Tuesday, January 4, 2011

The f-word for parents of kids with special needs

Today, I got an email that I couldn't stop thinking about. It was from a mom on an e-loop I'm part of; she's been lobbying on behalf of special needs families for years, and she invited us to attend a meeting happening next week. It's about policy plans for our state's Division of Developmental Disabilities. There will be a lot of talk about the Community Services Waiting List, which is what you have to be on in order to be eligible for housing for the disabled, as well as other support services.

The "f" word in my life is Max's future; it's not something I talk about a lot. On purpose. Looking that far ahead unsettles me. It's what I had to learn to stop doing when Max was a baby, because the more I kept trying to envision what his future might be like, the more anxious and depressed I'd get. And so for years, I've set my sights on the present of Max and what he is doing, rather than what he might do someday. It's been a good thing for both of us. A healthy thing.

I don't have my head buried in the sand. We are in the early stages of setting up a special needs trust for Max. But the thought of Max in a home for the disabled? It makes me cry. I am tearing up as I type this, and I've had to stop a couple of times. My mind goes to bad places when I think of it.

Max in need of a special home?

Max without me and Dave?

How could we do that to him?

Who would protect him and take care of him like we do?

No, he could never go to a home.

But what if it were the right thing for him? He'll need to be independent.

Would he be able to change his clothes himself or would there be someone to help him?

Would he be able to feed himself?

What kind of friends would he have?

What do those homes look like on the inside, anyway?

What kind of job would he get?

How could I not kiss him every day?

Would it be weird for me to visit every day?

And so on and so on. My mind spirals off into all sorts of irrational thoughts. And I know they are mostly irrational, given the fact that Max is eight years old and still has lots of growing to do and progress to achieve.

There is a home for adults with disabilities near a coffee shop we used to go to before it closed. A group of residents would come in sometimes, a mix of adults with mental disabilities and Down syndrome. I'd spy on them the entire time from behind my cup of coffee, watching them talk, laugh and enjoy themselves, as friends do. Sometimes I'd marvel at their camaraderie and feel glad for them. Sometimes I'd tear up as Dave would say "Awww, honey, don't" because I kept picturing Max as one of them.

The truth is, I'm not yet at the special-parent developmental stage where I can think of this. It's still too painful. And yet, what's helped me help Max over the years is researching things that could benefit him. I know I should attend the meeting. From what I've heard, the waiting list for housing is very long, he'll probably need to get on it sooner rather than later, and it would be good to at least learn about it.

I asked Dave if he thought we should go. "Yes," he said, without hesitation. "Let's educate ourselves." He doesn't get emotional about stuff like this.

So I am dreading it, but I'll put on my big girl panties and go.


Photo/Carl Wycoff

39 comments:

  1. I teared up reading this too. I worry so much over my daughter and her future, even more immediate future...say like next year when she is in Kindergarten. Will she have any friends? Will the new teacher try and understand her? Will she be scared?...blah, blah, blah

    I know, I've wrote this before, but I just love your blog and check in on it anytime I'm on the computer. I swear you are inside my brain. Things that you write and even the days you write them are so true. Or at least, so ME.
    Thank you for getting it.

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  2. This is my biggest fear before anything else. I wonder daily who will be there for Racer when me and his dad are gone. I will not rest till I have found a replacement for myself and his father. As it stands now, on the off chance that I get hit by a bus stepping off the curb, the kids go to my mom. She's the one person right now that could care for Racer the way I do.

    Its a sad shame I don't trust the rest of my family or my hubbys family like I should

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    1. Its a sad shame I don't trust the rest of my family or my husband's family like I should no not really. They arent able to prove they can be trusted, so why should you feel bad? And, its NOT a shame or sad at all. There is no pressure on you to feel awful because some people cant be trusted. Its their problem not yours.

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  3. This is probably one of the suckier facts of our lives. Parents are supposed to think about which colleges their kids will attend, whether the kids will be docs or lawyers, whether they'll live closely or not. We shouldn't have to think about whether the help in their group homes will be kind and understand their need for certain foods, their inability to dress themselves, or their need for the same beatles cd played every night. I've heard the lines are looooong in group homes. But the people at JARC (JARC.org, which helps adults in my community) say that by the time my bird is "of age", the might not have the 10 or so homes they have now... The need is growing and they might have whole apartment buildings!

    I try to remember the wise words I heard from the nice elderly lady with whom I sat while our nails dried at a salon... "the world is so big. She will find her fit."

    Thanks for another well written, thought provoking piece!!

