Monday, October 3, 2011

Outcomes: How to let go?

An interesting dialogue follows Friday's post about Jennifer Johannesen's book: No Ordinary Boy.

Jennifer notes that her pursuit "of optimal ways of being in the world" for son Owen (that pursuit that I believe every parent undertakes to give their child the richest life possible) was worthwhile and she has few regrets because of it.

But she notes that she could have approached intervention in a healthier way, one that didn't consume and exhaust her and lead to burn out.

"I would have had a healthier/happier time of things if I wasn't attached to outcomes," she says. "And if I'd felt a welcome place to voice the futility I was feeling."

I've found it hard to come to terms with the fact that I can't control the outcome of my son's life; that I may invest innumerable resources in therapy, equipment, life opportunities and one-on-one time but "results," if any, may not be related to the efforts I put in.

I've been told that I need to measure myself on what I put in (e.g. did I make the best possible effort to promote Ben's speech?) -- not what comes out (he never acquired speech).

That's not a common way of thinking in our culture.

A popular platitude is that if you work hard, anything is possible, and that we get what we deserve.

Therapy is increasingly goal-oriented (with our commitment to evidence-based care). For parents whose children don't meet the hoped-for goals, it can seem like a set up for failure.

Do you believe that it's possible to live in our culture and rehab system and not be devastated when our children don't make the progress we hope for?

I wonder how we can change our definition and understanding of rehab -- and our common concept of success -- so that it isn't so black and white, so that there's more room for grey?

How could rehab professionals counsel parents so that they don't fall into the trap of 'more therapy is better' when their child isn't making any meaningful progress?

And finally, how could rehab professionals better 'hear' parents like Jennifer, who says in her book: "I want to cringe, cry, yell when I think of my 30-something self. I worked so hard, and yet underneath it all I felt the futility...I could pick just one thing of the 50 and do only that one thing for 10 years and it would still never be done. It's all too much, and it will never be enough."

How can we, as parents, better speak up?

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25 comments:

as a rehab professional, i have come to think that parents have to come to this realization on their own. i try to give them permission to go there, to know that more therapy is not necessarily what leads their child and their family to a happier, healthier life, but sometimes they are not ready to hear it--and i haven't found i'm able to do much about that. it's hard to see, as a professional who cares very much about patient AND family outcomes in quality of life above all else. please keep saying this--i agree with you that parents need to both speak up and hear this from professionals and fellow parents.
:) liz the PT

"Do you believe that it's possible to live in our culture and rehab system and not be devastated when our children don't make the progress we hope for? "
No. Not for me anyway. I am not sure if this is 'cultural' or related to rehab. We all want the best for our children. Watching them struggle to do things so simple for other children is heartbreaking.
I speak up all the time. The professionals I work with don't always listen.
I think Liz above captures the perspective of the caring professional well.
Finding our peace is not easy for any of us involved with children with disabilities.

Having been around the therapy block these past nine years, I have encountered differing attitudes amongst both the professionals and the parents. Some therapists see no hope right away, and their efforts reflect this. Some keep harping on, "More OT! She needs more OT!", as if several more appts. per week would make the difference. Some parents burn out relatively early on therapy and the paucity of goals achieved, while others are consumed with trying anything and everything they come to hear of. We have stuck with just one SLP who is continuing to get results, but even here, if it became a frustrating drag to get ourselves to the appts., we would quit. Maybe revisit it after a time.

I like what @Liz said - it reflects what I believe as well. I think peace only comes after a significant amount of personal reflection, honesty and intention for growth or development. The craziness is in the pretending or wishing things were different or trying to control every aspect of therapy or thinking that the purpose of our lives is to fix our children. And it's work to shed the societal and familial origins of these things. And of course it's best when the reflection and maturity occurs on both sides of the child (therapist and parent).

I actually do believe it's possible to not be devastated - but the trick here is in getting rid of that slippery, deceptive word "hope", as in "the progress we hope for". Attachment and hope are the real devastations, not 'failure' to achieve.

I subscribe to few beliefs or belief systems, but I wholeheartedly agree with this Buddhist Truth: The origin of suffering is attachment.

@Louise I read through your post again, and notice this:

"I've found it hard to come to terms with the fact that I can't control the outcome of my son's life..."

I respectfully and a little cautiously ask: do you feel this way about your other children? I don't mean to single you out! I will be the first to say I gave far more time and energy to my child with disabilities than I did to my typically-developing child. And I looked for relatively MORE change as a result of my efforts.

