Subject: Response to Tammy Scott's Question re Group Home Decision

Hi Tammy:

This responds to the question you raised in your recent e-mail message--When did David go to a group home? David moved into his group home in March, 1995. He was 27 years old.

First, Tammy let us say that this decision has to be based, not on emotion, but on the realities of your situation. We were a cohesive family with a stay-at-home mom. We tell you our story only to share the experience, not to influence your decision.

Shortly after David was diagnosed as "brain damaged" (he was about two years old), the doctors we consulted with and our family physcian all recommended that we place David in an institution (group homes were relatively new then and those that were available were for adults). We couldn't think of placing David anywhere. He was ours, he was us. We had no discussions about placing him at that time but the seed was planted in our minds and we knew it was something we would have to confront. As we were helping our other kids make their futre plans it seemed natural to us that David, even though he was special, should be treated like our other children. That meant that at sometime, around the age kids leave college these days, we would allow David the same independence the other kids have. That, then, was our decision and our goal. As he got older, bigger and stronger and we got much older, smaller and weaker we knew that we wouldn't have had to make a decision--it was made for us.

Please know that making the decision on placement and having it happen are two very different things. The meetings attended and the work involved could fill a book. With funds becoming tighter and courts closing state institutions it probably will be even harder to make an affirmative decision on placement a reality.

Having David in our home for 27 years brought much joy and love. How many parents have a child in their 20's, that weigh well over 200 lbs, sit on their lap and give them a hug? What a blessing! David surely is one of God's blessings in our life.

Good luck Tammy. We'll be thinking of you and will keep you in our prayers.

Carolyn, Fred and David (28) Windbeck, Silver Spring, Md.

Subject: Re: placement

Okay. I've almost come to the end of my rope. Has anyone investigated residential care for their angels? I'm in CT and not able to pay much if anything for Juli to be placed somewhere. I'm just having a very difficult time with her at home and very expensive. I get some respite money but it is never enough. When she's home from school for whatever reason (ie. vacation or sick), it costs me $100 per day so I can go to work. So I'm asking for all help. Am planning to call my DMR case worker - but CT has just closed down their residential places and I don't want to give her up completely - I want some say in where she goes, etc. This is very hard for me to write about as I'm sure you are all well aware. Are there scholarships at homes? Do I have any hope or will I grow grayer and older with her for the rest of my life? Being a single parent is hard enough but dealing daily with the trials and joys of an Angel child is getting to me. She's getting bigger and I don't want her locked in her room or the hallway forever. If she's outside, she takes off on her bike. If she's in her kiddy pool, she climbs out and wanders off. I have no peace, except when she's asleep and then I listen to her constantly for seizures (laughing fits) or anything else. At school is another thing but the hours she's gone is only from 7:30 til 3:00 M-F. My 12 year old son can watch her at night if I go out locally but that's after she's in bed. What can I do? Help, please. Can reply to Syburlady AOL (however that works)

Carley in CT, mom of Juliette (age 8) (and adorable, but full of the devil)

Subject: Re: placement

Dear Carley,

I can sympathize with your difficult situation -- but so far I have been pretty fortunate in finding "time out" since I live in a small community and have a lot of family around to help.

One thing we have worked out however, is hiring local college students to come in when we need to. They tyypically have a lot of stamina (more than I do at the end of the day) and can always use the extra $$. It does not cost $100 / day but usually about 5.00 / hour.

We have even considered working with the college to see about implementing a program under their health option, where the students might receive credit -- but I have not really pursued this yet.

Hang in there and I hope you can work something out. As parent's we no good to anyone if we are exhausted. I hope your local rep also can come up with some creative ideas.

Kathy

Subject: Re: placement

On June 18, Syburlady wrote that shee was at the end of her rope. We are fast approaching a time when we no longer will be able to care for our son Danny (Age 10, Del +) at home. As much as we love him, we have to be realistic about our situation and fair to our other two children. If anyone knows of a good alternative living arrangement for AS children or have good ideas on the subject, please post them. Unfortunately, a lot of AS families will have to face this hard decision some day.

