Home life and values

Housing

Daniel obviously must live at home for the foreseeable future, and his future ability to live outside a home situation is difficult to project at this time. We do know that he seems to be more severely delayed developmentally than are many other children his age with Down syndrome. This might lead you to speculate that Daniel would be best served by remaining in a home situation in which he had 24-hour supervision, but only time will tell.

Favorite Possessions

Daniel loves talking and musical toys, especially the musical instruments. He likes the LeapPad and other electronic toys that let him work on reading, but he is less interested in them than he used to be. His poor fine motor coordination limits his range of toys considerably-that's why he loves the push-button toys that make music or loud sounds and give him the most independence. He'll listen to almost any kind of music, but prefers a lullaby or story tape at bedtime.

He loves almost any kind of books targeted to young children. He'll generally listen to any story you want to read him, but he'll read almost any children's book himself. Make sure that there are lots of books within his reach. His reading ability is approximately at a third grade level.

Sleep Habits

Daniel sleeps in a regular twin bed in the same room as Derek, and he can climb in and out by himself. Daniel usually wakes up around 5 or 6 am, but he knows he must stay in his room until 6:30 am. Daniel can turn doorknobs, however, so he can leave the room if he wants to, and sometimes does (occasionally in the middle of the night).

At bedtime, the adult says a prayer with Daniel, Lizzie, Annie, and Derek. We say any number of different prayers. Sometimes we say the Our Father, the Hail Mary, the Glory Be, or this special prayer (Daniel knows them all by heart):

Now I lay me down to sleep
I pray thee, Lord
My soul to keep.
In the morning, when I awake,
Help me the path of love to take,
And this I ask for Jesus' sake.
God bless Mommy and Daddy 
And Danny and Lizzie and Annie and Derek
And Harry and Jeffrey 
And Mark and George 
And Suzy
And Horace and Wilson and Henrietta
And Sarah and Jack.
Amen. 

He recognizes the names of the people we pray for (his immediate family and his cousins). At other times, we say "Surrender" prayers, or "Praise" prayers, or we recite a bible verse. Elizabeth and Annette can help anyone get comfortable with the nightly ritual.

At the end of the prayer, the caregiver and the children each add five other people to be blessed, such as other family members and friends, government leaders, or people that we interacted with that day.

After the prayer has been recited, Daniel (and Derek) are led to the bathroom, where they get their teeth brushed, and then to bed for a big goodnight hug and kiss. The caregiver quietly plays one of the lullaby or story tapes in the tape player on his dresser and closes the door before leaving. We've recently begun experimenting with having just Derek go to bed at 7:30 with the other three remaining in their pajamas until 8:00 when they go up to bed. The girls can tuck Daniel in themselves.

Daniel nearly always sleeps through the night. On rare occasions, Daniel's nose is clogged and he needs a dose of liquid Children's Sudafed. Although he can chew a tablet during the day, when he's sleepy in the middle of the night you might prefer to use a liquid decongestant with a dropper that can be squirted into his mouth. When he wakes up with his nose clogged, he sometimes has a ghastly wheeze that can wake up the entire house. Dr. Sherman has given us a prescription for Albuterol, which we keep in the kitchen for just this problem, but we don't know how well it works.

The best thing to do in that situation is to bring him to a remote part of the house and just watch TV and hold him upright until his nose clears. At that point he'll go back to sleep and usually sleep through the night. Unfortunately, it takes as long as an hour for the decongestant to clear his nose so he can breathe normally, so it's smart to prevent this by giving him a decongestant before bed on nights when he is clogged. Thankfully, this happens only one or two nights a year. You might think that the steam from a shower might help clear him faster, but we've found the hot water runs out before it does any good.

Leisure and Recreation

Structured Recreation

Each summer, Daniel attends summer camp nearly every week at the Duck Pond on Ridgewood Avenue in Ridgewood. (You can pay for the camp from Daniel's trust account or try to get it covered by the DDD, as described in "Services and Benefits" on page 53.) To register, contact Jennie Nuzzo at 973-838-5839 or call the camp at 201-652-1755 in March of each year. Mrs. Nuzzo's address is 14 Gormley Lane in Butler, New Jersey. A year-round Saturday program, Camp Snowflake, is also run by the same organization, but we haven't felt Daniel needs that yet. Camp Snowflake is generally for the older campers.

Also, each summer, he attends sleep-away camp for one week at Elks Camp Moore on Union Road in Haskell, New Jersey (summer mailing address PO Box 375 in Pompton Lakes, New Jersey, 07442). The camp is wonderful and it's free! All costs are paid for by the Dumont Elks, who sponsor Danny each year. You should contact the camp around March each year to lock in Daniel's spot for the summer. All campers are limited to one week each summer. The camp's winter address is 2614 Audrey Terrace in Union, New Jersey 07083 (phone 908-686-6011).