So I wonder: why do we think kids with disabilities should come out the exact way we try to shape them, moreso than 'regular' kids? And why is there devastation when it doesn't work? Do we think that children with disabilities are more malleable and bendable to our will?

Last point: @moplans says it's heartbreaking to watch a child struggle to do what other children do easily. I hear this frequently and I'm not sure I agree.

I think this particular heartbreak is about the child not being like the others and has little to do with the child herself. In other words, the heartbreak (in this case) is in the eye of the beholder - again, a case of attachment to an outcome, or wishing things were different.

Hi Liz -- thanks for your response. I was one of the parents you mention -- who wasn't ready to "hear" that therapy was futile.

I get that it's something a parent has to come to in their own time, as a process.

But I wish at the start of therapy it was discussed as being an outcome -- and one that doesn't preclude a good life. I wish there was more openness about discussing it among parents and between parents and professionals.

For years, I was always able to find another therapist who was willing to give me a different opinion -- who would open the door on hope again.

I never wanted to feel that I didn't try everything. I can see how much time we wasted focusing our attention on something our son just couldn't do (and how negative it was for his self esteem). Perhaps if therapists had been more positive about alternate routes of communication -- e.g. sign language -- it would have helped.

But perhaps you're right that parents can only reach the conclusion themselves, no matter what input comes from outside.

Thoughts?

Thank you Moplans and Kate for sharing your experiences and insights!

Hi Jennifer -- Thanks for your messages.

I think the concept of hope is an interesting one. You are right. When you have hope, you wish for something that is different from the current state.

I think it would be almost impossible for parents to follow through on the grind of therapy if they didn't have hope. It is because therapists offer the hope of progress that parents undertake therapy.

I understand how being so tied to hope gets in the way of accepting things as they are and living life in the moment.

How can we strike a better balance?

I no longer have hope that my son will speak. But I have hopes that he will lead a rich life. Are these hopes destructive?

Without some kind of vision for the future, how would you take the steps to get there (be it in a more balanced way?)

Would love to hear more from you. Thanks! Louise

I had a therapist say once "Hope is scarcity." Took me years to understand what he meant! Here's my take: hope is wishing. Passive. It's a fanciful dream. And usually is focused on something beyond our control. Sure, have hopes - but it's likely to be devastating if you're invested in the hope or wish coming true.

You mention you hope Ben has a rich life - what does that mean exactly? Is there a way to articulate it more specifically? Perhaps if you can get specific it can move from the realm of hope to an actual plan.

Our only hope for sanity is to focus on what is within our control and let the results naturally lead us to the next step. Which may be a different path than we had hoped for.

Hi Jennifer -- It has come as quite a surprise to me recently to acknowledge that I did in fact believe (on some level) that I could control the outcome of Ben's life.

I think there are many reasons for this:

-a basic protectiveness that parents have for all of their children

-the illusion that we have control over things which we don't

-wanting to somehow take any sense of 'failure' away from him, and carry it myself, because in some ways it's easier to say I didn't do enough, than to say that his disabilities were simply too significant to 'overcome' (not that I believe in the notion of overcoming!)

I think I have similar illusions about my other children, but because they are so independent in contrast, I haven't had to look at this so closely with them.

However, my adopted daughter has struggled greatly in the last year, and that has brought in to focus more that each child is on their own path and as much as I would like to be able to 'fix' pain or make things easier, or come up with a 'solution,' I can't.

I guess I'm a bit of a control freak, so being able to step back is really difficult for me.

Another parent recently remarked that he had come to the conclusion that his son's future was 'out of his hands.' (this is a boy with significant disabilities). This really made me think, because at first it seemed somewhat of an extreme position to me. If we all believed this from the start, what parent would do therapy? Why bother starting?

However, I began to see the wisdom in this and how unrealistic my sense of control was/is.

I don't think any parent goes into therapy hoping to bend their child to their will. I think they go into it hoping to 'unlock' or 'enable' their child. They go into it with the best intentions, but sometimes they can get caught in the trap of more, more, more, at which point they are not 'enabling' their child if there is no functional gain.

In terms of heartbreak, I think parents feel that because they compare their child's life with their own, and feel that their child won't be able to do things that they found so rewarding. If a child is born with his/her disabilities, it's possible that that child doesn't feel any loss, but simply feels that his life and his way of being in the world is simply the way it's always been. His own 'norm.'

