A Matter of Perspective

I have been thinking a lot lately about the issue of Down syndrome children being mentally delayed and I have accepted the fact that my son may be mentally delayed. The degree of delay, if any, remains to be seen and we will cross that bridge when we get there. For right now, that doesn't factor into how he is treated by the ones who love him and I would hope that it would not be a factor in how people treat him in the future; however, I realize that may not be the case.

But there is one question that keeps coming to mind which is what is so wrong with being mentally delayed? We often times act like it is unacceptable to be mentally slower than the majority. On the other hand, we sometimes act like it is unacceptable to be mentally faster than the majority. Do these people not enjoy life as we do? Yes, they may have to settle for more service oriented jobs with less pay and are often limited in career achievements, but is that so bad? Does being smart equal being happy in life or does being mentally slow mean a life of unhappiness?

I suggest that the answer to both questions is no. We are too often led to believe that in order for a person to be happy in life, the person needs to have x amount of education and make x amount of money, live in a nice house in an upscale neighborhood and this and that. After a while, it becomes a rat race just trying to accomplish all that we are to accomplish to be happy only to find dissatisfaction once we have "arrived".

When Joy and I first became aware that John would be born with Down syndrome, (in the first trimester of pregnancy), we both prayed that the Lord would bless us with a child able to relate with God and people. At this point in John's young life, he is very able and desiring to relate to those around him. As a matter of fact, it sometimes seems that he would rather relate than to do anything else. John draws people to him with his smiles and bright blue eyes. He has the ability to make a person smile and forget about the stresses if only for a minute.

This ability is what changes lives for the better, not the intellectual ability. Our lives have been changed forever by his ability to give love and we look forward to many years of the same. He may not graduate with honors or go to college or even learn to drive but I don't think that will stop him from showing love to those he meets.



...sometimes it seems that he has a better understanding of the priorities of life than I do.

I Guess I Just Don't Get It

Lately, there has been a lot of hype over the use of the word 'retard', and I guess either I just don't get what all the fuss is over or my child is not old enough yet for it to affect me. Either way, it seems to me that we sometimes create issues for ourselves that doesn't need to be which I have been guilty many times. It does seem that the stronger we feel about a certain issue, the more we are easily offended by people who abuse the subject whether it be mental or physical retardation, social issues, or politics.

People have been misusing words for years now. This is partly because of ignorance and partly to aggravate and get a rise out of people. I have been a party to this in my past as I am sure most people have at one point in life. And to be honest, my motive was to get a rise out of people, for shock value, to get attention which is what I usually got.

I realize that this word is highly offensive to parents with children who are indeed delayed (which is what the word really means anyway), but there are also many other words that are just as offensive to other groups of people.

I guess it just depends upon what 'group' you are in that determines which words offend you. Yes, the word 'retard' offends me, just like the word 'goddamn', calling people 'assholes', and using the 'F' word offend me. But the way that I have learned to deal with offensive words over the years is the way that I have dealt with offensive people over the years - 1)politely let them know how their choice of words offends me and to ask them to refrain from use of those words while around me, 2)if the use of words does not stop, then I will usually stop my association with that person. This is the way that I have taught my kids to respond to people who use words in an offensive way and this is how I will teach John to respond.

I have found that the people who really want to be my friend will respond positively to my pointing it out to them while others just couldn't care less. And it is the people who couldn't care less that are in it merely for the shock value so why should I continue to give them ammunition by letting them get to me.

Sure, I would like to live in a world where there is no offensive language used but honestly, there are just some people in this world, and I admit that I am one of them sometimes who do not care or think if we offend people or not with our speech.

Ignorance and insensitivity of people is not worth making me unhappy - there is too much of both in the world for that.

Motivated By The Relationship

During this past 6 months, I have noticed many differences between John and our other children. But the one that has caught my attention the most is what motivates them to learn new things like talk, eat, smile, laugh, etc. I realize that all children are different and is naturally motivated differently, but what I am talking about is while they are babies.

Looking back on the first years of my other children, it seemed as if they were on auto-pilot. Milestones came and went with no intervention needed - just the opportunity. They even seemed to make sure they had opportunity with wanting to be put down on the floor or crying (loudly I might add) when they needed a new diaper or wanted to be fed.

John seems to learn just as much as my others did, just at a different pace and also with more encouragement. Whether we are at church, school or at home with his siblings, he definitely comes to life when others interact with him. This type of interaction seems to energize him to press on and keep going. Whereas if I lay him down and go off to do my other work, he often times goes on to sleep and will sleep half the day. I know that this is ok periodically, but it makes me think that I couldn't afford to do that to him on a daily basis.