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  4. You know what. I think I think the exact same thing as you. My husband would be like yours with out emotion and you know he is right at least educate yourselves about it. I dread looking into the future. I have to focus on the hear and now. It's hard to think about what will happen in the future. I think it's one of my biggest fears too if you want to know the truth. If you do go to the meeting I would love to hear your thoughts.

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  5. As I've said with so many other things--you can try things out and nothing is written in stone.

    At my house we have several different plans on our list: in one scenario, Charlie lives in our home and we create a handicap accessible suite for him. In another, He has an apartment where our garage currently stands. A third, he lives in a group home very close. A fourth, he's in a nursing home. A lot will depend on what he needs when it's time. Maybe I'm just nuts or maybe in denial, but I know that I will fiddle with things until they are the way I want them. If I have to try a couple of different options, so be it.

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  6. Don't forget, Max has Sabrina too. I don't think it is unfair to expect her to be there for him, in your place. Families take care of each other, it's what they do.

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  7. Ellen, as you can imagine, this is something that is often on my mind, too, since my "boys" are adults now. My son Tevis was in a group home for many years. I feel guilty that he spent so much of his childhood there, but he had very explosive behavior and needed non-stop supervision. When he exploded at school, they started calling me to come pick him up; as a single parent, that made it impossible to hold down a job. At first he was in a group home with 6 residents, then he got on a Medicaid waiver program and was able to move to a home with only 3 residents. But I have a very low opinion of the group homes I dealt with. Even the better quality one, owned by very nice folks who really cared about the clients, still had unending problems with staff; given the low pay, they really can't be very selective, and Tevis reported several times that staff people had been fired and/or arrested for assaulting a resident. Luckily, I was able to bring Tevis back home this fall when we moved to Missouri. I wrote a blog entry last week about our experience with that.

    I was able to buy a duplex here in St. Louis, and my other two sons live in one apartment, and Tevis and I live in the other. That way Marcus and Gabriel are able to be somewhat independent, but I'm right downstairs to help them.

    But my great worry is what happens when I'm gone. Our family is not close (great understatement), so I know that no family member will step in in any role. I know how lost I have felt since my own mother passed away in March...how will my boys get through it? Right now Gabriel is in the hospital; I'm so afraid that he will wind up on the streets when I'm not here. The most promising program I've found is run by Resources for Human Development, a values driven organization. They use a "companion model" for supported living, in which a paid staff person actually lives with the client and shares their life. http://www.rhd-mo.org/Supported_Living.html I'm also impressed with the L'Arche homes, in which clients and non-disabled folks live together in a Christian community, but those homes are few and far between and rarely have openings.

    And, yes, get your name on any waiting lists you can...think of it as insurance.

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  8. This made me tear up. This is the question that I dread the most. The, "What will happen to my baby when my hubby & I are gone?" question. My son is two & for now, those "big girl panties" will have to wait. Not ready for them yet. :)

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  9. I go through this too and my Dax is only 2! I try nt to look to far ahead bc it makes me crazy! When u have a child with special needs and u have no clue what their future holds it's very hard! When asked how I do it, I always tell ppl..you just gotta take it a day at a time! But it's sometimes hard to do! I found a YouTube video of a boy from Australia, I think his name is Matthew, he has CP and lives in a home with 5 others, I believe that's how many it was. He said he loves it, that made me feel somewhat better thinking that somewhere in the not so near future, Dax may WANT that. But who knows, I'm not even sure if we have housing around here.?

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  10. Ellen, I went through a training for PATH (Planning Alternative Tomorrows With Hope), it is a person centered, community building approach for people with special needs that helps families develop a PATH that incorporates the individuals wants/dreams and the parents concerns/hopes. We started this process with Sam, bringing the family together on his 9th birthday to begin the scary process of looking at his future (a place that like you I didn't often go). You can see the steps and Sam's PATH on my blog at www.suemayer-specialneedsmom.blogspot.com. At Sam's young age and inability to convey his dreams we had to do some of the dreaming for him but the PATH will change and reflect his desires and development because the focus remains on his hopes and dreams. Putting together the big picture and our options helps me daily focus on the small steps we need to take and work on now. I do think it is very important to learn about the services and programs available in your area since they will be incorporated into the PATH. I now think of it this way, I have an idea or partial plan which gives me comfort, the unknown is what scared me. Sam needed me to do this.

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  11. OK -- everyone has has pretty much expressed my thoughts.

