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.

Down Syndrome In The Spotlight

Recently I have been thinking about the impact that Governor Sarah Palin had and continues to have on the thinking of society pertaining to individuals with special needs. Politics aside, she was a pioneer for many reasons. Unfortunately, she was ridiculed for many of those reasons. One reason in particular that encouraged me in my journey was her outward and very public love for her son Trig. I can remember that then-Vice Presidential candidate Palin had just been chosen to be on the ticket with John McCain about the time that John was born. Joy and I were still in a state of numbness when everyone kept telling us about Gov. Palin's son. It seemed that most of the time that we turned on the political pundants that consumed the airwaves at that time, there she was sporting her baby Trig for the world to see - almost like it was vogue to have a child with Down syndrome. This peaked our interest in this woman further. Not only the fact that their situation seemed to mirror ours in a lot of ways, we were also interested because of her public acceptance and affection for that child to a world that denies their right to life on a daily basis.

Surely she knew that the public that she would subject her Trig to was not accepting of him. But I like to think that she knew that that is what America needed to see which was that a child with special needs may or may not physically look just like you and me and that a child with special needs can and deserves to be loved and cuddled. Maybe this was part of the reason she was mocked or it could have even been part of the reason her ticket was rejected. But those 6 months that she had the spotlight, she communicated something deeply to some of us with children with Down syndrome and that is that they are people that are deserving of our love and affection. I might add that after having John in my life for 6 months, all of us in this house agree with her that it is vogue to have a baby with Down syndrome. We just call him our social baby because he loves life and loves people.

Maybe Gov. Palin will be back or maybe she won't. But she gave America a message that we all needed to hear during those months. And the message that I received was that children with Down syndrome should not be put on the shelf and forgotten. They are living, breathing individuals that are deserving of our time, love and affection. Some may criticize her for what she did with parading Trig in front of the masses, but I applaud her for her stand. And for that, she and Trig have encouraged me and my family.

Shoulders and Current Therapy

John continues to do well. He has had a slight bit of upset stomach this week for a couple of days which made him a little cranky but other than that he has been pretty healthy.

His therapies include laying on his back and working on reaching over his head to play with hanging toys. He tends to have a bit of trouble with this. It's not that he can't move his shoulders but the weakness of the muscle prohibits him from holding his hand up for prolonged periods of time. So I use hanging toys and my hands to work with him in this area. I have noticed him making progress in playing overhead but only for a brief 2 or 3 seconds. So we start there and we are building upon what we have.

We then flip over on his stomach. But we do it by rotating his hips which allows him to rotate his trunk so that he is on his stomach. When he gets on his stomach, I allow him to get his elbows under him and raise himself up. Over the past 2 weeks, he has started coming up on hands. This is pretty much what I have been focused on for the past month because his shoulder girdle was and still remains weaker than what it should be for crawling, for reaching out with one hand while on his stomach, for transitioning from side lying to sitting, and for good posture. So we will continue to work on his shoulders. My goal for him at this stage is to be able to reach out with one hand while putting his weight on one shoulder.

After we work with him on his stomach which he has grown to tolerate (the poor boy has had no choice with a Therapist as a Dad) this position for quite a while. We move to a sitting position where we are working on his sitting skills. I sit behind him and place my hands in his hands and let him feel what his body is doing. I can tell that he is working to keep his balance. He still wobbles quite a bit but I let him wobble as much as I can without letting him fall. I believe this will help those abdominals and back muscles to kick in and help him stay upright.

John loves to stand up so I give him a chance to stand. While it is not a short-term goal of mine for him to walk, I started standing him on his feet while on my lap just to give him some weight-bearing through his hips (I placed my hands around his chest while doing this). Well, now he wants to do this all the time so he is now to the point where he can stand on the floor with my hand placement at his hips. He loves this and would rather do this than to sit. But being the Therapist that I am, I do not like to nor do I recommend skipping steps with a child whose muscles do not respond normally (flaccid, spastic, muscle tone problems, etc.)

So as I speak of where John is in his therapy, there is a progression that we have followed and it started with the baby massage we did his first day of life (which we still do BTW).

This is where we are in life. It has been a blessing for me to have my other children in school because I spend all my day with John. It is difficult for me some days and I get to missing my old life of going to work, etc. But when I stop to think about what would happen to John if I went back to work, I wouldn't have it any other way. And when my wife comes home talking about all of the RSV and other illnesses she sees in clinic, she is very glad that we have this opportunity to keep him home.

Calories, Baby Food and John

John is now five months and 1 week and weighs 13.5 lbs. We started him on jar baby food #2. Fist starting out, John had trouble knowing what to do with his tongue as do all babies in making this transition. He would thrust his tongue out, therefore getting most of the food on us and himself. After working with him on a daily basis, he seems to be getting it. Now when we feed him, the tongue thrusts are fewer and he opens wide when the food nears his mouth. John sits in his bumbo chair at the table with us for meal times so he has noticed food for the past 3-4 weeks.

Normally, children with Down syndrome I think have more of an issue with transitioning from bottle to spoon because of the weak muscles in the tongue. This is one reason that we have chosen to keep John on the "slow flow" nipple for bottle feeds. The "slow flow" nipple makes him work harder in order to suck, therefore strengthening the tongue and jaw muscles. At this point in time, we are feeding John baby food 2x daily and he is guzzling anywhere from 26-30 oz./day. That sounds like a lot but when you calculate the caloric intake needed for good growth, it is probably minimal. Which leads me to my next topic - how many calories should my baby be getting.

Usually for proper growth a baby requires 100 - 120 calories/kg. To calculate your babies weight in kg., you need to divide your babies weight in lbs. by 2.2 since there are 2.2 lbs to 1 kg. On average, there is about 20 calories per ounce of formula with there being more in breast milk depending on the fattiness.

Working to meet benchmarks are usually not very important to us as each child is different and develops differently. But good caloric intake does matter to us as we feel that John needs all the bodily growth that we can give him.

Love and Acceptance

As a parent of five children, I have learned that one of the best things that a parent can give their child is love and affection. Love and affection is a human need for which we all strive. Children look for it from their parents and when it is not found at home, they search for it outside the home. If a child is given love and affection, they learn confidence in who they are and their abilities.

We have watched our 4 "typical" children be accepted wherever they go without question because of the similarity to others. Children with Down syndrome or other handicap are not as readily accepted for various reasons of which are ignorance and differences in appearance to name a few.

One of the goals that we as parents have is to raise our children in an environment that is loving, nurturing and accepting. Our immediate and extended family provides that to John but it is difficult to find that type of environment outside the family except through a church body.

Our local church body has wrapped John with the same love and acceptance that my other children enjoy. It is rare that we go to church and someone doesn't either take him and he gets passed from Mom to Mom or they ask about him. As said earlier, this environment allows John to enjoy and trust because he is learning that they love him and will treat him right. Some may wonder why this is.

I believe it is because that most people of faith look at people with a depth that penetrates the surface. They believe that the actual person is inside the fleshy shell that we all use to get around and communicate. So as John grows up in this type of environment, he will be free to be himself and not be ashamed of who he is.

I am reminded of the statement that was made by Coach Stallings from Alabama who had a child with Down syndrome. He said that the church was the best place for his child was church because of the love and acceptance of the people there. In the 5 months that we have had John and in the 9 months leading up to his delivery, we have experienced an outpouring of love and seen an unconditional love for John that is crucial to a child's life for them to thrive physically and emotionally.

Thanks to our church body for what you are giving to John. We enjoy sharing him with you because we know that you love him too.