A Future with Developmental Disabilities - Eric

March 30, 2010

A Future with Developmental Disabilities – Eric

In a previous post I said that I would be talking to other families about their visions of the future for their child with developmental disabilities. I spoke with Eric’s Mom recently about the future of her twenty year-old son.

On a scale from one to ten, with ten being total care and one being “I’m OK Mom, I can take care of myself.”, what is the level of care that Eric will need? Eric would fall somewhere between a nine and a ten.

Do you have a plan in place for Eric when you are no longer able to provide care for him? “I think planning for the future is out of our control.” Eric’s Mom knows that Eric’s future depends on the availability of services and it’s not a question of what her plan is but if she can plan.

What are your primary concerns for Eric’s future? Eric’s Mom wants him to live in an “environment of love, caring and with positive people.”

Where would you like Eric to live when he can no longer live with you? Eric’s Mom doesn’t care so much about where he will but how he will live. If he can get what he needs in an environment that meets all of his needs – not only physical, but emotional and social, she thinks that he will do well.

Is there someone to oversee Eric’s care when you no longer can? Eric’s Mom has a sister who is willing to step in should the need arise and Eric has a younger brother who will probably participate in his care to some extent someday.

Do you have an idea when you or Eric will be ready or need to live on his own? If there were opportunities available, Eric and his Mom would “absolutely be planning on him to move now”. Eric’s Mom feels that he is “ready now, pretty much” but there are no options for him at the present time.

What is your best hope for Eric’s future? Eric’s Mom hopes that the environment that will meet Eric’s needs will someday be available for him.

Eric’s Mom mentioned a quote that she read somewhere that says, “We all need someone to love, something to do, and something to look forward to.” And she wonders why should Eric be any different than anyone else.

A Future with Developmental Disabilities - Kay

March 25, 2010

In a previous post I said that I would be talking to other families about their visions of the future for their child with DD. I spoke with Kay’s Mom last week about the future of her 18 year-old daughter.

On a scale from one to ten, with ten being total care and one being “I’m OK Mom, I can take care of myself.”, what is the level of care that Kay will need? She would be a 9.

Do you have a plan in place for Kay when you are no longer able to provide care for her? “No”

What are your primary concerns for Kay’s future? Kay’s Mom wants her to have “something meaningful to do with her day” She notes that everything will be dependent on the funding to make it happen.

Do you know what type of housing you would like Kay to have when she can no longer live with you? “I haven’t thought that far ahead.”

Is there someone to oversee Kay’s care when you no longer can? Kay’s brother and sister will be her guardian’s. They will not be providing her primary care but will definitely oversee her care.

Do you have an idea when you or Kay will be ready or need for her to live on her own?  “Oh, ten years or so.”

What is your best hope for Kay’s future? Kay’s Mom would like her to be around people who love her and people she can love. ‘I want her to have a busy engaged life in the community.” Kay’s Mom is not sure how to make that happen.

Update to Recent Posts

March 23, 2010

A quick update on two subjects:

Day Programming 2010 – New Jersey – The State of New Jersey has announced that they have restored day programming options for the June 2010 graduates. The announcement on their site reads:

Clarification of Day Services Policy for Individuals Currently Seeking Services - March 2010
There is no change from past practice concerning the process by which DDD-eligible individuals who are now in need of day services may request and receive them.

This is very good news for the many families that were so upset about the prospect of their child, who is aging out of special education services, not having anywhere to go or anything to do when June rolls around. Day programming has been made a line item in the just announced Governor’s budget proposal. This should help a great deal toward resolving the question that arises at this time every year – Will funding be available for day programming this year? Thank you to everyone who made this possible.

The Sandwich Generation - Well, I’m on my way to Florida today. The injured DSP has recuperated enough to come back to work and just in case she’s being optimistic, Lauren’s other two DSP’s have offered to fill in where needed. It’s always a challenge to figure out hours within your budgeted amounts when you have to shuffle people around to fill in an emergency or temporary schedule change. But, it’s doable if you are creative, flexible, and have a calculator. I don’t know what challenges await me in the Sunshine State – I hope at least there really is sunshine.

The Sandwich Generation

March 18, 2010

Lauren and I went to the mall yesterday – girl’s day out. While I was sitting in the food court feeding her lunch I was thinking about my trip next week to check on my elderly parents who live in Florida. As I was wondering what I will find when I get down there, I was reminded of my last shopping trip with them.

