Life Is a Big Classroom

John is 4 now and continues to learn so much from his family and the preschool that he attends 3 days a week. He enjoys hanging out with his brothers and sister and trying to keep up with them but he also needs the structure of being in a classroom with other children his age and learn how to follow the rules of the classroom such as staying seated, sharing, treating others nicely, etc. Although John is delayed, he can learn and learn at his own pace and part of raising a child who is delayed is learning to adapt to their schedule. This has been one of the most difficult things for us to learn probably because we are so programmed to one schedule for everyone.

Some of the things that I have seen John learn these past 6 months is jumping, riding his foot-powered car, expand his appetite for new foods, obey, fall asleep in his own bed, clean up after himself.

John has been going around the house jumping so much that we decided that the boy needed a trampoline to help him. So we got him one of the small trampolines with a net enclosure that he can use all he wants. He loves going to jump. Right now, he can walk on the trampoline without falling which is a great way to help improve their balance while building up the muscles in their legs.

Learning to make his car go by doing the walking motion has really helped build muscle in his legs. He still prefer to make the car go backwards which is easier, but he has learned to make the car go forward and can keep it going for about 50 feet before stopping.

We have been consistently introducing new foods to him. Some he will try and some he will not. Sometimes we try to bury it in other foods that he likes. We are finding that often he likes it if he doesn't have a chance to see the food first.

Falling asleep in his own bed has been a difficult task and has not differed that much from our other children. This has been as hard for Dad and Mom as it has been for John. It is much easier and more fun to hold him while he falls asleep. The warmth of his little body and how he molds to your body just makes you want to hold him. But we are learning that he has got to learn to fall asleep in his own bed. So after occasionally letting him cry himself to sleep, he will now ask to go get in his bed if he is ready to go to sleep.

Just as I have said before, I am learning that these children have the capacity to learn just as our other children do. They just are on a slower schedule. Often times, how our children perceive themselves depends upon how we as parents accept and adapt to their schedule.

I hope that you and your family are able to see your little Ds child as a blessing and not a hindrance. Yes, they do slow you down at times but sometimes we need to stop and ask ourselves why are we in such a hurry? Slow down and enjoy your little one, they will get it and you will learn a valuable lesson in the mean time.

Here are some pictures of John and two of his favorite things: playing cars and his dog.

 

 

Pictures of John

Here are pictures of John enjoying his summer. This summer has been a time of learning and growing for John. His vocabulary has increased, he has developed a taste for different textures, and he is asking to go to the bathroom with succuess.

He has been working with us on learning his colors by way of puzzles, flash cards and by quizzing him about the objects that he identifies such as tractors. He loves tractors and has even learned to say "John Deere".

So below are some pictures of John's summer:

Self-dressing

It is a skill that we take for granted but one that doesn't come natural for our children with disabilities. With one of our goals being independence one day, my wife and I have been working with John on multiple skills and learning how to dress himself is one of those skills.

We began about 6 months ago with teaching him how to put his shirt on by putting his arms through the shirt first and then slipping it over his head. Once he got used to this, we moved into taking his shirt off. This was a little more complicated because it requires more steps. And that is what we did: break it down into steps for him. We still have to remind him of hand placement in order to pull his arm out of the sleeve, but other than that he is making positive steps in being able to dress himself.

Part this skill is learning to put away the clothes you take off. In this case, he was putting his pajamas back in his bed so he could wear them again tonight. He doesn't do this automatically, but then again neither do my other children. I tell him to pick his clothes up off the floor and take them and put them in his bed. He sometimes obeys and sometimes he doesn't. When he doesn't, we just take him by the hand and have him pick up his clothes and we then lead him to where we want him to put them up.

As for the shorts/pants, he can get them on. He sits down on the floor and slides them on, pulls them up past his knees and them stands up to pull them up. It is much easier for him to pull up the front than it is the back. But this is a work in progress.

I often catch myself starting to do this for him, mainly because I 'think' that my life should be so rushed that I don't have time to wait for him. But then I think of how we need and want to train him to live independent one of these days, and that doing things for him is not treating him fair.

Self-dressing

John Loves Life

John's Pool-time (4 yrs old)

John enjoys life and laughter. We get a lot of enjoyment from seeing his enthusiasm and excitement for the simple pleasures of life. Let me encourage you to lay aside what the diagnosis, evaluations, and other people say about your son or daughter and go out and enjoy them for who they are.

What's the Difference?

John will be 4 at the end of this month and we grow more in love with him every year that we have him. John had taught us all so much about life and relationships that we couldn't imagine our lives without him.

John is progressing well and making friends. He attends daycare 2 days/week with non-Down syndrome children and makes friends and is learning well. He now can identify 3 primary colors without being prompted and is making progress on the potty chair. Although he still wears diapers, he manages to keep them dry most of the day.