    A good reason to become involved (if you have time & energy)is what you can do for others/society. It seems like all services are lumped together. An adult might not need housing assistance, but there are other services -- theraputic, recreational.

    Just some thoughts.

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  12. Thank you again for bringing up a very important topic. It keeps me up at night thinking about where and what Claudia will be doing and who will help meet her physical needs. Maybe it will be easier as we continually see what our children are capable of doing. We have a special needs trust and a detailed plan of care and a long list of people who I hope will care! I'd hold your hand at the meeting.. this stuff is scary.

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  13. I dunno, when I put on my big girl panties I just...oh crap did I just say that out loud?

    Thanks...I'm here all week.

    But seriously (folks) I can't even wrap my head around my OWN future. How can I think about/make plans for my kids?

    See? They never tell you these things when you are a Dad of ANY kids, regardless of their needs.

    Hell, I drop an Oreo on the floor, I think to myself 'Five second rule? To hell with that...it's an OREO COOKIE. It gets a solid TWENTY SECONDS before I give up on it.'

    And I'm supposed to decide the future fate of my either of my son's? The one with the special needs or the one without?

    HELL NO.

    That's why I carry this...The Wife Is Always In Charge of Everything Card.

    She's smarter than me. More balanced than me. More sympathetic than me. She makes better decisions than me. And she WANTS to be in charge. And frankly? I don't.

    Give me an X-Box and a doughnut and I am happy for at least an hour. The equation is that simple. AS AM I.

    So be sure to get your application today and get your husband to fill it out for The Wife Is Always In Charge of Everything Card if he haven't already. Um...haha...me mean hasn't.

    I never leave home without it.

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  14. I'm so glad you're setting up a SpNeeds trust. We went thru MetDESK (though I think they've changed their name) - what I learned about SSDI eligibility is horrifying. Inheriting my 10 yr old car would screw over my little girl, nevermind employer-provided life insurance. No one ever talks about it and I don't think many people get it done - but I don't really talk about it because I think I sound like a cheesy salesman. No one likes talking Death (or Money).

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  15. Have you heard of the Independent Living Movement? It's basically saying that the individual should live in the home he/she desires just like everyone else. If they need supports in their house, then that should be provided. No one should be forced to live with strangers not of his/her choosing and be supervised just because they are disabled. I LOVE the independent living movement and hope that is the future our children will inherit - google it, I think it will make you feel a bit better :-)

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  16. Right there with you on this topic,
    please let me know which big girl panties work best?

    : )

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  17. Holy Buckets... this is the "heavy" burden we get to bear as parents of SN kids. My husband is so level headed, smart, educated. We immediately set up a SN trust. We immediately made an appt w/ a SN attorney and have EVERY single detail as it pertains to Derek's life now set in stone. Nice thing is that it can be changed at any time. Your son needs you to do this. The more educated you are, the more protected he is... the better off you will ALL be (Sabrina) included. Don't get me wrong. It took almost a year to even get the bare bones initial stuff set up. Thinking about all the minute details kept me up night, but now I sleep pretty well knowing I have done all I think I possibly can to protect him now and into his LONG future. Do it Helen!!! Then please let us all know how it went.

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  18. Thank you for this post! You really hit the nail on the head. I am so happy to hear another mom saying the same thing I feel. The "f" word is so full of fear for me as well. I don't like to think about it, because it is so full of unknowns. No mom wants to think of their child being without them to protect them, but having a child of special needs really makes this issue that much more unbearable.

    I just finished having a conversation with my own mom about how much I fear for my daughter's future and what would happen to her if I wasn't around. No one understands her as well as I do, and I want her to always know patience, unconditional love, and understanding. These are big expectations from someone who has to raise a child that isn't their own.

    Sadly, I wasn't raised with these three important things. Therefore, I can't see my daughter going to my family. They love her, but they don't really understand the importance of putting my child's needs first above their own. Money is how they show they care, unfortunately there is no amount of money that can buy away her struggles.

    I haven't even grasped the future of next year. I am already struggling with not letting it get me down to watch the children of my friends and family who are younger than her - pass her by in development. I don't compare her, but I feel I can't bury my head in the sand. I need to understand what children her age are doing to help her learn and stretch her boundaries.

    I admire your strength - openness and honesty - it really helps people like me to open up more. Share my hidden pain, strengthen my ability to take this journey - and most of all maintain the positivity that is so important.