My parents, then in their early eighties, had asked if I would take them to the mall because my Mom needed to buy a coat before they returned to Florida. (I don’t think she trusted Dad to help her pick out the right one.) My parents are really doing very well despite their age, but my Mom can be a little unsteady on her feet at times and doesn’t see very well. And Dad, well, he’s in amazing shape and thinks if my mother just got more exercise she’d be fine – you know the “just suck it up” approach. Now bear in mind that I also have to bring Lauren on this shopping excursion.

So, I pull out the sale flyers and figure out that J.C. Penney will probably be the simplest place to go. While looking through the flyer I see a set of dishes that are just what I’ve been looking for – great! So, I get everybody in the van and off to the mall we go. Well, the selection process took a little longer than I thought it would and now I need to feed Lauren, and my mother has worked up an appetite trying on all those coats. If you deny my mother food...you will pay. Of course, the food is at the other end of the mall. What to do? My father says, “Oh we’ll just take a stroll down to the food court. It’ll be good exercise for your mother.” Well, it was a very slow process but we made it. I get everybody fed and consider how to get everybody back in the car - at Penney's.  I probably should just go get the car. My father suggests that I take Lauren and go get the dishes that I didn't get, and they’ll take a little rest, and then another leisurely stroll back to Penney’s to meet me in front of the store. “Are you sure??” “No problem!”

I take Lauren and return to Penney’s, buy my dishes, check out a few other things and make my way back to our meeting spot. (Gee, those dishes were heavier that I thought they would be.) And....no parents. Fifteen minutes later.... no parents. Ten minutes later...no parents. Where are they? Something must have happened. Did they get the meeting spot wrong? Of course, they don’t have a cell phone. What in the heck do I do? I can’t drag ‘service for twelve’ around the mall while I look for them. So, I make my way out to the car as fast as I can, pushing Lauren with one hand. I put the dishes in the car then race back to the meeting spot in case they’ve arrived. They haven’t. I retrace what should be their route all the way back to the food court and.....they’re still sitting in the same spot. And, my father does not look too good. He’s feeling light-headed and they were afraid to leave where they were. Of course, my wobbly, sight-impaired mom couldn’t go off by herself to get help. Now what do I do? I get hold of mall security and ask if they can get me a wheelchair – for my father. A few minutes later a security guard shows up and takes one look at our “interesting” group and, bless his heart, doesn’t make one comment. I ask him to wait with my parents while I – you guessed it – take Lauren and go all the way back to Penney’s where the van is parked, put her in the van, and drive around the mall to the food court entrance. In the meantime the wheelchair has arrived and they’ve gotten my father into it. My now visibly upset mother is hanging on as they meet me at the entrance of the mall. By now, two other security guards have shown up at the van. The two new arrivals take one look at my parents and Lauren already in the van in her wheelchair and turn to me with a look that says, “Lady, are you nuts!” I don’t think they believed my decision to “shop” with my three companions was a wise one. And, believe me; at that point I was in full agreement.

Thankfully, we found that my father had an inner ear infection and was soon back to his amazing self. My mother got her coat and I got my dishes. But there were three security guards that were probably shaking their heads for several days afterward.

My parents are now in their late eighties and I’m truly finding out what being in the “sandwich generation” is all about. I know they’re not telling me everything about how they are faring (I have spies.), and I worry not only about how long they can live on their own, but how I will ever convince one very stubborn father and a “whatever Dad says” mother that they need help. Fortunately, with the help we now have with Lauren, I can at least take the time to go check on them. Except for one problem, one of the DSP’s has just injured her knee and may not be able to lift next week. My parents are waiting for me, all excited that I’m coming. But now I’m asking once again, “What in the heck do I do?” I’ve got my plane ticket. I’ve rented a car. I’ve carved out four days to make this trip. I’m torn between a daughter who can’t do without me and parents who shouldn’t have to – and until I can see for myself – may no longer be able to. I’ll let you know how this all plays out. You know, some people go to Florida just for the fun of it.

Day Progamming 2010 - New Jersey

March 11, 2010

Lauren had a seizure early this morning and it didn't make any difference in my schedule for the day. For twenty years, I could not make that statement. When Lauren has a seizure she usually sleeps until the afternoon and then is groggy until dinner time. So when Lauren used to have a seizure it would cancel any activities, meetings, appointments, or commitments I had planned for that day. When she was in school – that meant we were both home for the day. Now that Lauren is in self-direction, there is a DSP to provide care wherever she is – if she needs to stay home today – it’s not a problem.