I have also noticed that John would rather relate to people than to sleep or eat; I guess he is too afraid that he will miss out on something. For example, if we are feeding him and someone walks into the room or if he catches a glimpse of someone behind him, he will stop eating and turn in his Bumbo Chair to see who it is and stare at them until they talk with him. We started out feeding him in an empty room so he would have no distractions, but now we are purposely feeding him with the whole family present so he will learn to focus while other things are going on.

He is truly a very relational baby and we love him that way. He is so full of love and smiles that people can't help but speak to him or hold him when they are near him. This will be the character trait that sets John apart from others - his ability to speak to the heart without really saying a word.

Relationships - they are wonderful gifts that changes lives forever.

Testing and Other Opportunities

John at times goes to meetings at the hospital with my wife since she sits on a Women's and Children's committee at our local hospital. Other Pediatricians as well as OB/GYNs also attend. When we had John, a lot of the Drs at the hospital knew of our newest addition as well as the fact that he was born with Ds. It is interesting to see their reaction

So when my wife takes him to these meetings with her, there is the opportunity for his delivering Dr. to see him. I get real excited about this because it gives us a chance to show him John's progress without us saying a word. Well, at one of the recent meetings, his delivering OB asked to hold him which he did and played with him for a little bit.

We have never talked with him about John's progress but we hope that his interaction with John will lead to more positive outlook from OBs toward children with this syndrome. We know that the wheels of change turn slowly but this may be the start of turning that wheel.

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Also, it has been suggested to us that we might consider taking a sample of John's cells and getting a biopsy done. This would tell us whether or not all of John's cells have the 3rd chromosome at 21. This has come up more than once with us and other Dr friends because of the fact that John is so alert, moves so well and that he didn't have any internal issues at birth.

While we are thankful for John's progress and do feel that the Lord has blessed him with good health and it is very exciting for us to think that our son may not be affected in 100% of his cells, reality tells us that having him tested would not change a thing. John is who is and he will become the person he is to become.

Sure, we have many questions as to who John will become and what he will be able to do. But I don't think any test can give you that information. For us, we have found that the nearest answer to that question is to provide him with opportunities to learn and grow.

As his parents, we had always thought that John was progressing well and was born with abnormally good health for a child with Ds, for which we give God the credit and glory, but then again we are biased. So it was good to hear another Dr make such a remark about him.

So for now, we are content with not knowing the outcome of testing. I would like to hear from those of you that have experienced testing. Have any of you encountered this? If so, did you test and did it change anything for you?

Baby Tarp

As you know, feeding a baby can be pretty messy. That can sometimes delay parents from starting solids. It seems that food gets everywhere except where it is intended which is in the mouth.

I know that when we first introduced John to solids, he didn't have any idea of what to do with it even though he had shown interest by paying attention to our food. I always dreaded feeding him because I knew that it would end up being more work for me in the end.

Well, after 1 1/2 months of him using the spoon, he has gotten somewhat better at it. He now manages to get more in his mouth (and keep it in) than not. Don't get me wrong, I still have a mess to clean up afterwards, but now the mess in confined to his face. And now thanks to a friend of our loaned us some baby bibs to use. Yes, we use bibs but these bibs are the extra large variety. My kids call them baby tarps.




Now when he gets fed, we don't afterwards have a lot of food stains on his clothes. Thanks Julie.
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Now an update on John's fight with sickness. I think I can safely say that his sickness has left him. He has fully regained his appetite for solids which he had lost during his illness. He now would like his solids 3x/day along with his nursing/bottle.

So since he has wanted to increase his eating, we have started working with him on finger foods (cheerios, crackers, biter biscuits, etc.) just so we have more of an option and he has done well with them. At first (about 2 weeks ago), he would just gnaw on them and not really bite them; and now he is able to bite them in two.

So he is making up for lost time and we couldn't be more thankful with the way he is progressing. It has taken a lot of work and commitment from us (sometimes I feel that he is taking all of our energy right now) but I can see that it is paying off.

Patience Please

First, I would like to thank the readers who have prayed and have spoken words of encouragement while John has gone through his first illness. It has meant a lot to me to hear such encouraging words from others who have been through the same. John is feeling much better today. He is definitely making up for lost time as he just can't seem to eat enough. The positive side is that he is gaining his weight back; the negative side is that he is going through diapers at an alarming rate. Oh well, I would rather have the weight gain.



Now on to my thoughts for the day....

The phrase patience is a virtue has always been a phrase I've heard almost all my life. My parents tried to instill patience into their children and I have always admired people with patience. Working as a Physical Therapist Asst. with people have tested my level of patience such as raising children or being married have. My world has been surrounded by reminders of the need for more patience. So before John, I considered myself to have patience...but John taught me that I needed more as it has required me to learn to have more patience in dealing with a child with a special need.