However, for kids who are able to verbalize their feelings, it's not uncommon for a young person with a disability to say they 'wish' they could do something they can't.

So while I agree that the bulk of the heartache rests on parents and is more about 'them' and what they may project onto their children and imagine their children are feeling, I don't think it's all about them.

Remember when you described the tears that you and Owen shed (only his visible) when the switch didn't work?

I'd love to hear more from you on this. Thanks!

Hi Jen -- What you wrote here made a lot of sense to me: "Our only hope for sanity is to focus on what is within our control and let the results naturally lead us to the next step. Which may be a different path than we had hoped for."

I've hired PLAN to help us with a network that is part of my "plan" to move towards a rich life for Ben.

My vision is based on what he articulated in a life plan day we held for him: he wants to have friends, he wants to have his own house (may not be possible) he wants to be a zookeeper or gamer (perhaps as a volunteer).

I want him to feel loved and understood and valued. I believe any avenue that will allow him to better express his thoughts will give him a richer life. But I realize that may not be attainable.

Hi again :)

You said: "So while I agree that the bulk of the heartache rests on parents and is more about 'them' and what they may project onto their children and imagine their children are feeling, I don't think it's all about them.

Remember when you described the tears that you and Owen shed (only his visible) when the switch didn't work?"

I remember it all too well! I think Owen's frustrations (and I can only guess) were because he was trying to do something I desperately wanted him to do, but couldn't. And I wanted him to do it because I'd invested so much time in it. I have doubts that he naturally and intuitively would have wanted to press the switch if I hadn't been gesturing so madly.

Also, I didn't mean to suggest that our purpose in therapies etc. is to bend our children to our will. But I do think it can be an expectation.
Why else would we be so distraught if we work so hard only to find that our child isn't responding as we hoped? Why is it a surprise, or devastating? What did we think was going to happen...? We deny a basic humanity in the other if we think that results should equal what we put in, as though we could mold another to suit our vision. Are we surprised when typically-developing children don't follow through on something we've taught or told them time and again? (Well, I suppose so :) but devastated? Self-blaming to the same degree?) I'm just noticing the differences in expectations and how much higher the stakes are.

There's an underlying assumption that we have failed our children if they remain 'less than' - which means we thought they were 'less than' in the first place. Clinicians have their own roles to play in all of this, but I think it's the work of the parent to come to terms with motivations and expectations.

Hi Everyone,

I spent a portion of last night and this morning reading these engaging comments; for, I truly belong, here, at BLOOM, amongst all of you.

However, as a result of my disability, trying to respond to each one would be futile, as I may, or may not, be finished in a week?

Hence, I'm going to do some preliminary writing to clairify my thoughts, as I am a writer, and ask Louise to run the post at a later date.

There is, nonetheless, one thing that I would love to share, with each of you, in the present moment:

The origin of suffering is not attachment in and of itself. For example, from your writings, one can see that an "attachment to your children" is responsible for love, compassion, reason, joy, understanding, wisdom, a willingness to bare whatever comes, kindness, and mercy.

Therefore, I argue, "The origin of suffering is an attchment to a single idea, vision, or outcome; an inability to see, appreciate, make sense, or be thankful for what you have gained.

Matt Kamaratakis

Jennifer, I just want to say that you are a breath of fresh air. Thank you for your insights. They are very well thought out and very well articulated. I think you make some very interesting points. I hope others see them as constructive rather than respond defensively. I think balance is a state that is different for each one of us and for each of the children we raise. I see it as having a bit of hope combined with a healthy dose of reality. There's nothing wrong with setting goals, whether they relate to therapy, school, the workplace, preparing a meal, working out at the gym, or whatever else. Setting goals is one way we organize our lives. If a goal is not reached, modify the goal or start again. It's not about philosophizing so much that one gets into a tailspin and perseverates about it to the point of sickness or despair. Dwelling too much, I think, only serves to take the focus away from what matters. Being loved, understood and valued is a basic human need. How each one of us and children define these things will vary based on views, feelings, experiences and the infuence that others have. I think it's important to give credit to children, no matter the degree of their disability, for knowing at some level, even if it can't be expressed in traditional forms of communication, what it means and feels like. I think therapy can be effective depending on the situation, the professionals involved, family, and other dynamics. Therapy is definitely not the panacea for everything one might see as 'wrong' or needs to be 'fixed' but when it involves the right professionals, for the appropriate amount of time, and includes carefully established goals that are monitored, reviewed and updated or revised when needed, progress can be made. Perhaps if there is a lack of progress, it is the result of the difficulty of letting go of control. Sometimes when control is lost, one reaction is to lower expectations and see a child as only having potential. This is where I think some parents fail their children. I think it's important not to dwell too much on what might have been or will not be but rather to focus on the possible and share what some might refer to as 'control'. I call it working together. I think the challenges we are faced with make us stronger as human beings and we should try to be as positive as possible and surround ourseleves with others who are positive and want to make a difference, whether it's via the community participation, school, home and even yes therapy that is well planned out.
An interesting discussion overall.