Lauren has two to four seizures a month. When she was younger and before the medication, Keppra, was available, she had several different kinds of seizures and often more than one a day.  So, she could easily have over twenty seizures a month.  As like many other mothers in similar circumstance – meeting the significant needs of a child with developmental disabilities – I gave up any thought of a career or life of my own to be available to care for Lauren.

As another school year draws to a close, parents in New Jersey who have made the only decision they could – stay home to be there for their child – are facing a cruel form of discrimination. Due to budget woes, the State has changed its policy of providing day program services to almost all children leaving school at the age of twenty-one. Now these young adults must adhere to the criteria for an “emergency placement” in order to be eligible for day programming. One of the criteria states, “The individual requires supervision which is not available during the day and is at risk of imminent peril.” Yes, those individuals whose parent sacrificed their own life to care for their child will now be asked to do even more. Unless they find a job (in this economy, having been home for twenty years) they will, you guessed it, be “available” to provide supervision during the day.

I can’t even fathom how these parents must feel. I can’t wrap my mind around dealing with providing care for a child with significant needs for their every waking moment, seven days a week. And, how sad for this young adult, after years of having a semblance of their own life – even if it was only going to school – they will now have nothing. How can this scenario not result in premature placement of this individual in a residential placement which, by the way, is not available either. What’s the alternative? An institution. You will have parents physically and mentally burning out faster than necessary and a young adult, most likely, regressing or reacting to the isolation and lack of stimulation of a life without options. This will be the result of the State's inability to provide about thirty hours a week of day programming. As a parent what do you do when you are left with no acceptable choices? What do you do when your choices are providing 24/7 care or abdicating to an institution? What do you do? I am afraid to contemplate their answer.

And the Winner is.....

March 8, 2010

It's award season, Oscar, Emmy, Tony, Grammy – you know, the time of year when all the celebrities get together, wear expensive clothes, and gush over each other. Watching the Oscars the other night I was amazed by the sheer number and variety of awards. There is not only the top film and top actor awards, but Best Original and Best Adapted Screenplay, Best Sound Mixing and Best Sound Editing, Best Song, Best Documentary Short Subject, Best Live-Action Short Film, and the list goes on and on. So, I started daydreaming – what if there were an awards show for parenting a child with disabilities. I know, I know, weird, huh. But just go there with me. What would we call it? Well the Oscar is named after an Academy employee’s Uncle Oscar who purportedly looked like the statuette. The Emmy is named after a camera, believe it or not. The Tony is named after a famous Broadway actress, and the Grammy is a diminutive form of gramophone. Ok, let’s see – how about the Maddy (mom and dad), nah, or maybe the Tressy (a diminutive form of stress)?  Or, better yet how about a lovely statue of a gilded hand – the Handy – since we never seem to have enough hands (especially while trying to push a wheelchair through any door).

What would the categories be? Well, of course, the top categories- Best Mom, Best Dad - would be so crowded with nominees that a winner could never be picked.  But what about Best Adapted Environment (recognizing the ingenuity of parents with inaccessible homes who can’t afford to move), Best Interpretation of Non-traditional Communication (when only the parents can tell what their child is trying to communicate), Best Live-Action Short Car Trip (traveling anywhere with your autistic child who can work a seat belt buckle), Best Documenting of Medical Conditions (for the parent that has had to update a new doctor now that the pediatrician will no longer treat her 21 year old.), Best Song Memorization (for the parent who is still singing The Wheels on the Bus as requested by his adult child), There could be a Humanitarian Award for the parents who have gone the longest without a child-free vacation. Then, of course, there’s the Lifetime Achievement Awards. There would have to be a waiting list for that one. But, that would be OK. Parents of kids with developmental disabilities know all about waiting lists.

I wonder where we could hold the ceremony. Of course, it would have to be accessible. And, they’d have to bring the awards to the recipient’s seats since it would be a logistical nightmare otherwise. Plus, those seat fillers (the people they stick in the empty seats so the camera only shows a full house) would freak a lot of kids out. The best part would be the acceptance speeches. Can you imagine what parents would say? “I’d like to thank my husband.  I wouldn’t be here it he hadn’t pulled me off the ledge last year after I found out my son was number 4,369 on the residential placement list.”  Or maybe, “I owe my performance all to my doctor who is always there to renew my Xanax prescription.” Or, more likely, “I’d like to thank my daughter who has made me a better person than I ever knew I could be, who has shown me what is truly important in life, and who has so much to share with the world, if the world would only acknowledge that God doesn’t make mistakes."

