Is intellect a barrier to relationships?

To a lot of people and maybe to me in some degree me before John came into our lives, John and people like him were viewed as a burden, someone who could not contribute to society. John will probably never be known for his intellect or will probably never be a profound speaker. 

But when I observe John and how he interacts with people and them with him, I am humbled at his gift of relationship. A few things I observe with John is that he doesn't compete with his words or experiences when talking with people, because there is nothing he is trying to prove to people except maybe the fact that he loves to play cars and that he wants to be friends. It really doesn't concern him that the person is smarter than he is or that your vocabulary is larger than his. The color of a person’s skin, length of hair, whether or not they have tattoos or piercing or the clothes they wear does not change how he interacts with people. He sees everyone through the same lens and everyone as having the same potential for friendship and a playmate.

So it saddens me when I see people brush him aside when he attempts to make someone his friend. It makes me sad for John, but even sadder for the other person. For getting to know John comes with more blessings than anticipated. And it is this unconditional love for people that John and others like him have that can teach all of us "normal people" who have the ability to think deeply about things a thing or two about relating to others. I often think that one of the reasons for John being a part of our family is to show us what LOVE and ACCEPTANCE look like.

Share the Love

Before we had John, we were not really aware of people with Down syndrome. Of course we would see them out and about in the community with their parents or see them as patients, but there was no reason for us to get to know them on a personal level. At that time in our lives, they were just kids who were to be kept at arms length mostly because of fear of people who didn't look the same as us and some out of misunderstanding of Down syndrome and some out of just plain ole arrogance.

But then...we had John and we were forced to change our attitudes and our hearts.Thank the Lord that we had 8 months to prepare for him. The change didn't come instantly and is still ongoing today. But I can say that our hearts and priorities have changed. And I can see where John has been used in the lives of others in the 8 years that he has been with us. John and I'm sure other children with Down syndrome are the most loving and forgiving individuals that I have ever met. He loves me unconditionally and his memory is short even when I mistreat him. And that is the kind of love that we all long for and need in our lives. So I share him with others as much as I can by exposing him to others just like I did with my others. There have been many people come through the doors of my home (mostly teenagers with my other children) and all have gotten to know John whether they wanted to or not.

These same people have returned time and time again over the years and we have seen them include John in their outings and play with John and hug on him. The more I see this, the more I realize that one of the best things that I can do as John's Dad is to share him. Share him with others because we all need the type of  love that John so freely gives.

So rather then be embarrassed or ashamed of your son or daughter with special needs, be proud of them and share their ability that God has given them - the ability to LOVE UNCONDITIONALLY.

Teaching John

It has been a while since my last blog entry and we have entered into a new phase of life with Down syndrome since then. Life seems to be a continuous period of adapting to life with Down syndrome as each day brings a different set of challenges. Each parent of a special needs child has to navigate the waters of raising a child with special needs the way they see fit, and each set of parents chooses to do it differently. Being both medical people who are familiar with Down syndrome, my wife and I chose from the beginning to fore go the states admonition of how to help and teach our son, and to personalize our help to John's needs.

John is now 8 years old and is in 1st grade which has brought many challenges. But we are facing them head on and with determination of giving John all the tools he needs in order to learn as much as he can. We know that there are limits to what he will be able to learn, but neither we or anyone else can tell us where those limits are...so we push, prod, tutor, read, play with marbles, raisins, count our peas, chicken nuggets, etc until we find the ceiling to his abilities.

Thus far, John has surprised us as to his abilities. Just as I have stated before on this blog - people usually rise to the challenge they are given. If people aren't challenged to move toward a goal, then they won't reach the goal, but if we set goals and challenge them to reach those goals, we are surprised at their achievements.

So we keep on challenging and loving him for who he is and we pray for him that the Lord would strengthen him and guide John. Because we know that God has a plan for John's life. 

Closing In On 6 Years Old

Life has gotten busy around here with jobs and teenage children and getting ready for college that blogging has been shifted to the bottom of the list. But to give an update to all who still look at this blog - John is doing well and continues to progress in his abilities.

He will be 6 years old at the end of July and as with any child, each stage of his life presents with a different challenge...just in different ways and not always age appropriate. Although, he is 6 years old, he is more on a 3 or 4 year old level for learning, communicating and ADL's (activities of daily living). 