For example, we have now been feeding John solid food for about a month. It is naturally difficult transitioning an infant from bottle/nipple to spoon anyway, but the transition is made more difficult when your baby continuously thrusts their tongue out as is the case the children with Down syndrome. This doesn't mean that the child cannot learn this new skill; it just means that it will require more patience than was needed with children without Ds. This is something that we have come to understand about teaching John whether it is feeding him solid food or other things.

When we first introduced the spoon to John a month ago, he was interested yet unable to get very much intake. But the sessions persisted as long as he kept showing interest. During that time, it was very discouraging as their seemed to be more disadvantages to feeding him solids than advantages, but we were on a mission and that mission was to teach this little boy how to eat from a spoon. By the time we finished, he and everything he was wearing was a mess.

For me, the time it took to feed him was a little discouraging but I will say that after a month of 2 a day practices with the spoon, things are going much better for him. He loves and has come to expect his solid food 2-3 x/day. He still is not as efficient at it than my other kids were but he is getting it. His appetite has increased so much for solid food that he eats 3/4 jar at one sitting. His favorites are carrots, table applesauce, smashed bananas, and sweet potatoes.

It still takes me more time to feed him than it did my other kids and it is messier but I am learning that if we are going to teach this little boy, we are going to have to slow down and work with him at his pace instead of pushing him to meet our demands.





So for a guy who thought I had a lot of patience, I am learning that I need to have more if I am to be a teacher to this little guy.

The Road to Recovery Gets Bumpy

John had been doing well earlier this week with just a touch of cough yet having a good appetite. In fact, his appetite for solids have increased greatly over the past 2 weeks while we have seen his desire for breast milk decrease. This is what we expected from our other children at this age but we weren't sure if it would go the same way for John. We are pleased to say that it has...up until a couple of days ago when he refused to drink or eat anything.

He then started coughing a little bit more for which we are still using the inhaler and he became very cranky and discontent. I knew he was hungry by the way he sucked on his hands and my finger but he still refused to swallow any milk and would spit out any solid food that we put in his mouth.

So this afternoon, I took him to check in his ears and sure enough, one of them was infected....and thankfully only one. So for the first time in his young life, at the age of 6 1/2 months, he is taking his first antibiotic. Maybe by the end of the weekend, he will feel like eating again which he really needs and I'm sure wants to catch up as he has lost just shy of 1 pound since this all started a couple of weeks ago.

But I feel that we are out of the woods with his cough. Speaking of cough, even though he had all the symptoms of RSV, he tested negative for the virus which is not totally accurate. It is an antigen test and dependant upon whether or not they get antigen in the vial to test. Anyway, we are glad the worst is behind us. Only one of our others had RSV as a baby and I had forgotten how rough it can be.

The Strains of Raising a Child With Special Needs

Since having John, our world has turned upside down. It has been quite an adjustment, of which we have not completed, on all of us to care for this little boy whom we have all come to love. But just because we have chosen to accept this little guy into our family and have committed to providing love and care for him doesn't take away the fact that it has been a strain on everyone.

Being new parents to a special needs child means that we are still in the adjustment period. After thinking about this, I'm not sure that there is a time when we will be able to say that we have adjusted to this life. I think that with each new circumstance comes a new adjustment. This past week when John was so sick, we got a taste of the medical fragility of John as opposed to our other children.

Our other 4 children have had to adjust to the fact that Dad and Mom aren't as readily available to them now as we were before John arrived. Sure, they knew that John was going to have Down syndrome and that he would be different and require extra help. But the reality of those words are difficult to see when you are a child.

I have found myself becoming more impatient with them since John. I realize that part of that is that I am stressed and have not fully accepted my new life. But with each new day, I am learning to let go a little bit more and accept that this is my life but I also have to keep going with my other children because they need me just as much as John.

Another stress that child, let alone a child with special needs can bring into the home and has brought into our home is the stress on a marriage. Joy and I have a fairly good marriage with all of the added stresses of our professions and of having 4 children which we had felt like we had overcome a lot of those challenges and had a plan in place to raise our children and still be able to manage our individual careers. And then came John.

John changed all the rules when he came. Joy and I would tackle this head on just like we have done most things in our life. Our plan of attack was for me to stay at home and provide his therapy while she worked as a Pediatrician. Even though we still feel like this is the best option for us and for John, it has come with a price. And usually, the price is relational. I tend to be a real intense person and have built a career on striving to provide better, faster results with my patients than the other therapists I work with. When working with one of my patients, I become so overly focused on my goals, that sometimes I tend to tune out other relevant things. And that is what I have caught myself doing at home.