Syberlady, hang in there. Regards to all.

Rick Enright

Subject: re: Re: placement

To Rick & Sharon & everyone,

For those of us with children a little older just the physical strength needed to care for these kids does get to be quite a strain...I have been without a home health aide for about a month now, and the strain on the family has been intense...I firmly believe the key to keeping these guys living at home as long as possible is having quality help at home (which we all know is REALLY hard to find)...my worry about Ben (9), which is why I want desperately to keep him at home as long as I possibly can, is that he is so attached to his home environment and his family. I have heard of a case of an older AS child who got so depressed when moving to a group home that he ended up having multiple seizures that either the home personnel didn't recognize or didn't know what to do...anyway, he ended up in Intensive Care at Children's...Ben is so sensitive to his surroundings I can easily envision this happening...my goal is a community group home nearby when he is 18+...am I dreaming or what??:-)

On another note, though, Rick & Sharon, check out the May Institute in Chatham -- it's residential and supposed to be very good...a closer alternative, though, might be Evergreen, based in Milford. There are actually two Angelman teens at Evergreen, so you could talk to the parents. Cardinal Cushing is also another residential alternative, although I don't know anything about it.

Best wishes,

Jeanne Seltzer

Subject: Re: placement

If there were support systems out there that worked for families like ours, we wouldn't have to place our children. I don't mean group homes or institutions. I mean systems that were effective where people could come into our homes and help us. This could mean take our kids out into the community, play with them, work with them, bathe them, help us with housework, etc. The things we do for them all the time. Also why aren't there more programs where our children can go and have FUN like normal kids. Our communities are full of recreational activities for normal kids. Where can we take our AS kids and just drop them off to have fun on a daily basis??? We are just so overwhelmed that we can't do it alone and there is not a system out there that allows us to keep our kids home. Many of us can't even work and everything for special needs children is so expensive we can't even take advantage of what there is out there. ADA opened many doors for us, but what do we do when we get in? I want Jennie to have lots of things to do like everyone else. I don't just want her plunked in a day room somewhere watching TV all day. These kids need exercise, recreation and friends. There, now I feel better! Janice Daley

Subject: Re: placement

Hi everyone,

The issue of not having the strength to look after your AS child at home seems to elicit a lot of discussion, and I thought I should share some of our experiences, even though our situation may be a bit different. As some of you in North America will know, Finland is supposed to be one of the Scandinavian "welfare states", which "nurse their citizens from cradle to grave". While it is true that we have more mandatory arrangements than you in the U.S., for example (whereas you tend to have more charitable organizations), many things still remain to be fighted for, even if they are available.

Not long ago, parents had only two choices: keep your child to yourself but with negligible outside help, or put him/her in a residential institution. In the last ten years or so, however, both of these alternatives have become recognized as non-optimal. The philosophy now is that it is best to keep your child at home and have some early intervention, babysitting, respite care etc., and also the parents should do some of the rehabilitation (there is a clear cost-saving motive behind all this, too !). In this way, they are both integrated to the society and having the necessary interventions. Yet there does not seem to be any consistent perception what all this means in practice. One major problem seems to be that the legislation is lagging behind these ideas, and because so much really is discretionary, we often have to fight, and we tend to get significant regional differences w.r.t what is available.

Residential institutions still exist, though, but they are mainly intended for very severely handicapped children. We know of a family who have two AS children, and they go to a boarding school. Adults do get placed in residential homes as well.

After this "general introduction", let me go into our situation. We are both working as professional economists, and we think it would make no sense if one of us stayed at home with Liisa all day. On the other hand, if that were the case, it would not take a long time before the one who stayed at home would become completely exhausted. Of course all this depends on what you personally are able to tolerate etc., but I think we know this from what we have felt during longer vacations, and when one of us has been travelling. We have no relatives within a 200 mile (300 km) range.