He is going to preschool (non-special needs) and has been going to the same one for about 2 years now. He has made many friends there and he names them by name and gives them hugs and they give him hugs. They miss him when he is gone and really treat him like any other child there.He is expected to act and obey just as the others or else he gets put in time-out just like the others. And John has risen to the challenge and has learned that he doesn't like time-out and he knows that he needs to obey to avoid time-out. He can count to 5 and can recognize most of the ABC's, although you have to get his attention for this to happen...and this is a lot of the challenge. His attention span isn't very long, but it is getting better as we are working with him on staying on task.

His recent achievement is keeping his underwear dry all night. He has been wearing underwear during the day for about 9 months now but just recently asked to wear underwear at night, so we were willing to let him try it but told him he had to keep them dry. It has been about 2 weeks now without any accidents. And when he needs to go in the night, he will wake up and come tell us he needs to go potty. He won't go to sit on the toilet without asking us to help him, but that will come. I'm just glad and thankful that he is potty trained. 

Since he has not learned all of the ABC's or numbers, we have decided to hold him out of kindergarten and they will allow him to stay in preschool another year. We will be praying that he will be ready when he is 7, but if he's not, then we are not going to worry about it and do what is best for John. In the past 6 years, we have learned that John is on his own time schedule and his schedule or abilities cannot be sped up. This does not mean that we don't try and teach new things, but it does save us a lot of heartache from him not reaching the milestones at the age other children learn them. We have learned that he will reach that milestone eventually...and he has met every milestone thus far, just at a different speed. 

Thanks for reading this blog and John's story. We love to share his story and how the Lord has protected him and blessed this family by giving us John. It hasn't been easy and I don't think anyone with a special needs child will tell you that, but if you hang in there with them you will find that they are part of the blessing that our Heavenly Father wishes to bestow upon those of us that allow them to come into our lives. 

Pictures of John

John is now 5 and is a very active little boy who is acting more like my other children every day. He is now 90% potty trained and loves playing with his friends at preschool and his brothers and sisters.

He loves playing in the dirt and mud and also loves working puzzles and reading books. I am amazed more everyday at how he is more like my other children than he is different. 

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.

A Boy and His Dog

We don't have a dog of our own. But the dog belonging to the family who keeps John loves John and John is crazy about him. Here is a pic that Joy took yesterday of the two of them hanging out together.

John Turns 3

How time flies. We as a family look back over the 3 years of caring for John and see how the Lord has used this little boy to mature us and to cause us to rethink the priorities of life, just as our other children have also come with lessons for Dad and Mom. But a child with special needs really throws everything off balance from the way the we think life should be.

These past 3 years has caused us to work a little harder and dig a little deeper. It has taught us that we sometimes grow very comfortable with life and relating to people "just like us", that it is difficult to see how the Lord wants to draw us out of our comfort zone to teach us more.

I am happy to report that John is doing above and beyond what we ever expected. Don't get me wrong, Joy and I have always expected a lot from our children and are proud of how each child has met those challenges. But given the professions that Joy and I have, we don't see the healthy Down syndrome children and when we found out that John would be born with Ds, our picture was skewed. This alone has taught us reliance upon God the Father who loves His children very much doesn't follow a script of how life should be and gives us strength and guidance to live the life He has chosen for us to live.

With that being said, John's accomplishments have overwhelmed us with the latest being his 3 year check-up visit last week. Despite not gaining weight much since his last visit 6 months ago, John received a clean bill of health. His head size, height is all on track. Joy and I had his neck x-rayed for atlantoaxial instability which is common in Ds children with the results being negative for any instability. It was determined that he is functioning at about 6 months delayed. His vocabulary grows weekly and is now putting about 4 words together.

As parents of a Ds child, we have learned to celebrate each and every accomplishment no matter how small. That each accomplishment, each day of life for us and for John is a gift from the One who loves us very much. I don't have an explanation for why God chose me to take care of John just like I can't explain why he chose me to be born in this country or allow me to be born to the parents I have. But I know that He loves us and gives us all what we need in order to grow closer to Him for that is His desire for each one of us.