    On a more positive note, I think we are the lucky ones. We understand the importance of celebrating the current successes (big or small) and leave the future open. All children could gain from this perspective from their parents. Nurture and love "what is" not what you "hope to be". My daughter has taught me to slow down, celebrate and love the things each new day brings. I am lucky to learn this lesson - I am truly happier because of her. The pain we feel is real, but it is a testament to our strength. We have been given the gift to feel things openly and strongly - I think the fear and pain is what allows us to feel the real strength of the love! We can't control the future, but in our hearts we know we are working hard to help our children face it. All the blinders are off, we challenge ourselves everyday to teach our children to handle the hardships of life and still shine like the stars that they are!

    Sorry for all the rambling, I just needed to brain dump all of this going on inside. I feel lighter and ready to face the new challenges ahead! Thank you! Raising our little stars are a joy we can share - even as a reminder when things don't look so great.

    Hugs to you and all that are privileged to have these angels in your lives as well!

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  19. Good for you Ellen! I'm just getting my feet wet in this area and Ben is 16, turning 17. I wish I'd done it much sooner.

    And by initiating this topic, your readers have identified some interesting resources. I hope you go to the meeting and report back to us. It is on my "to do" list to meet with someone from community living so I can get my son on all the "lists."

    And yes, I would like a pair of big girl panties too!

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    1. But maybe you werent emotionally ready to deal with it then? And I'll wish you luck.

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  20. My Olivia turns 10 in February. 10. Did you hear that??? In 8 years she will be a grown-up and I have to put my big girl panties on soon too and think about that stuff. But. I. don't. Wanna.

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  21. I have several friends who have gone through this, and yes, you do need to be moving on it technically before you're emotionally ready. During the interim time, either you'll get ready, or you'll determine it's not right for him and pull him off the list with nothing lost.

    The right group home can be so amazing! You can be involved at the level that works for everyone, and you have peace of mind that he's taken care of at times when you can't help. Plus, like you said, th independence for him.

    The thing that always gets me is the paradox: I want to know that my kid will be taken care of if I can't do it, and I don't want the whole thing on me even when I can. And yet, I want to be the one taking care of my child!

    I wish you so much continued strength.

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  22. I highly recommend the film Rachel Is. It is a documentary created by her older sister Charlotte the period of Rachel's transition to independence and adulthood.

    http://www.jacktarfilms.com/rachelis.html

    Her mother Jane has also written some fabulous books

    http://www.janebernstein.net/index.htm

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  23. It seems like you are on the right track. Don't fret! Stay focused on Max's abilities, rather than "disabilities" (the f word, for example) and you'll stay positive and encourage personal growth.

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  24. It's been 11 months since my now-three year old son was diagnosed with Autism and while none of us know what might happen tomorrow, his future is terribly unclear at this moment. You took the words out of my heart -- I'm not at the place yet where I can consider future options and even fathom his life without me by his side.
    I love your blog, I read it frequently.
    I live in Maryland and I'm just now beginning to look into programs that might benefit us, now and in the future.
    I do believe that it does no harm to put yourself on every possible list ... what's the worst that can happen? Your number is up and you have to turn them down?! Just gather all the info -- you don't have to process it all yet. I find that reading, educating myself, which is what I need and want to do is the very thing that derails me emotionally. It's just all to heavy. I'm hoping that feeling ebbs soon because I have stacks of books to go through and agencies to contact.

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  25. Goodness, bring a tissue as well. I am pretty much in the same place you are SO after reading this I feel like I have swallowed cement. It doesn't make me tear so much as want to gag on my total fear. The looming unknown is heavy. Good for you guys!

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  26. This put some tears in my eyes. As mom to two kids with autism, I think "How am I going to get them through?!". It's so overwhelming to think about the future. I guess I just always picture that I will be at my childrens side forever. But I'm sure my mind just won't let me really think about the magnitude of it all. I haven't even been able to teach them those things most of us would consider "basic daily living skills". I guess I just keep telling myself that they have their own journey and they will only continue to go forward....it sure is hard to picture seeing them in an independent living situation. It's hard enough to not imagine knowing just where they are every second of the day. But I have also been blown away by the things that have shown me. Thanks so much for sharing.

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  27. I have felt the same way sence I found out that my son had stroke at birth and have spasms. but then I look at my friend that son has autism and she took care of him from birth to the day he dead 2years ago at the age of 39 so She my roll modle about keeping the child home intell you are of old age and can't take care of them . and my best friends work in the afc home in michigan and thier not to bad we have 5 in are small town so I do no what thier and you can vist them any time you like least here you can. I am hoping family neices or other children will step in and help when that times come so let pray and hope that God has the right path for all are special kids in are life that needs us

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  28. Clearly, this is a biggie for a lot of us. My concern is mostly about Max's functionality as an adult, even with us around. Stacie, I definitely AM going to that meeting, and I will fill everyone in on what was said. GreenGirl, if you'd like to come hold my hand, that would be wonderful. You might need to hold Dave's hand, too, though I can't be sure.