So here's what we have now:

1. Kindergarten 8 hours a day, Monday to Friday. Also when Liisa starts school next August, she will be entitled to day care for the rest of the 8-hour day. This is a must for us, and, luckily enough, it is also mandatory.

2. Respite care started a year ago. We now have two foster families, and we are lucky to live in an area where this is a top priority. In Helsinki, for example, nothing like this is available, and we know of an AS child (13 yrs) there who sometimes goes to some group home for one week, but the parents say she gets all mixed up there. For the first three times, I spent a weekend with Liisa in the first foster family. (You may ask, why me and not her mother. Well, this is again, like putting her to bed, a matter of her "not taking her mother seriously", you know what I mean.) At 5 years, she had not been separated from us before that, and we were quite worried as to whether she would get some life-long trauma. But I tried to hide myself in some room, or just go out somewhere, so that she would gradually get used to the idea. The problem was that she knew I was available, and she often found me ! Nevertheless, it went so well and the family was so wonderful, that we dared to try a weekend; as I left her there, she cried a lot, but she stopped as soon as my rear lights vanished from sight. The next time was a whole week last summer, and that proved a turning point. Even though she started to cry again, she came back with a different character. She had had fun, met a lot of new people, and we could clearly see that she had become a more independent, big girl, who no longer would hesitate to go to different places without us. So she was a little shy and uncertain at first, but she really has a very social character. It is also important that she has some picture board or calendar where she can see how long that would take - otherwise she would keep on asking about us. Respite care is no problem - she enjoys it enormously ! Our social worker says there is no limit to how much we can use it, and they pay everything, including travel costs, would you believe ! Since February, we have a second foster family as well. At present, we think perhaps 6-8 weeks plus 8-10 weekends per year would suffice.

I think it would be quite important to have an authoritative statement by some professional that respite care is essential for our angels. We have here a short article on AS by a doctor who says that it is necessary to find arrangements in which the responsibility is being shared on a long-term basis. It seems that at least some professionals have taken her at her word. My suggestion really is that someone should consider pursuing this matter over there.

3. A rehabilitation worker has taken Liisa to swimming etc. once a week. This was difficult to get - the excuse was that we needed time to learn signing - and it may be discontinued.

4. Summer camps are not mandatory, but this summer Liisa will go to two camps for 5 and 7 days.

5. We have a national babysitting organization, and it is quite cheap: $4.25 per hour. With a little luck, we were able to find two students of special education who belong to this organization. They have been well trained and just wonderful. Liisa goes with them for 3 hours each weekend (when she's with us, that is), and they are available at other times as well.

6. Domestic help one day a week, costing $30 per day and provided by the local authorities. This may also be discontinued, if our situation is assessed to have become "better".

7. There are at least two other private organizations which could offer their services, but they are more expensive, and mainly because of ample respite care, we have not felt the need to contact them.

Furthermore, we get $566 per month from the state and local authorities. This comes to cover the extra burden, to improve our quality of life, and to pay for the babysitting and other services. To get this money, it was essential to explain very carefully what our everyday life is like, especially that we have to "keep our child under control around the clock". I wrote a detailed 8-page story, and it seemed to impress everyone concerned !

So, that's that - I hope I haven't missed anything. We are pretty satisfied with these arrangements, and we are now really oriented towards some other issues, like education and nutrition. We expect to keep Liisa at home until she is 18, and then she'll have some residential placement.

I hope at least someone found this interesting, even though little of this may be directly applicable over there.

Heikki Taimio, dad to Liisa (6, del-) Finland

Subject: Re: placement

Hi everyone,

Maybe things are different today, but when we were kids (I am 24 now) community respite service just wasn't good. I feel like I need to defend my mother's decision to place my sister out of home. I feel like there is no support for those of us that chose what was best for us. My sister's school was not a cold clinical institution. It was a warm loving place where she got the care she needed and the education to. Of course I wonder all the time what it would have been like if she had stayed at home and all of your success stories somehow make me feel as if we failed as the family of an angel. My mom did what she thought was best. And I'll tell you, she was no less of a devoted parent. She was there every weekend, my sister came home a lot, I saw her a lot and whenver she hurt herself or was sick and the phone rang in the middle of the night, my mom was in the car and at the hospital without waiting for the light of day. (My sister has avery fragile bone condition, we have no idea where it comes from). I understand tere are many benefits of keeping kids at home, but sometimes circumstances don't allow it. Maybe I am overreacting. I have a tendency to do that. I just want everyone to understand that it is not an easy thing to go through and sometimes there is no other choice. I just want to make sure that you all understand all the options and situations.