John: Learning and Growing

It has been a while since my last visit to the blogworld and much has happened. We continue to be blessed with a little Down syndrome boy who never got the memo that he was supposed to be delayed. We have also been blessed by hearing and reading about others with children with Down syndrome. There are a lot of people out there that really love their children and work to do what is best for them even though the best way isn't always clear.

John continues to grow and to learn new things. Besides being the youngest of 5 children, he attends daycare 2 to 3 days a week. He is the only child there with Down syndrome but that doesn't stop him from doing what the others are doing or having friends. The other children motivate him to do things that we hadn't tried at home. For example, we hadn't allowed him to fall asleep in his own bed but at daycare, he lays down with the others for nap and goes to sleep with them. Since going to daycare, he has gone to potty in the potty sporadically but with success. He loves to finger paint with his friends and to sit at the lunch table with the others and eat his packed lunch. John enjoys reading books and running. He has learned to run and is now running everywhere. He has been slow to learn to run with his head up but after a few run-ins with the cabinets, he is remembering to hold his head up. John feeds himself now and loves to feed Dad. There is nothing he doesn't eat. He has eaten boneless ribs, potato chips, pizza, BBQ pulled pork among other things that I wasn't sure he could chew.

As much as he eats, one would think that he would gain weight, but weight seems to go on slowly. His weight as of a week ago is 24 lbs. (he will be 3 in July). He is growing taller but hasn't changed much around the middle. He is still wearing clothes that he wore 6 months ago.

He now has a mouth full of teeth which have all come through. His last teeth came just about a month to two months ago and they didn't come through in the order or the shape they were expected. But we are encouraged that they all broke through in the correct place. Our dentist told us that if there is a baby tooth in that spot, there is usually a permanent tooth behind it. We will see what happens. With those new teeth in place, we are training him to keep them clean and for the most part, he does well with this task.

His vocabulary is increasing as he can now say "mom" to which my wife thought he would never say. So now he says it all the time. He goes to speech therapy 2 times a week for an hour. He was slow to warm up to the Therapist and work with her, but is now learning a lot of different sounds and words. He is even putting some words together. His vocabulary is probably around 40 to 50 words.

I write this not to brag on my son, however I am proud of his accomplishment, but to encourage new parents that these children have much more ability and potential than what your circumstances may appear. Don't give up, keep loving them for who they are and they will surprise you with how much in return they give to you. These children are an immeasurable blessing to all who take the time to get to know them.

A Bad Combination

Children with Down syndrome have many similarities to children without Down syndrome. But as we all know, there are many differences. A lot of the differences are not critical and do not pose a problem, while there are some differences that become very problematic for our kids trying to fight off illnesses.

Earlier this week, we were reminded of the differences that work against fighting sicknesses when it was found that John had developed pneumonia. The differences that I am referring to are 1) low tone, 2) shallow breathing and 3) weak cough. These three worked against John this week as he was getting sick. He began with just a temperature but no real congested cough or snotty nose so we weren't they alarmed since we routinely give him breathing treatments anyway as a preventative. But with an elevated temperature, he wasn't drinking enough liquids and became a little dehydrated. The shallow breathing and decreased activity from being sick doesn't keep the lungs expanded as well as usual. The dehydration pushed him to where the mucus in his throat and lungs that usually get coughed up by you and I just settled in the lungs of a sick little boy with a weak cough. As a result, John was becoming infected by the secretions that he could not expel out of his lungs. By the time, we got him to the Dr's office, he was infected and has spread to his bloodstream.

John is now on the road to recovery without having to spend any time in the hospital but we are going to the ER everyday for a shot of antibiotic in addition to the antibiotic given orally here at home. The reason for both antibiotics is in part because of John's immune system is too weak to fight the strength of the infection and that the infection was in his bloodstream.

We have been reminded again this week of how quickly kids with Down syndrome can get really sick. Although, John is recovering now and has been eating and drinking well today, we are still keeping a close eye on him as well as giving him regular breathing treatments. This leads me to another thought - we are giving him breathing treatments because as we rehydrate him, the mucus in him lungs become loosened and need to be expelled. Since John has a weak cough, the breathing treatments help him to cough and bring up the mucus.

But most of all, we are thankful to the Lord for giving discernment in knowing when to take him to the clinic and to the Drs and nurses at Mercy Pediatric Clinic for giving him the care and attention needed. It really helps having a Physician that knows your child and is familiar with Down syndrome.