Hi Louise!

"But I wish at the start of therapy it was discussed as being an outcome -- and one that doesn't preclude a good life."

This is an excellent point, and one that I intend to keep in my mind and act on starting right now. I've done this, in the sort of "this is probably not going to be the magic bullet" conversation that I have with the more aggressive parents, but it can be said more than once. That said, I have had that conversation, sometimes multiple times, with parents, and I can tell they are not really registering what I am saying. The hardest conversations are the ones that go: "there might not BE a magic bullet for this particular thing." Of course that would be followed up with explaining how there are other ways of being and living, and that while those ways are very different from our cultural norms, they are still valuable and happy, when seen as just their own thing and not in comparison. It's a conversation I would consider carefully before I embarked upon it. Okay. Thinking aloud here. Moving on...

Yes, as you pointed out, if you continue to seek out other therapists, you will continue to get other answers. It's the same thing as asking four doctors their opinion on a certain thing--you will get four answers. If you ask enough people, you will get the answer you want. The only problem is it might not be true.

"I never wanted to feel that I didn't try everything."--Oh yes. Yes, yes. There isn't much to say about this. Of course this is a reaction.

How would you have responded if some therapist had said "but you don't have to try everything to be a good parent to this child"? I'm quite curious about this, actually. Anyone else care to respond to that as well as Louise??

I've used a similar phrase to try to assuage the...guilt? pressure?...that drives some parents, and while it seems to give them some relief and permission to just enjoy their child for awhile and do what is successful, inevitably the pressure creeps back up again. Maybe it just needs to be said again? What do you think?

Also, if presented by a truly motivated and positive therapist, would sign (or other aug comm) have been attractive enough to make you give up on vocal communication at the moment you were so focused on getting it?

I think the journey is a necessity, and parents should not beat themselves up for how they went/go about it. You were truly doing the very best you could with the information and experience you had. You can only move forward. (I'm trying to learn this myself!) My mother is a social worker, and she has given me mantras several times. I find them very helpful, especially in situations that will recur, to help keep me grounded in happiness and reality.

:) Liz

P.S. Thank you for the dialogue!!! I love it!

@Liz - great comments! I will take up your offer to respond to your question: "How would you have responded if some therapist had said "but you don't have to try everything to be a good parent to this child"?"

I probably did hear it but didn't listen. Parents know it in their heads - probably already did before anyone said it - but somehow it doesn't integrate.

I have felt for a long time that parent 'training' should include an ethics or philosophy class. Somewhere to bring higher debate and thought, that elevates the thinking out of the fear and panic and reaction.

Our care for our exceptionally vulnerable children is a responsibility of the highest order - to make these decisions in a vacuum, using the principles that served us in the 'regular' world, applying regular definitions to an irregular situation - all are bound to fail the child in the end.

It's all so hugely personal, and yet still a reflection of our collective humanity. Why do parents of children with disabilities (generally speaking) feel so driven and why do the children have to work so hard? Why did (do) so many of my parent-friends suffer from depression?

The 'system' presents us with many options. We have to learn how to be selective. I think the only way to do that is to back waaaay up, wonder at what we want to accomplish and what is driving us, and decide from there.

This isn't a casual suggestion - this is real work. Requires a maturity and confidence that many new parents don't have yet. Which brings me back to my suggestion of a philosophy class :)

Hi -- I like Jen's idea of a philosophy class -- but not just for parents, also for practicing therapists/docs and students where they have to look deeply at their motivations, values, biases and gain greater empathy for the journey parents on are.

Perhaps there would need to be 2 different groups -- one for parents and one for professionals.