It could be a grand night. We’d love to wear pretty clothes and eat wonderful food (Do you think Wolfgang would be available...or maybe we could ask Emeril!). Would it be in California? – I bet it’s warm there this time of year. But, of course, few would be able to get there. And, who could afford it?? Who would organize it (don’t look at me)? Wow, how different two worlds can be! But it's fun to fantasize isn’t it? So indulge me for one more minute as I accept my award for Best Attempt to Escape Reality – “I owe it all to my family – my daughter who grounds me and my husband who indulges my flights of fancy, between the two, my sanity remains as golden as this Handy.”

Facebook and Lauren

March 3, 2010

If you’ve scrolled down to the bottom right hand side of this blog lately you may have noticed that Lauren is now on Facebook. I’ve been trying to come up with not only a way to help Lauren to connect with people, but also a way to provide an opportunity for others to know what is going on in Lauren’s life. I’m hoping Facebook may be the answer. The number of people that Lauren sees on a regular basis is very small. But there are many people who skirt the edges of her life. We all have those kinds of people in our lives, those friends and family members that you really only see a couple of times a year. Why do you still feel connected to them when you don’t see them very often? Maybe because when you do see them or give them a call, you can catch up, share what’s been going on in your life, and reinforce why you want to stay connected. Lauren can’t do that. She can’t call somebody and update them on how her life is going. When she goes to a family party or runs into an old friend, she can’t tell them about the new caregiver she hired or her pick for the next American Idol . When people she doesn’t see regularly are in her company, they have very little to talk to her about and end up talking to me, about her...or ignoring her completely. I think people would be more comfortable around Lauren if they had the opportunity to know her better, to know what her life is like, to know that she has interests, and preferences, and gripes, and, basically, a life.

I’ve mentioned before that we tried forming a circle of support and it never got off the ground. I don’t believe the people we invited felt any real connection with Lauren. They were, for the most part, people I knew, not people who knew Lauren. But if people could get to know Lauren better, if they begin to have a connection and understanding of who she is, they may be more willing to make an investment in participating in her future or caring about her well-being. Of course, Lauren needs a caregiver, or me, to help her use Facebook, but it’s very easy to allow her to make a comment about her day, what her plans are, or how she’s feeling. I’ve set it up with the highest security setting and if you’re not an allowed friend you can’t get on her page. I’m encouraged by the initial response. Within three hours of sending out the first friend requests, Lauren had fourteen friends, including first and second cousins, former caregivers, and a half-sister who lives in England. Within three hours, Lauren had a significantly improved connection with the world. I hope Facebook will expand Lauren’s world and expand the knowledge that other’s have of her world.

A Future with Developmental Disabilities – Matthew

March 2, 2010

In a previous post I said that I would be talking to other families about their visions of the future for their child with developmental disabilities. I spoke with Matthew’s Mom recently about the future of her thirty-five year old son.

On a scale from one to ten, with ten being total care and one being “I’m OK Mom, I can take care of myself.”, what is the level of care that Matthew will need? Matthew would be a five.

Do you have a plan in place for Matthew when you are no longer able to provide care for him? “No”

What are your primary concerns for Matthew’s future? Matthew’s Mom wants him to be with people who care about him. She feels that as long as that is in place everything else he needs will follow. “I want someone to love him.”

Where would you like Matthew to live when he can no longer live with you? Matthew’s Mom thinks that a supervised apartment with good agency oversight would work for Matthew. She would like the apartment to be in a town, not out in the country, so that he could get around to things.

Is there someone to oversee Matthew’s care when you no longer can? Matthew has two brothers who know him well and can help in overseeing his care.

Do you have an idea when you or Matthew will be ready or need for him to live on his own? Matthew’s Mom says that he was ready about five years ago. She wants to be able to watch over him as he begins a more independent life in order to make sure that all of his needs are going to be met. She also feels it would be better for him because, “The longer he’s with us (at home) the less he thinks he will live anywhere else.”

What is your best hope for Matthew’s future? Matthew’s Mom feels that Matthew would do best in that well supervised apartment with one roommate and the love and support of his brothers.

Matthew’s Mom and I discussed the role of the provider in the future of our children. We may be comfortable and pleased with the performance and commitment of the provider agency overseeing our child’s care but that can all change if the management or administration of the provider changes. That type of change can have a significant impact on the future and well-being of our children and we may not be there to address any issues that may arise.