Since I am home with John 24/7, I have sometimes noticed myself tuning out the other relationships in my life for the sake of making John better as it has always been one of my goals to have the best, most progressive Down syndrome child around. I would often catch myself, and still do at times, doubting Joy's care for him, afraid that she wouldn't work with him on the things that I would or wouldn't push him as I would. So I find myself today, sitting in this house with John just as I have done for the past 6 months devoted to him which there is nothing wrong but I have done so at the expense of ignoring others in my life.

After 6 months, and having a wife who loves me enough to be honest with me, I am beginning to see that some of the sacrifices made for John have not been healthy. I am learning to let go a little and relax. I am learning that to not only keep working with John, but to trust God for his development. Since I believe that He is the One who gave John to me, shouldn't He be trusted to develop him? This perspective may not give me more time with my wife and other children, but it will change my attitude toward them and hopefully make me more pleasant to them.

Children with special needs can take up a lot of time and energy. Let me encourage you not to forget the other relationships in your life. They need your time as well. I am learning that John will be just fine if he doesn't have my undivided attention 8 hours a day. In fact, he will probably become a much more independent child if I didn't provide that for him.

Breathing A Little Easier

We all are actually. This morning John is still a little congested but alert, smiley and active. Yesterday however wasn't the case for us and scared both Joy and myself.

We had been giving John his breathing treatments every 3-4 hours. Yesterday morning we woke up to an inactive, quiet little boy whose color wasn't good and was obviously working to breathe. By working to breathe, I am talking about being able to see his ribs move in and out and his shoulders rise and fall with every breath. We then gave him another breathing treatment which he didn't respond to very much. We then felt like we had to get him to either the clinic or the ER. The ER wasn't a very appealing choice for us (yes, even Dr's make the ER a last resort) and the clinic was to open in about an hour so we opted to continue nasal suction, breathing treatment and steam until clinic opened. (I might add here that if we had been looking at a couple of hours or more wait time for the clinic to open, we would have gone to the ER - so I am not anti-ER; you just have to weigh your options).

Joy took John to the clinic to meet one of her partners (Joy doesn't see her own kids for medical care unless it is simple). To our surprise, his oxygen level was 97-98% and his ears were clear. So that gave us hope that he was responding more than we thought and renewed our confidence to take him back home and keep doing what we were doing with the added help of an aerosol chamber and an inhaler for us to use when we are out in the car and don't have access to the breathing machine.

I also wanted to say a word about the bulb syringe. I realize the ones you buy in the store are wimpy and aren't efficient at doing the job. The one we use is the same bulb syringe that is used at deliveries at the hospital which are not found on the market. But can usually be purchased through your pediatrician or hospital. This syringe still isn't able to get the deepest phlegm but it gets most of it. We use ours pretty regular during these times, especially before he takes a bottle or nurses.



Also, I wanted to thank each one of you for stopping by to check on John. The blogging community has become such a part of our life and it is good to have communication with people who are or have walked in your shoes. Our little situation may seem trivial to a lot of you but I this situation opened our eyes a little bit more as to what others face on a regular basis and made us a little more empathetic. We feel fortunate and blessed that we have not had the serious issues that I read about on here which makes us hard to relate at times but know that our thoughts and prayers are with you in your endeavor to provide for your little ones.

An Unwelcomed Visitor

Yes, I am talking about Mr. RSV. It started out as croup last week after colds went through the house. John seemed to be unaffected by all the hacking nose-blowing going on around him and we were taking precaution to keep him away. But that is difficult to do when everyone in the house is blowing virus all over the house. So it finally caught him.

It has affected his sleep a little bit but not drastically. So the rehab side of me and the medical side of mom brought the big guns out and started him on a regiment of steam showers initially but then we finally had to concede that we needed to move to the albuterol which we did. We began those last evening about every 3-4 hours. This has seemed to bring back the smiles and remove the droopiness of the eyes.

The rehab side of dad has been seeing that he gets enough rest along with warm liquids and solids. Don't get me wrong, his appetite is not the same but I felt it important to get something down him even if it was an 1-2 ounces every hour. I have also made sure that he gets a little active time in there or at least sit him up instead of laying him down. Being upright will help prevent the drainage from settling in his little lungs. And light activity helps him to cough which is good although we still have to use the bulb syringe to clear his nose because the poor little guys can't cough strong enough to clear it himself.

He seems a little more perky this morning but definitely not out of the woods. But maybe with this combination of remedies, he will be back to himself soon.