A Life Delayed

Play all Day

kathycooley — Thu, 22 Sep 2011 19:14:13 +0000

Years ago moms would routinely tell kids, “go outside and play.” Today, many people have fears and don’t send their children outside alone. Because of Philip’s special needs, he’ll probably never be able to go out on his own. Helping him to enjoy outdoor activities can be challenging. A walk around the block is standard, but once we round the corner and are back at home, Philip is ready to head back inside. How can I entice him to the backyard for more play? He does not have the creative ability for imaginative play.

Getting your special needs child outside to play is sometimes easier said than done. Everyone has his routine and some routines become established out of convenience. It is so convenient that my special-needs son loves to spend hours on the computer. Playing outside requires some coaxing, but we all know the physical benefits make it well-worth the effort.

One of the most effective activities for engaging Philip in outdoor play is a game of tag, or as we call it “I’m gonna get you!” There are visual cues to the game – as I hold up my wriggling fingers and creep slowly in his direction he knows it is time to run. He also knows from the smile on my face that it is a game and should be fun. Other games that are highly visual help Philip to join in the fun. Large, colorful flying rings and beach balls are great. The family dog running after toys encourages Philip to throw.

One of my favorite motivations for Philip is his siblings! Being included in the fun with his big brothers and sisters encourages him to play for the longest amount of time. This is not so different from kids who can run and play and imagine without limitations. They too love the attention from their family members. So the best situation is for the whole family to play together, get dirty together, and encourage one another to get out into the great outdoors.

Can We Find Some Diapers Please?!

kathycooley — Sat, 30 Apr 2011 21:01:48 +0000

Philip has been wearing Pull-ups for about 8 or 9 years. I’m not sure how long. Thankfully he is thin and has been able to get away with this. Now, however, the end is in sight…literally. His little “almost 13 year old, very skinny bottom” barely (I keep accidentally choosing these puns) fits into the pull-up. They are, however, the best design for a grown child who often will use the toilet, but feels no need to do so consistently (mainly because of neurological impairment.)

I have not been able to find this same design in a larger size. The long strips of Velcro on both sides makes it easy to remove a wet or soiled diaper without removing pants, socks and shoes. Putting on a new one is just as easy because of this feature.

There are diapers with the nice cloth-like feel, but the design is so diaper-like they are difficult to put on. The elastic around the waist and legs make it fit so well. There must be something out there. If you know of the right product, please let me know.

Some Simple Fun

kathycooley — Fri, 07 May 2010 02:07:08 +0000

I was glad to get Philip out tonight. It is not easy, but it is so good for him to have a change of scenery. I brought him to a family fitness night event at my school. It was a particularly good event for him because a school is a familiar setting. He has undoubtedly played volleyball with a beach ball before, and he was excited to join in. He really liked the blue platforms used for step aerobics. He just jumped on them.

I was happy to see the other children, many of them my students, reach out to Philip and say hello. I have spoken of him in class, so the children were so responsive to him. I don’t know how much it helps Philip, but it sure helps me when people reach out and together we say, “this is a dear child and together we will care for him and love him.”

One of my favorite parts of the night was in the beginning when there were a few brief speakers. When something humorous was said and everyone laughed, Philip joined in loudly. I knew he was having fun.

siblings of the delayed child

kathycooley — Tue, 06 Apr 2010 03:23:42 +0000

I am so thankful to have all my children. Philip, especially, teaches us all so much, mostly patience and compassion. He also trains us not to be self-centered. Last week the children were on spring break so we took a drive. This time it was just Philip, Allison, Ben and me. We drove down NJ to Cape May, took a Ferry to Lewes DE and saw the ponies on Assateague Island.

Allison and Ben were helpful, kind and loving with Philip. Road trips are never easy, but when you have to deal with special needs on top of everything it can be really trying. It really made me happy to see their genuine desire to entertain Philip and make sure that this trip was fun for him. They played with him in the hotel pool and enjoyed his smile so much. They loved taking pictures of him in the car and did everything they could to get just the right smile out of him. They really enjoyed Philip’s delight over the ponies and couldn’t wait to tell dad how much he had enjoyed them.

Allison and Ben are the closest in age to Philip. They have some of the most trying times with him, but they are also gaining a wealth of maturity and compassion from caring for him and growing up together with him. All my children are precious.

Seizures

kathycooley — Thu, 03 Dec 2009 01:58:39 +0000

Philip had a seizure the other night. I don’t really get upset or anything. I suppose that I’m just used to it by now. The anti-seizure medication helps, but he still has them occasionally. I try to find common aspects between the days that he has them. Sometimes it is a day full of activity. The last two times they were days that he had no school and he spent a lot of time on the computer. He plays all educational games, not the fast moving seizure inducing kind of games, but it does cause him to stay at a high energy level for a long time.

The majority of Philip’s seizures occur just after he has fallen asleep. It seems like one way that his body has of relaxing is by having a seizure. I often massage Philip at bed time to help him relax. When he has a seizure, I apply pressure to his thumbs and that calms it almost immediately, not completely, but it definitely shortens the length of the seizure.

School, PTA, Swim Meets, Homework and Oh Yeah; Dinner! “With Our Busy Schedules, What Are Your 3 Valid Tips for Getting Dinner Ready in a Flash?”

kathycooley — Tue, 06 Oct 2009 01:31:23 +0000

We’ve been back to school for almost a month now. I am amazed that after having kids in school for 17 years, I still forget just how hectic life gets once everything is in full swing.