    Dani: I love "She will find her fit." There is an unknown here--what WILL our kids be like? How WILL they cope? Nobody has those answers now.

    There's another unknown I hadn't even considered till I read some comments here, including Galen's mention of "companion models," and emails I got: as all our kids age, more options will surely open up. Galen, I love the duplex scenario.

    Anon Y Mous: I would never expect Sabrina to be his primary caretaker, if it comes to that, though I hope she will help him a lot.

    Sue: Thanks for informing me and many people here about PATH—it sounds wonderful, and we will be looking into it.

    Ken: You make me wish I was a little less mature, and I mean that in the nicest of ways. I'd love to benefit from a The Wife Is Always In Charge Of Everything Card, but technically that isn't possible. I do have a The Husband Is Always In Charge Of Oil Changes Card, not sure that's the equivalent, though. Whatever. The best way to parent kids with special needs (or any kids) is for each of you to play to your strengths. If your strength is being a loving dad and X-Box expertise, more power to ya.

    Kristina: I hadn't heard of the Independent Living Movement. That's another thing I really haven't pondered: what MAX will want. I don't know what we're gonna do if he wants to live in a hut in Tahiti.

    Shannon: Max has taught me much as well. And YES, it is good to brain dump. Ahem.

    Jen: Wow. I actually know the cousin of the sisters in Rachel Is; she mentioned it to me a long time ago, and I forgot about it. Thank you, I need to see it.

    And Sabra, your fears are the same ones that make me adverse to going to meetings like these, although I will. Like Stacy says, "It's good to gather info." Even if it hurts.

    I wish you all continued strength and Big Girl Panties. Ken, what size are you, anyway?

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  29. Good for you on at least educating yourself! Group homes have a stigma but they have changed a ton over the years and are increasing becoming less institutional. For example, in Mich., the state will not approve homes with more than four beds, which allows for pretty good caregiver ratios. Also, if you don't like what you learn, then there's an opportunity! :)

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  30. Ellen, that is some ways away, but face facts--kids DO move away from home. Hell, I am the wierdo in my family, I moved back home with my parents in my middle age!!!!!! If your Max or my Buster end up moving into an assisted living arrangement instead of moving into a college dorm or running off to join the Peace Corps, well, what's the diff? It is the same sort of "There goes my baby" no matter where they go when they leave the nest, now, isn't it?

    Some of those homes are just so-so, others are absolutely great. There is a good one not far from me, in fact, I am thinking about applying to work there if they have part-time opportunities, just to get a better/closer look at how it is run (and to earn extra money). Right now I work part time at a nursing home and it is hard work -- the residents are real sweet, though.

    If you haven't seen the movie BEST BOY (I mentioned this before) you need to see it. It is an old (Oscar winning) documentary from 1980, but the issues are the same and I totally related to it. You don't have to spend money to see it, it is on YOUTUBE and WELL WORTH THE TIME to see it. You see the parents getting older, the son, who has always lived at home, stagnating without school and other interventions, and how his cousin is the one who comes in and persuades the parents to let the kid go--and the kid (he's fifty at this point, or nearly so) BLOSSOMS. See the film. Tell me what you think.

    Here's the first section--you can find the rest of it once you start here: http://www.youtube.com/watch?v=QNvVJ6RGoUg

    Here's the blurb for it: It came out of nowhere to win the best documentary Oscar in 1980, and by now Best Boy should be acknowledged as one of the finest documentaries in film history. Filmmaker Ira Wohl took as his subject his own cousin, 52-year-old Philly, a retarded man who had lived his entire life with his parents. Seeing the physical decline of the parents, Wohl suggested they prepare Philly for living away from home for the first time in his life. This process becomes a beautiful and soul-stirring (and even hilarious) experience, as the people in Philly's life become indelible characters. Many fiction films try to manufacture a kind of movie "magic" out of fantasy, but Best Boy finds it in tiny steps forward, the delicacy of family, and the joy of singing (you may never hear "If I Were a Rich Man" the same way again). Through it all, the irrepressible Philly emerges as a rich man in his own terms.