I think a lot of the principles in narrative medicine could be applied --and my understanding where that is used is that they often separate the parents/families and professionals for best results (e.g. at Columbia they had oncology staff meet weekly for personal reflection/writing assignments related to their work and sharing)

Hi Jen -- Re Owen and the switch. Perhaps he didn't naturally want to push it and his motivation was strictly to make you happy.

But what about kids who can and do verbalize their own heartache because their disability prevents them from doing something -- I'm thinking of a young woman with Down syndrome who told me: "I hate Down syndrome!" Why? She wanted to be a CIT at camp with her peers but wasn't allowed to.

Are these struggles their own -- or projected onto them by their parents?

I think with the gamut of disability and individual human experience, we can't say that parents alone feel loss when their children aren't able to participate in life in the same way as their peers.

I agree that for many kids with more complex needs who were born with their disabilities, they may perceive their experience as simply the way life is.

I thought back to the question you asked about whether I feel I can control the outcome of my other kids. I believe that because of my experiences with Ben, I don't have any of the expectations for my other kids that I might have had otherwise.

I've been able to pretty much stay out of their school choices and I don't project what happiness or success will look like for them.

Without my experience with disability, I probably would have been more caught up in trying to move their development forward, control their education, ready them for a certain type of post-secondary education (just looking at how over-involved some of my peers are with their kids of a similar age).

I don't think any parent of a typical kid "works" with them in the way a parent of a child with disabilities does. My other kids learned by osmosis. I didn't need to "do" anything to see them bound forward in development. The stakes are so much higher with kids with disabilities because things that are effortless for typical kids require sustained and intensive and planned work on the part of the disabled child and parent. The parent becomes the therapist that they never wanted to be. Nobody would put that work in if they didn't think it would give their child opportunities -- thus the expectations that can be dashed.

I also think the rehab world is a microcosm of our larger society which is very much about continual self-improvement and never being enough the way you are.

I think the big question is how to find the balance?

When is enough enough? Ben just recently began writing even though we were told he never would. But he wouldn't have taken it up independently. It was because I took him to Kumon and the lady there went against what her superiors told her and took him on. Now he's as happy as a clam doing his Kumon homework with the other kids. You can see the difference in his confidence. He feels a sense of mastery.

When thinking about Kumon, a part of me thought -- you've missed the boat, he's 17 years old, why are you belabouring this?

Hi Liz -- Your question is an interesting one:

How would you have responded if some therapist had said "but you don't have to try everything to be a good parent to this child"? .

I remember early on a friend asking me what would have happened if I'd lived in some remote community and none of the therapies/resources were available -- would I have been any worse of a parent?

My answer was that I would have to move.

I think parents need to hear these messages over and over and over again, because the whole culture is screaming in the opposite direction (with 'anything is possible,' 'go for it' the latest magic bullet and success story about some child 'overcoming' disability).

I was speaking at a parent support group recently and a number of the younger parents were talking about how they were putting "everything" into their child now, in the hopes their lives would be easier in the future.

I talked about how I felt I'd missed out on so much with Ben because I was so consumed with therapy -- that I'd missed so many joyous moments because I had another agenda (by the way, sometimes therapists feed this by insisting that you chart or document absolutely every speech attempt or whatever it is you are trying to do on a daily basis -- or measure every morsel of food the kid gets, etc. -- so now not only are you making all these efforts, but you have to find the time to write them down so the therapist can judge how you're doing).

But I didn't feel anyone was listening. I explained that we had spent years and years and over $100,000 trying to get Ben to speak -- speech 4 times a week, travelling to the US for weeks at a time for intensive therapy etc -- and yet my son doesn't speak. I talked about how I wished I had that time back.

I know exactly what was going on in the other parents' minds: "But my child will be different."

We did try AAC but the devices were so archaic and cumbersome (and nothing like modern business technology in terms of being intuitive and making you want to use them) that we abandoned them.

We also tried sign, but it was hard for Ben because of his fine motor problems, so it took a long time before it was useful to him.

It's hard to let go of speech -- which is so highly prized in our society, in the same way that many parents hold on to "walking" even if it's not a functional way to get around for their child.

So the more you can weave/suggest/open the discussion that there may be a more balanced path that will be healthiest for child and parent, the better.