Daniel also loves his "Special Swim" lessons at the Bergen County YMCA in Ridgewood. Daniel has made progress in basic water safety, he knows how to dog paddle, and is learning the basic crawl stroke. We're confident that he will learn to swim by continuing these lessons. Daniel absolutely loves the water, but you need to supervise him extremely carefully. Just this year, he has started to swim well enough to jump from the diving board into the deep end of the pool and swim safely to the side.

In late fall, Daniel participates in Dumont Biddy Basketball, held in the gym at the Orchard School. This is a highly structured activity for any disabled child and (next to swimming) is Daniel's favorite activity of the year. For more information, contact Jim Michaels (201-427-6617) or Dottie Lewis (201-444-9320).

In the winter, Daniel participates in another special basketball program in Oradell, which he also enjoys. It's not as structured as Biddy Basketball, but Daniel really enjoys it. For more information, contact Samuel Hanson at 78 River Road in Saddle Brook, New Jersey.

Daniel has just begun a dance class for special needs children, called Meaningful Movements, each Thursday during the school year. For more information, contact the program's director, Michele Campbell (201-612-9725). The program is located at 6 Godwin Plaza, PO Box 294, in Midland Park, New Jersey.

During 2001, Daniel roller skated each Monday afternoon on the Montvale Roller Rink through the New Jersey Special Olympics-it's free for all disabled children. Daniel liked it for awhile and might have participated in roller skating in Special Olympics, but he seems more interested in swimming and basketball. For more information, contact Joyce Van Deursen at 973-427-4532.

In the fall of 2000 and 2001, Daniel participated in a special soccer program located right at Valley School. The Dumont High School girls' soccer team provides coaching and they are wonderful, but Danny seems to like basketball and swimming more.

Daniel participated in Challenger Baseball in Oradell in 2000, but we don't think he's ready for baseball yet, so we may try again in a couple of years.

Unstructured Recreation

Daniel's favorite activities are:

• swimming
• reading-make bookshelves accessible-Daniel loves to look at books and to be read to and reads children's books himself
• listening to audio tapes of music or stories
• watching TV or videos (we limit all of our children to just a couple of hours of television each week)
• playing computer games-Daniel can use the mouse and can handle some simple game programs
• looking at family photo albums-Danny loves to look at them over and over and sometimes asks for them
• playing with his electronic toys
• taking family bike rides-Daniel rides in our Burley bike trailer and enjoys every minute of them
• just about any activity with a ball

Some people with Down syndrome have a tendency to be overweight, and while Daniel's showing no sign of that, he does sometimes prefer sedentary activities and must be encouraged to be more active. Enticing Daniel to play outside, take walks with you, and play sports is very important to get him into good exercise habits.

Vacations

Daniel enjoys the annual summer family vacation to Spruce Lake Pennsylvania for the Joni and Friends (JAF) Family Retreat. JAF (818-707-5664) is a Christian charitable organization that sponsors a week-long retreat for families with a disabled family member. They provide a volunteer to help with Daniel and have special programs for parents and siblings. It's a lot of fun! It's a great break for our family each year, the kids love it, and it's not very expensive.

There aren't any other vacations that we take on a regular basis.

Religion

Faith

Daniel is Roman Catholic and is a member of the St. John's R.C. Church in Dumont.

Clergy

We switched in 1999 to St, John's from the Church of the Ascension in Saddle River. Our pastor, Father Jim Luchese, knows our family, but doesn't know too much about Daniel. One parishioner who knows Daniel and could provide help is Gregg Lindell (201-444-5453).

Participation

We attend church each week and Daniel always comes with us. We usually go to the 5:30 PM Saturday Mass or the 9:30 AM Sunday Mass. At the 9:30 Mass, they usually have a "Children's Church" at that service, and Elizabeth and Annie lead Daniel and Derek to another room to participate (and they return on their own to where we're sitting-usually in the front pew of the left side).

Daniel sits with us in church. Daniel is usually very well-behaved in church and loves listening to the music, often joining in. We give Daniel a dime to drop in the basket (Elizabeth and Annie take theirs from their $1 weekly allowance).

Daniel definitely understands who God is and knows how to pray-we call him our family prayer warrior. We always say prayers with him at night and Danny often is the first to pray at meals. We make sure that we explain the various parts of the Mass to him (as we do for the girls). He made his first communion in April with the rest of his second grade class. He needs a bit of help staying in line going up to communion and needs a little prompting to hold his hands properly and return to his seat.

None of our children participate in the parish religious education program, with the church's blessing, and we are listed as "home schooling" our children.

It's extremely important to us, more important than any of our other wishes, that all of our children (including Daniel) have a strong Christ-centered upbringing. The kids are comfortable with their Catholic faith, but it is more important to us that their lives be based on faith in God than that they be part of any particular Christian denomination.

Family Time

Almost every day at breakfast we have our own small worship service called Family Time. Family Time is a way of gathering as a family to sing songs, to pray, to have fun, and to learn something. The kids really look forward to it. Because we keep things simple, it's not a burden on us to have big plans.

