Us v. Them?

Have we transitioned into a society that is non-accepted and misunderstood. Was I a part of such a world that moved so fast that people with special needs (autism, Ds, CP, etc.) and their parents were viewed as something of an oddity. Unfortunately I believe that I was a part of that world and that that world still exists. But fortunately, God has seen fit to bring me into a world where life operates at a slower pace.

Growing up, I knew kids with special needs and their families and as a Therapist working with special needs kids, I knew the parents and before I had John, I often wondered why these parents seemed to have an attitude of "me v. them". They seemed to operate from a point of view that the world was against them and they had to scream to be heard.

Since John has come into my life, I realize what these parents felt like. It is almost as though you pass through a curtain into an invisible world that is very misunderstood much less tries to be understood. And to worsen matters, the Bureaucrats in charge of both worlds belong to the other side - the side that doesn't care to understand our kids and is quick to label them.

Watching the movie, Radio the other night with my family and being able to see this issue from both sides made me stop and think that we sometimes do live in two different worlds. This movie is based on a true story and the reenactment on screen truly parallels life.

The fact is having John has caused us to change our lifestyle and some of the friendships that we have/had. And sometimes it can be lonely thinking that no one knows or cares to understand of what your life is like. But I have decided that it is all worth the sacrifices made to be able to say that I now live in this world of special needs. For it is not until John came to us that I have truly begun to see the true meaning of life and that it is not about money, houses, cars, jobs, power, etc, but it is about love. I thank the Lord that He has chosen to teach me this lesson. Although the method is difficult, the lesson has and will forever change my life....for the good, I'm sure.

My attitude is not me v. them, but one of pity for those who have not taken the opportunity to see and understand this lesson. And judging from the fact that 9/10 babies with Ds are aborted every year in this country, the opportunities have been offered to many people. You don't know what you are missing...there is another world out there and it is more beautiful and satisfying than the rat-race in which we all feel trapped.

The Latest on John

Yesterday we took John in to weigh him just out of curiosity because we knew that he was feeling heavier and looking pudgier. He weighed 14 lbs. 11 oz and was 24 1/2 inches long. We have been feeding him solids on a daily basis but were real sure how big of a difference on the weight that would make - but evidently, he is gaining from it. We were real pleased with his weight gain.

Speaking of solid foods, we are trying to feed him twice daily #2 baby food. It varies from day to day as to how much he gets or how interested he is but I try to make a habit to offer it to him once in the morning and once in the evening. My goal here is to give him practice with the spoon as much as possible. I also try to schedule these feeding sessions about an hour after he has nursed or taken a bottle. John's preference is the bottle or nursing (when available). So when we try to feed him solid foods when he is real hungry, he gets frustrated quicker with the spoon. But we are still using a normal depth baby spoon to feed him and his menu consists of carrots, sweet potatoes, rice cereal, and mashed up bananas (sometimes).

John continues to progress with his therapy time with Dad. We are currently working on sitting and bearing weight on shoulders in side-sitting. We also do some standing in place to let him bear weight through his ankles - you just have to make sure that their ankles are in a neutral position when they stand (not let them stand on the inside or outside of their feet). We continue to have play time on his back and work on reaching and playing overhead and reaching and playing with his feet. We are finding that the more time he has on his belly, the more he is able to figure out on his own of how to move and reach for those play toys we use to facilitate the movements.

He continues to charm wherever we go. He seems to have his own fan club at church and school that really enjoy holding and talking with him. We have a lady that often keeps him 1 day/week for us in her home. It is very exciting to me to see and hear how she loves John and is very surprised by his abilities to communicate and move. Prior to keeping John, I don't believe she had any knowledge of Down syndrome except maybe some negative things heard from the various forms of media. It really makes me feel good when she gets excited over him. It's like she is surprised that he can do those things. People in general get a real slanted view of Down syndrome; I know that my preconceived ideas were shattered. It makes me wonder that if more people knew the abilities of these children, would there still be the high rate of abortion there is now. That is difficult to say. But I'm so glad that my friend/babysitter enjoys him.

John continues to sleep through the night about 7 hours at a time. This has been such a great help to Joy and I as it is hard enough trying to get to bed on time with the other 4 and then waking up at 6:00 every morning so that we can get ready and have a good breakfast to get out the door on time. So an uninterrupted night of sleep is a blessing and we are thankful.

We are thankful so much for John in every sense. He has really been a content and healthy baby. And to see the way that others (even ones that have had no contact with Down syndrome before) have interacted with him has been a great gift to us. We feel that John is truly teaching everyone that comes in contact with him.

Thank you all for your readership. It encourages me to see those of you who have visited (even if you don't comment). It has always been my goal to be able to encourage and help others that share this journey.

A Little Encouragement From the Peanut Gallery

I have been providing John's physical therapy since birth which gives me great satisfaction for a lot of reasons. Some of which are the bond that we have and I have the satisfaction of teaching him and seeing him learn new things. I often blog about what John and I are working on and his progress which I really enjoy sharing with you all. It gives me a sense of contributing my skills and knowledge which I really miss that part of my job.

Anyway, on one of my posts about the things that John and I are doing, I received a comment from a mom about her child and her feeling of inadequacy in helping that child. Immediately, my heart went out to her and how she must feel at a loss of how to work with her child.

While I understand that not all of us have the same tools and skills of working with children in this fashion, I do not believe that this should be a deterrent from a parent working with their child. There are many things that a parent can provide their children without the formal training of physical therapy. In fact, I believe that the parent should play a vital role in a child's physical therapy for they are with them 24 hours a day/ 7 days a week whereas a Physical Therapist is only with them 2x's/week for 30-45 minutes per session at the most. Not only that, but a parent has a bond with the child that the Therapist will never have and I have worked with people long enough to realize that relationship determines to some extent how much a patient will work with you.

I am not advocating that you go it alone, or go off half cocked without some kind of knowledge as to what you are doing or the goal of treatment. But what I do encourage you as parents do is to take initiative and talk with your Therapist about what you can be doing at home, how to perform the treatment and what are the goals - short term and long term. If you have a Therapist who is not accepting of you getting involved, then maybe you need to find one who is.

As a Therapist, I enjoy educating people on how to rehab themselves when I am not there. Sure, my ego gets in my way at times and I don't educate because I want all the glory and want them to think that I am some kind of miracle worker. But I have learned that that is not in the interest of the patient. One of our jobs, especially with a child who is going to be receiving services long term, is to be a coach to that family or that particular patient. Well, if you think about what a coach does, you will understand that a coach is someone who teaches and supervises.

So I would like to encourage each parent that may feel that your child's physical therapy is better left to the "professionals", take the initiative with your Therapist about how you can get involved in the process. Ask him or her to show you what you can be working on during the days your child has no therapy. Tell them that you want to know what they are doing and why they are doing it and how can I help.

And then as a parent, as someone who loves that child, follow up and do your part. John and I do not have a formal time to do physical therapy. We are performing some kind of physical therapy in everything that we do during the day, whether it is when I am holding him, dancing with him, he is sitting on my lap and I am talking with him, sitting in his Bumbo chair or he is just laying down on his stomach (which we have gotten to the place where he is on his stomach much more than on his back).

Just don't think or let anyone else tell you that you don't have anything to contribute in this area because of your lack of skill or knowledge of the trade. It's not rocket science and it is something that anyone can learn.

And to those of you who are involved in this capacity, good job and keep going. Our children are counting on us as parents. As a parent, I am sure there is no other person who wants that child to excel more than you. Good luck to you.