This year two of my children, including Philip are in new schools and the schedule is much earlier. Philip is on a bus before 7:00 and he is the last child to leave in the morning. Things don’t get any easier after 3:00. There are swim practices and meets, pick ups from other activities, night time PTA meetings and fundraisers and my own school obligations. (I am teaching full-time.)

We have a full schedule of church meetings during the week and dinner is something we still do. We don’t always get to sit down together any more (though we have for the last few nights – victory!) but the kids will always make their way to the kitchen and expect food.

Philip has some food allergies and does not do well with prepared food which contain additives and preservatives. Mostly, I cook. My tip for quick meals is cook often. The more you do it the easier it gets and the more it becomes second nature. Chopping up an onion and a few potatoes and throwing them in a pan with a little oil is quick and easy. I threw in some leftover chicken the other night and called it dinner. My son loved it so much I even saw a facebook post about it.

My second tip is keep it simple, not just the dishes themselves, but the number of meals you regularly prepare. Know what your family likes and rotate. Shopping becomes easy, you know what ingredients you have to have on hand. You don’t need to look at a recipe because you make the dish often.

My third tip that keeps my simple rotated meals tasty is two homemade items that I make ahead on a Saturday and keep in the freezer – sofrito and pesto. Open a can of pinto beans or red beans add a cube of sofrito and some tomato sauce and you have quick spanish beans to serve with rice. Add sofrito and tomato sauce to ground beef and you have picadillo which goes great with the rice and beans. I can prepare this in 20 -30 minutes. This is one of Philip’s favorite dishes. I always make extra because I also send hot food to school with Philip for lunch every day because of all the salt and preservatives in school lunch food. The pesto I put over plain pasta or tortellini, usually with a little broccoli thrown in.

Just cook! You’ll save money and it will get faster and easier the more that you do it.

You might want to share your tips for quick meals:

See link under blog roll to the left for details of the Samsung blogging contest.

Taking Care of Special Needs on Labor Day

kathycooley — Tue, 08 Sep 2009 01:49:01 +0000

Today we went to the Labor Day BBQ without Philip. I remembered the last time that I was at this family’s house. I remember thinking that it would be fun to have Phlip out in the yard, kick a ball around… but that did not last long. There were steps into the house and down to the basement and steps were just too intriguing. I chased and followed, he ran up and down, in and out touching plates and people and food- other people’s food. I stopped him from stepping on, breaking and spilling things. Sometimes there is no way to turn Philip’s motor off. I was exhausted after about thirty minutes.

Today was quite different. At home with his babysitter, Phlip played in the sprinklers, went for a walk and played his beloved computer. I sat, talk, ate peacefully and enjoyed watching my other children play and socialize. He was happy. I was happy; and the other kids were much happier. Taking care of each other doesn’t always look exactly the same every time.

Road Trip Woo Hoo!

kathycooley — Mon, 31 Aug 2009 15:21:00 +0000

Traveling is never easy with kids. With special needs children it can be…difficult?…trying…challenging…scarey…enlightening?! Not sure what the correct adjective is. Returning home from driving my oldest to Philadelphia should have taken just over two hours. Traffic was heavy but an accident made things much worse. We were stopped dead on the higway for more than 20 minutes. Philip’s cds had played several times on the way up and part of the way back. People were getting out of cars – never a good sign. The way Philip runs around I didn’t think I should let him out to stretch. I opted to talk to him. I apologized to him, “I’m sorry, Philip, looks like there was an accident. We are stopped. I can’t go. All the cars are stopped. See, look, nobody is moving. We have to wait.” He looks out the window, looks back at me. Because he cannot speak it is never clear how much he understands. I felt that I must try to explain and it seemed he did his best to understand. He was not fighting to get out of his seat. He seemed to accept the fact that he must sit there. He understood. How much is unclear, but if I don’t attempt communication then he has no chance to understand.

Several times on the ride home I pointed out things to Philip, sometimes he looked, sometimes he did not. He slept part of the way home, but awoke with a great deal of energy. I pointed out the city skyline to him, “look at the lights! That’s the city. We live in New York City. See the lights!” There was little response, but I was glad to have a companion. As I put him to bed that night I thanked him for keeping me company on what had turned out to be a five hour drive. “We had a long drive today. Remember, all the cars were stopped. We were waiting and waiting. You were a good boy, Philip. You took a nap; you sang songs and looked out the window” Philip hugged me. I think he realized that we had been through something together and that I appreciated him.

What to do with Philip today?!

kathycooley — Tue, 18 Aug 2009 13:31:47 +0000

It is just me and Philip today. I have been looking forward to a zoo trip, but It is going to be another hot day. The beach is a lot of work considering he may be miserable and we’ll have to come right home.
Let’s get out early while it is still cool and hit the playground – simple. If he does not like it, we leave. I need to pick up a few things at the store- Philip can help. Then we’ll hit the bookstore for a new book in the cool AC by mid day. Back home to the backyard pool to cool off. Sounds like a plan. Uh Oh, here he comes.

Back to School Assalt

kathycooley — Thu, 13 Aug 2009 02:49:04 +0000

I am not so ready to jump on the back-to-school bandwagon. Every year at this time I resent the flood of back-to-school marketing which arrives around the end of July, beginning of August. My summer is just getting into full swing by then. Since school doesn’t let out until the very end of June in NYC, and this year doesn’t resume until September 8th (for teachers) September 9th (for students), I still have a few prime weeks left.

Okay, I admit that I did two weeks of planning today, but that was just to get things out of the way so that I can enjoy the last few weeks.

Philip’s special-ed program is year round so his official three week summer break does not begin until this weekend. I have plenty of tips and ideas for back-to-school, but right now I just want to think about the beach and the zoo with my special kid.