In the past, the family gathered each weekend for about 30-45 minutes, but we've started having Family Time at breakfast each morning, and sometimes at other meals as well. We built up gradually to this kind of frequency-you could do it that way, too. Family Time sometimes starts with the whole family singing a hymn or, during the season, a Christmas carol. At this point, we have one or more topics planned. We might discuss a problem in the family and pray about a solution. Or we might teach a lesson about God. We frequently discuss current events-we spent a lot of time on the aftermath of September 11. No matter what it is, it's kept simple, short, and (if possible) fun. The point of family time is for us to intentionally teach our values.

After our activity, we may read a short selection from the Bible, if one is appropriate for our theme. After the reading, we usually go around to each person so that they can say a short prayer. It could be to ask God for help with something, a "praise item" for something nice that's happened, or just about anything. Daniel, Lizzie, Annie, and Derek all can participate in this (although we sometimes don't understand all of Daniel's prayer between the opening "Dear God" and the closing "Amen").

Start to finish it lasts about 30 minutes each day to match a young child's attention span. As the children mature, we may make it a little longer and more of a devotional, but the great thing about Family Time is it can be whatever you want it to be. Nancy and Mickey have participated in our Family Time and hold them with their families, so they can help you with any practical questions you might have. Mostly it's a way for young children to spend time with God and their family.

Kid Time

In addition to Family Time, a couple of times a month we have a "Kid Time" where at least one (or sometimes both) parents spend time with just one child. It lasts from 15 to 30 minutes for each child, usually with an activity that the child really wants to do. For Daniel, it is often the parents reading a book to him or doing some reading or math drills.

We always give Daniel time to talk to us about anything he wants to discuss (which can be rather comical-lots of discussions of hot dogs and Granny's pool). We also bring up anything we want to talk to Danny about, whether it's a behavior issue or preparing him for an upcoming event on the calendar ("On Tuesday, you'll be going to Nick's birthday party..."). We always end by blessing Daniel with holy oil on his forehead and praying over him.

We have been changing Kid Time to focus more on chores in the house (with Sharon) and other one-on-one activities with me. It's important that Daniel participate in family chores just like the other kids-he needs to live up to our expectations and he needs to feel that he is contributing to our family.

Rights and Values

We expect that Daniel will be treated with respect by his caregivers and that they should try to accommodate his wishes whenever that is safe and prudent for Daniel. It is very important to us that Daniel is held responsible to appropriate disciplinary rules-Daniel has enough differences without adding inappropriate behaviors that would further stratify him from others. We expect that caregivers will keep Daniel free from harm, pain, isolation, physical restraint, abuse, and unnecessary medication.

Other

Daniel has a deep love for music. Daniel needs to listen to some music each day, and would like it on constantly if he had his way. (A therapist once explained to us that some children with Down syndrome use music to better organize their thoughts.) Daniel should be encouraged to expand his musical skills as he grows. In addition, when Daniel is in pain, music is very soothing for him-if he falls and hurts himself, hugging him and singing softly to him helps him feel better the fastest. Music (especially his children's tapes) can also cheer him up if he's sad for other reasons.

In the past, Daniel was unusually sensitive to loud applause at a show or other event. He frequently cried when subjected to loud applause and needed to be comforted. He may have outgrown this, as we seen this behavior only a few times since 1999.

Although it's still a long way off, Sharon and I sometimes imagine what Daniel might be like when he grows up. Our hope is that he lives close to a town and to a bus stop that allows him to get around alone or with friends. (Our house is within walking distance of the stores in Dumont and several bus stops.) We'd prefer that he be part of the Dumont community, since so many know him already. We're not sure whether Daniel could live on his own or in a group home, but we hope that he can be taught to take day trips on his own to a well-structured job or volunteer work, to visit friends, or to do local shopping (like the mall).

It is unlikely that Daniel could learn to drive a car, and many people with Down syndrome have trouble balancing on bicycles, so walking and using the bus would probably be the best way for him to travel. We'd like Daniel's caregivers to emphasize the skills needed for this level of independence for Daniel. Obviously, as Daniel gets older, it will become more apparent what he can do, but this is what we're imagining now.

We imagine that Daniel would take to certain kinds of jobs. His love of books and attention to detail might make him a fine library assistant. His patience with others might make him a good aide for children in a structured program (as long as he had supervision). There is a raging debate as to whether wards (people under guardianship) are eligible to vote. The New Jersey state constitution prohibits "imbeciles" from voting, but a court case (Todd v. Carroll) may change that. Depending on where the registration occurs, cognitively disabled adults may already be voting. In many places, anyone capable of filling out the registration form is allowed to vote. We'd like Daniel to register to vote when he turns 18.

Despite Daniel's cognitive delays, we think that Daniel can become an intellectual-not because he will have stored so much information, but because he can think about life. . Intellectuals consider possibilities, take less for granted, and like to learn.