade level. Ten years in book one of Hooked On Phonics paid off. Now she reads for her own enjoyment. Never say never. I've seen too many miracles with my kids and my clients to not be a believer in the human spirit and the mama lions that nurture the little ones...Unrealistic. Who gives a crap? And who is to say what the future holds? No one knows that. Only our Creator and he has good and perfect plans for Zoe...and The Teenager....and the children he loves so dearly.

Michelle said...

I'm not sure how I arrived here, but I'm glad I did. I can identify with your post on your beautiful girl, only for us it is speech. I have felt the same things in reference to Lillian's speech therapist. I cried as I read your words about your heart breaking. I wish there were words I could say...thank you for sharing your heart.

Bea Braun said...

Heather your PT is taking the easy way out and the fact that she doesn't believe in Zoey is completely unacceptable. Since when do we limit a child based on the need to write goals???? You're stuck with what you get at the school, but check into a PT with you medical insurance. You need a PT who can think outside the box and who is eternally optimistic. Zoey is just way too amazing to limit in any way.

Anonymous said...

I just stumbled upon your blog through a friend's blog (Secret Pepper Person). I am a speech therapist and I agree with many of the other comments that maybe it is time to look for a new therapist. I think Collen's comment are dead on. I just wanted to offer a different perspective. Sometimes I work with children who are very delayed with their speech. Often when I suggest to parents about working with alternative communication devices, I am met with great resistance. Parents are always afraid this will keep the child from talking. I assure them we will still work on trying to develop verbal communication but that each child has a right to communicate his or hers wants, needs, and feelings today. Not months from now or years but today. When parents see how quickly an alternative device can begin to allow their child to express themselves they are thrilled! I have thrown the idea of "window of opportunity" out the window. I was taught that in college but the children in my life did not take that course. My nephew with CP started talking at 11! Way past when the "window" should have been closed and boarded up. I am sharing all this so that you might be able to look at the use of a wheelchair differently. If the chair allows her to be more independent and mobile today isn't that wonderful!!! Maybe with creative positioning Zoey can use her vision to the best of her ability. Never give up on greater goals but give her the chance to fly today even if it involves lots of circles. Would Zoey feel independent and proud of herself? If the answer is yes then maybe it is worth considering. I hope my thoughts help and in no way offend you. I am sure you always have your daughter's best interest at heart when you make decisions on her behalf. God bless.
Mrs. M

Scrappy quilter said...

Everyone has said it all. All I want to add is prayer and lots of hugs. Zoey is going to do what Zoey is going to do just has she has for the 4 1/2 years. Don't let anyone take that away from you. Hugs and love

Anonymous said...

Hi,

I found your blog by accident, have you ever heard of Patterning? its also known as the dolman-delcato method? google it, it may well be useful for Zoey. I live in england and work with children with Autism, professionals should never give up on a child, we need to set the bar high for our special children to help them meet their potential.

much love
Anna

Cole said...

I'm glad Elizabeth said poo first. I hesitated over my response for the same reason she gave. That said, my older sister, Michelle has profound mr, her cognitive capacity is about 6 mos. She live at home till she was 5. Then I was born and she was home for another year. My mom had to make an awful choice. No dr would rx pt. She was 5 and didn't walk. I'm grateful to her institution for this, they did give her pt. She was 7 when she first walked. Not walking at 5 does not mean it isn't going to happen. I don't know if it will, but it also isn't a reason to not work towards it. She can have 2 goals to work for.
Abby,s pt sucked. He told me she wouldn't crawl and told the other therapists on her team this. What it really meant was he wasn't working towards it. Her failure to get there on his timeline disappointed him. It pissed me off. That was about him, not her. He was burnt out and it was affecting his ability to be effective with her. We now have a new pt.

If that pt can't see how to get zoey there, I would suggest getting or trying a second opinion. If it's not hurting her to try, don't let their inability hurt you too.