His favorite foods are pizza, corn, green beans, greens peas, apple sauce, chicken, grilled cheese and french fries. However his appetite for other foods are increasing. It used to be difficult to find something that John would eat, but now it is difficult to find something that he won't eat.

His favorite activity is to swim in his pool, play with his hotwheel cars, and ride his pedal car. He loves the water and has learned to put his face under the water and has a great time.He is also learning to play by himself and will sit in his room and play hotwheels by himself. He has also learned reciprical gait in riding a pedal car. When he first began riding this, he found that it was much easier for him to push the car backwards than it was going forward. But after working with him, he has now started to use reciprical gait pattern to push the car forward. Pedaling backward uses a childs hamstrings or back part of their thigh, while pedaling forward uses their quads or front part of the thigh. This is common when there is a weakness of muscles.

Due to the weakness of muscles, John has difficulty doing some things that other children his age are able to. But we try to keep him active so to use his muscles. His activities include going for walks in the neighborhood with Dad and Mom, riding his pedal car, jumpling in the pool, and I also have him do situps periodically during the morning and evening. Keeping him active takes more effort from us as parents as he migrates to the television and puts himself in a Disney movie if we don't keep tabs on him.

John is a great kid to have around. It has just taken us awhile to learn that he is on his own schedule of learning and there is nothing that we can do to change that schedule. And the more we try to rush things, the more frustrated that we will stay. So to all you new parents of Down syndrome children, just relax and enjoy them. Keep challenging them but don't panic when they don't learn it at the age other children learned it, they will. And don't let anyone tell you that they can't.

Potty Training

We are and have been working on potty training with John for a about 6 months now off and on. It is easy for us to loose interest when he looses interest and doesn't respond that way we think he should. It is difficult enough with a child without any delays but it is more difficult with a delayed child.

But we are learning that no matter how much we push, John has his own timetable and we are probably not there. Yes, he knows how to hold his bladder and he goes when we take him (most of the time), but he will not ask to go. And when we tell him to tell us when he needs to go and to not go in his diaper, it doesn't seem to phase him. It doesn't really bother him to wear a wet diaper. So we keep sitting him on his little potty chair and keeping it fresh in his mind so he can associate the two. And when he is ready, he will learn to initiate going to the potty. Until then, we have a 4 year old who in content in wearing diapers which is more difficult for us than for him.

I guess if we were to honest with ourselves, that is really the issue - having a 4 year old wearing dieapers. Looking back, it was easy to grow impatient as our other children met the different milestones. But I believe it is more difficult with John because John plays by his own rules. Children with Down syndrome are on a different schedule about reaching milestones and that schedule usually is slower than what we think it should be.

So that lesson that we have and are learning is that we need to be patient, but yet continue teaching and challenging him to learn new skills. Keep challenging their minds and abilities, but do not give up when they don't get it easily. Hang in there with them. What and how they learn from us as parents in their younger years are the building blocks of what lies ahead for them.

It's Been Awhile

It's been awhile since my last post and many things have happened for us that is worthy of sharing. As we continue this journey into the world of Down syndrome, we remain hopeful and optimistic for John's developement. John has continued to surpise us with his abilities but on the other hand, some things are still difficult.

John is now 45 months old and while he is growing in his abilities, it is easy for us to sometimes focus on the abilites that he doesn't have. We try to maintain our focus on helping John be the best that he can be by challenging him to learn new skills and ignore the voices that tell us that he can't or won't be able to. At this point, we are very thankful for his abilities and continue to work with him on the ones that he can't.

Among his abilities for which we are thankful are communication. It took him a while but John has broken out of himself. He calls Mom, Dad, all of his siblings, and his friends at daycare by name. He tries to say everything he hears which is good and bad, but mostly good. He has become a very expressionistic little boy. And while some of the words are'nt easy to understand, he has learned how to get his message across. John is in Speech Therapy 2 days/week and while going to ST has helped, it is also helped that John goes to daycare 3 days/week with children that don't have Down syndrome and the fact that he has 4 siblings that read to him and practice flash cards with him.

One of the things that John loves is watching our collection of old Disney VHS movies left over from when our other children were small. He has learned how to work the VCR without help and unbeknownst to us, he knows the title of each video and calls them by one of the characters (i.e. he calls "The Fox and the Hound" copper).

There are many abilities that our other children were able to perform at 45 months that John still has not mastered. But we choose not to dwell on what John cannot do and focus on what he is able to do and to teach him those skills that he is lacking. This attitude is not easy and does not come natural for us but when we are able to maintain this focus, we are all much happier.

Another very important ingredient in John's growth though is our faith in Jesus Christ. We know that John belongs to Him and there is a plan for John's life. We pray for John and teach him that Jesus loves him very much.