Thanks for listening. -- Julie Hyman

Subject: Re: placement

Dear Julie,

I really think you are slightly overreacting. Nobody is denying support for you ! But there is no single formula. And you have to recognize that time, country, state, town, severity of symptoms, age, jobs, family situation and what not all count ! From what you have written I've got the impression that your mother made a good decision.

What a pity that you are not coming to Calgary - I would have been very pleased to meet you in person. Maybe in Seattle, then.

Take care,

Heikki Taimio Finland

Subject: Re: placement

julie, and others, I think I really do understand--Katie is getting pretty big now and very difficult for me to handle at those times when she chooses to be uncooperative. Just getting her to the toilet is almost beyond my physical abilities. Certainly neither her Mom nor myself can carry her anymore. I've mentioned several times to my daughter that she needs to think about what she would do if something should happen to me--after all ,I'm 57 and a smoker ( I know, but it is really an ADDICTION for some of us.) I'm afraid Melody, my daughter, is avoiding facing that issue. She works very long hours and travels a couple days a week, so most of the responsibility falls to me and you all know what the stresses are. Thank God for gardening, school summer programs, and this computer. I just keep plugging away at that issue any chance I can and hope for the best!

Deanna

Subject: Lesley's Move

Well everyone,

tomorrow is the day. Lesley is moving into her new group home tomorrow at 5:00. I am feeling the strangest mix of feelings right now. It's not like the idea of her living away is new to me, but I think I am being reminded of how difficult it was for me when she moved to woods when I was 11. Everything is going smoothly so far though. My mom spent most of today moving all her stuff in and setting up her room. I have been getting pictures and stuff ready--I color photocopied all her favorite phots, mounted them on heavy cardboard and laminated them. I am going to hang them up with velcro so that she can take them down as she wants with no harm done. Hopefully it'll work as well as I seem to think it will. I guess I am a little nervous, but that's to be expected I guess. I am taking the afternoon off of work tomorrow so that I can meet them over there and spend the first night with her and then come home around 8:00 or so. I don't know what to expect out of all of this. It has brought my mom and I closer and she is beginning to show a lot of interrest in AS research and ideas which is nice and she has actually given me the responsibility of locating doctors familiar with AS in the central Jersey area, which essentially is her way of saying "I am really thankful for your help and I know you have more resources then I do right now. Teach me, please."

Think of us tomorrow night. I'll let you all know how it goes. -- Julie Hyman

Subject: LESLEY'S NEW HOME!!! (Long, but really worth it!)

Hi everyone,

Well, I just returned home from moving Lesley into her new home and.....

IT WAS WONDERFUL!!!