    I fell in love with Philly--it's a great film.

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  31. Ellen, that is some ways away, but face facts--kids DO move away from home. Hell, I am the wierdo in my family, I moved back home with my parents in my middle age!!!!!! If your Max or my Buster end up moving into an assisted living arrangement instead of moving into a college dorm or running off to join the Peace Corps, well, what's the diff? It is the same sort of "There goes my baby" no matter where they go when they leave the nest, now, isn't it?

    Some of those homes are just so-so, others are absolutely great. There is a good one not far from me, in fact, I am thinking about applying to work there if they have part-time opportunities, just to get a better/closer look at how it is run (and to earn extra money). Right now I work part time at a nursing home and it is hard work -- the residents are real sweet, though.

    If you haven't seen the movie BEST BOY (I mentioned this before) you need to see it. It is an old (Oscar winning) documentary from 1980, but the issues are the same and I totally related to it. You don't have to spend money to see it, it is on YOUTUBE and WELL WORTH THE TIME to see it. You see the parents getting older, the son, who has always lived at home, stagnating without school and other interventions, and how his cousin is the one who comes in and persuades the parents to let the kid go--and the kid (he's fifty at this point, or nearly so) BLOSSOMS. See the film. Tell me what you think.

    Here's the first section--you can find the rest of it once you start here: http://www.youtube.com/watch?v=QNvVJ6RGoUg

    Here's the blurb for it: It came out of nowhere to win the best documentary Oscar in 1980, and by now Best Boy should be acknowledged as one of the finest documentaries in film history. Filmmaker Ira Wohl took as his subject his own cousin, 52-year-old Philly, a retarded man who had lived his entire life with his parents. Seeing the physical decline of the parents, Wohl suggested they prepare Philly for living away from home for the first time in his life. This process becomes a beautiful and soul-stirring (and even hilarious) experience, as the people in Philly's life become indelible characters. Many fiction films try to manufacture a kind of movie "magic" out of fantasy, but Best Boy finds it in tiny steps forward, the delicacy of family, and the joy of singing (you may never hear "If I Were a Rich Man" the same way again). Through it all, the irrepressible Philly emerges as a rich man in his own terms.

    I fell in love with Philly--it's a great film.

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  32. Felicia, you're right. But I am SO irrational about all of this. I know about Best Boy, because you mentioned it and because I once did a roundup of films with people who have disabilities: http://www.lovethatmax.com/2010/01/avatar-and-other-movies-with-disabled.html

    I would need to be in a certain mood to watch Best Boy. I'll let you know.

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  33. Ellen, I totally get the whole irrationality thing. It's normal and a natural response, really. Who wants to throw their "defenseless" kid out into the cold, cruel world with bums that don't know their needs and can't take care of them half as well as we can?

    I kind of got trapped into watching a portion of the movie at a friend's house, and I recommend it because it really did, in my case, start the wheels turning about that F word. I came in towards the end (the ending is good) and that's what motivated me to slog through the whole thing on YOUTUBE (I needed a few tissues during parts of it, but overall it was a good experience). It helped me make some decisions and get off my ass and deal with reality, but I do get it...each at their own pace.

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  34. I am with ya sister! My daughter is thirteen so it is looming larger for me. I cannot bear the thought of it. My husband has brought up her future several times, I don't know if he wants her to move out on her own, but I sure don't. Like you I think - "How can I go one day without kissing her?" and "Who else could take care of her like I do, who else would care as much?

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  35. Thank you for this post. I'm new to your blog - just found it thru a friend today. I'm the mom of a 3yr. old w/ cerebral palsy & other developmental disabilities due to a severe brain infection/ meningitis a few days after birth. I SO get it about the "f" word - just reading your post made my heart beat faster & I felt like I was going to hyperventilate just thinking about it. And I know there is SO much more time before we even have to consider this, but i just can't help thinking about it sometimes .... and stressing myself out ...

    So thank you for the reminders today. I look forward to reading more of your blog in the futurer!

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  36. I know there is a lot of time before I have to worry about it. My daughter Amelia who is 1 has spastic monoplegia. I don't worry about her long term future because I believe she is going to be fine. CP only affected her left leg. Her cognitive development is on track and her speech sounds like how someone who does not have CP would talk.


    Sometimes I feel alone because my daughter is the only one with spastic monoplegia. (SM is a mild uncommon kind of cerebral palsy only affecting one leg or arm). Humans with this form generally have a good life and prognosis. It is something I'm truly grateful for.

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Thanks for sharing!