To clarify: I don't think I said that it's parents alone who feel loss... A child may indeed be suffering. But the parent is not feeling that per se - they can't be. They (we) are feeling their/our own helplessness. My point is that parents who feel guilt/pressure/stress would do well to look at their own reactions and wonder how they can move forward with the things that are indeed within their control. As, I think, should all people. In the case of a child feeling disappointment or loss - it's the work of any parent of any child to sort out what is theirs to take on and 'fix', and what must be accepted as part of the life's journey of the child.

@Louise I see the conflicts you are experiencing - perseverance led Ben to Kumon, which is proving to be beneficial. But the pressures of external stress can be overwhelming. So, you wonder, what is the right balance? I don't feel qualified to answer that. All I know is that there are boats missed, boats sunk, boats caught leading us to some reward or another... The pursuit of helping our children is something each of us has to come to terms with individually. I came to my own conclusions after a long fight and now look back without regret. But my path would of course not have suited everyone.

The stress of having to do it perfectly, or the right way, or fretting about taking a while to come to what works - and then feeling this crushing pressure when things don't go the way we wanted it to - all of that is self-induced. And somehow makes the journey of supporting the child all about us! A huge distraction and again, where attachment to outcomes causes our own suffering. Forces everywhere are pushing us ever harder and it's a choice whether we take it on or not.

----

You said "I don't think any parent of a typical kid "works" with them in the way a parent of a child with disabilities does. My other kids learned by osmosis. I didn't need to "do" anything to see them bound forward in development."

Not to be difficult on purpose, but I offer a challenging question: why do you need to see your children bound forward in development? It's stated here like it's a universal imperative. Is this not exactly the pressure we are speaking of?

When a son or daughter with complex special needs is included in their own life planning process but then, in the spirit of trying to sound realistic, any of the other planning members sabotage that young person's passions, hopes and dreams by saying it may not be possible, it's time to re-examine the reasons for using this approach. It seems that people should be more focussed on finding solutions to the obstacles that exist while respecting the individual's wishes.

The girl with Down Syndrome someone mentioned who wanted to be a CIT at camp with her peers should have been able to achieve her goal. If not at this camp, then another camp. What is the point of staying someone (even if there is a sense of comfort developed over the years as a result of being a camper) when because of her special needs she is not allowed to be a CIT like others?

If signing is difficult for a child to learn, because of fine motor difficulties, it would seem to make sense to involve an O.T. Again, it's about finding solutions, not making excuses or lowering expectations.

Regarding siblings, I would only comment that they are often the ones hurting and don't feel loved, because they see their parents time taken up so much by the child with special needs in the family. I believe it's important for parents to be sensitive and careful about making assumptions whether siblings learn things automatically and more easily, requiring less of their parent's attention, time and effort. Resentment is a strong emotion and many siblings -young and old alike -harbour resentment at the time and later on in life when they think about how their parents left them on their own, because the parents felt they were coping fine.

Philosophy class, that's an interesting idea. I wonder if a family class would be mainly composed of mothers or fathers, or would it be balanced?

Thanks everyone for their interesting postings

thanks for your replies!
:) liz

i like the idea of a class. we had one class in PT school that was an attempt to enter into philosophical discussions, but so much information is pushed at you in graduate school that i don't know how well it sank in.

I am a mom to a 19 year old, primarily non-verbal adult. I completely understand teh pressure to push for more speech therapy and even to the point that we pursued our own. What I founf through this advocacy is that there was technology that could help her that was not even being considered at her school. We petitioned the school, things got heated and in the end, she received the technology she needed. That was more than 10 years ago. She uses that technology every single day to communicate to those around her. This technology has become very common in our school district at this point, however, my daughter was the first to use it. We had many skeptics. I will say this though, we did come to a point where after several years we realized that all the speech therapy in the world was not going to help, so we learned to give up on some dreams and just help her be the very best at what she could be. I would wish that peace on every parent that struggles with are they doing enough. I feel like in many ways I have done more advocacy for my child than many students in a regular education classroom. It s a place I think we all come to on our on, in our own way. At least that is how it was for me. Jen Millar, RNC, MSN

Thanks Jen Millar for your comment and sharing your experience!

What type of technology/device does your daughter use? I would love to hear more about it.

Hi- My daughter Taylor uses a very simplified down Dynavox. There are many of these and some are very complex, but hers has only 6 choices at one time. It is what has seemed to work best for her, what I did love, was that we were able to get a regular education young girl to speak the words and so the voice sounds real and natural, as if my daughter was speaking. There are at leas 6 other children usingthem and the school district has paid for all of them. Thanks for asking - Jen