I am feeling the total opposite of what I thought I would feel. I guess all the visits and overnights she has done in the past 2 months really have made a difference. Lesley seemedso happy, wasn't upset when my mom and I left and the staff I met tonight was warm and caring and playful, and the best thing of all is that they said, and especially the house manager, Carla, they said that their attitude is that Lesley is 21, she understands a lot more than she has been given credit for and they have expectations for her. Tracy, the woman who prepaes the food (which I have to say is really good-the staff eats withthe residents, the same food and all...I even tasted it and it was a heck of a lot better then my cooking!) said she wants to get Lesley used to the idea of helping to prepare meals, even if all that means is watching for a few months first. After dinner she carried her plate to the kitchen and put it in the sink like everyone else. It is so different than woods. It is really like a home.; We "hung out" in the living room after dinner and watched videos and did something me and her have not done in years--We wrestled until we were breathless and our hair was a mess! It was like being at home with her again. The house is really easy for me to get to from the city, which is great. The staff is very welcoming and encourages visits etc. What really amazed me was when one of the older women who has CP, and is slightly verbal said to me "She understands everything you tell her. She just doesn't want listen all the time" I almost cried. It was a beautiful moment to experience. One of the other residents, David, has Cp and is unable to speak. He uses an Alphatalker! The day program and us are in process of applying to medicaid for talker funding and it looks hopeful. I think her being in this environment and observing another person using an alphatalker will help her so much. We had some sister to sister bonding time when my mom was filling out mountains of forms and it was the first time I felt like we truley connected again the way we did as children. At dinner she ate all her spinich, and after the last bite, held out her spoon. I just knew she wanted more spinich and asked her and she handed me her spoon. My mother of course did not think she wanted more, but I said "Humor me" and sure enough she gobbled that second helping of Spinich right up! It's like I am attuned to her subtleties again. I feel so whole and happy. I am so glad all of this has so far come to a happy resolve. The group home provided her with a really nice comforter set on her bed which was touching and the pictures I made for her wall were a hit! The staff went wild over the velcro idea!!! When I got home a while ago, my mom called me and told me how proud she was of me and how happy it makes her to see this relationship growing again. She said she was so grateful for all of my support and everything I was taking care of for her. She seems to being seeing things in a whole new light. Thanks for all of your support along the way. I'll keep everyone posted as to how it's all going and how she is progressing. We have a planning meeting at her day program in 30 days and my mom invited me to attend!

God Bless and be well. -- Julie Hyman

Subject: Re: LESLEY'S NEW HOME!!! (Long, but really worth it!)

Dear Julie,

I am overjoyed at your report on Lesley's new home. It sounds like a place where she can really blossom.

I have been thinking about you and your worries, and I kept coming back to the idea that Lesley is an adult and shouldn't have to be living at a school if she can have her "own" place. This is so much more normal for her, and you, and your mom.

I'm glad you and your mom are feeling better about things, too.

Love, Martha

Subject: Re: LESLEY'S NEW HOME!!! (Long, but really worth it!)

Julie - Wonderful to hear such good news and positive thinking. I'm sure it keeps everyone more hopeful for their kids future. I always pictured a "home" as such a horrible place. Continued good luck to all of you...

Sue

Subject: Lesley, Day 2

Well, I am just thrilled so far. Things continue to go really well with Les. This is the report we got at the end of the day: After we left last night, Lesley got her bath (A thrill of course) and then hung out in the living room and watched TV with everyone else who was still awake. Around 11:30 she voluntarily went into her room, selected a movie and watched it in bed and fell asleep. She didn't budge until 6:30 this morning when they had to WAKE her for school/workshop! She ate breakfast and went to her first day at the day program. This is the best part: Her whole first day (6 hours) was spent with the Speech Therapist for evaluation! 6 whole hours--can you beleive it? The report my mom got was incredible and now that she has heard it from a "professional" she is seeing things quite differently. The ST said that she worked with Lesley and introduced her to the Alpha Talker, which after a half hour of looking at it as a toy, she began to use appropriately! The Therapist strongly believes Lesley is highly capable of using an alpha talker and has endorsed the application to Medicaid! They at the day program feel that she is an adult and they seem to treat her with the respect she deserves. After day program she got home and had a snack and was tired. She went to her room and watched some TV and rested, but they did not let her nap. She hung out with her books and toys until dinner and was not haunting the kitchen. She sat down at the table with everyone else and ate "like a little lady" as they put it. Then she brought her plate to the sink, threw her bib in the laundry and got a bath and played in the living room. The supervisor Carla (who is quickly winning me over!--she went out a bought an extension cord last night so that lesley could hook her TV up in her room right away) said that she did beautifully on her first day. My mom said she heard Lesley laughing in the background, so that's a good sign. I am so happy with the views of the speech therapist. I hope this success continues. Have great nights and hug your angels. All the best... -- Julie Hyman