A New Chapter - Daycare

Since both Joy and I work, John has always been babysat by a friend in her home. Recently though, our babysitter has started taking her son a couple of days a week to a church sponsored daycare here in town. Joy and I had expressed some interest in startin John in a daycare program but wasn't really sure if we wanted to send him to a special needs program or not.

We agreed to send him to the daycare where our babysitters' little boy goes, not really knowing how John would respond but with hopes that John would adjust well. And the adjustment has gone very well. The other children in the daycare have responded well to John and he has learned so much from them.

He lines up with the others and has learned to wash his hands under the sink and sits in his little chair at the lunch table very calmly and eats his packed lunch. To our surprise, he has even learned to go and get his pillow from the closet and take a nap with the others after lunch without being coaxed.

We are thankful that John has adjusted so well to his new surroundings, to the other children and they to him. I realize that each Ds child is different and face different needs but integrating our children with society often times challenges them to learn new skills.

Taking a step like this may be scary for parents of children with Ds as we weigh all of the pros and cons of whether or not to keep them with their counterparts. But we have had a great experience with this step. My advice is to know your daycare and staff. Know your childs schedule at the daycare and try to work with your child on the same skills as the daycare is asking of them.

John's Encouraging Progress

John is now unstoppable. He has found his legs and is constantly on the move. Just as with any 2 year old, he is into everything and thinks that he can and should be able to do everything his siblings do.

His newest skill is running. He loves to run, especially when he has something that he knows he shouldn't. He has great hip rotation which is a problem with children with Down syndrome. If you remember, the way that we confronted this issue is stair climbiing (let me know if you would like to know more about that part of therapy).

We are working on mouth and tongue movements, especially sucking through a straw. A couple of the ways we are approaching this is to use a sippie cup with a valve, and to use a short straw. He seems to do better with a short straw as he doesn't have to suck as powerfully. And as he improves, the length of the straw gets longer, therefore and hopefully increasing his suction power.

His eating has greatly improved. However, he doesn't like anything chocolate which is strange for a little boy but then again, we are all different. Among his favorite foods are vanilla ice creem, french fries, yogurt (I still feed him Brown Cow which is high in fat), chicken, green beans, and green peas.

He still drinks from a bottle when he is tired, otherwise he used a sippie cup with a valve. The valve encourages him to suck and it also prevents messes. He is drinking whole milk instead of formula consistently now and has been for the last 4 -5 months.

I don't get on hear as often as I would like but still like to update you all with what is going on with John and how we are dealing with his syndrome. May this be an encouragement to all new parents of children with Ds that these children are wonderfully gifted children and can learn to function in the world. My family would be lost without John as he has been a blessing and complete joy to have.

Often times the medical community paints a dismal picture of children with Ds which cannot be taken generally as each child is different. As a Christian and a believer that we are all fearfully and wonderfully made with a purpose, we believe that each child should be given a chance to thrive and succeed in life. And that is what we are doing here - giving John the best opportunity to thrive that we can give, most of which is our TIME. May God be with each of you as you raise and make decisions on how to best interact with your child.

An Update on Speech Therapy

As a parent, do you ever feel as though other people do not see your child as you do? That they just don't see the same potential, deficits as you. Well, that is where we are with going down this new path with Speech Therapy. Granted, we (the Therapist and wife and I) are beginning to be on the same page in our assessment of John and the direction we think we should be going.

My wife and I began by getting an initial evaluation done by a Speech Therapist here in town. The evaluation didn't go well as John was cranky and did not perform for her the way he performs for us all here at home. This is understandable and is expected at any evaluation of a child. But unfortunately, the Therapist has only the documented evaluation to go by as a place to begin treatment. This means that the Therapists' first impression of John, whether accurate or not, is where his deficits were defined, not to mention that having the diagnosis of Down syndrome brings with it a host of pre-conceived ideas from people.

Needless to say, both Joy and I were not impressed with the evaluation or the Therapists abilities to draw John out and motivate him to perform which I think is the hallmark characteristic of a good Therapist. So, we immediately moved him to a Therapist with Pediatric experience and we are now in our 3rd week of 2 days/ week outpatient sessions.

So far, it has been a break-in period for both John and Therapist as they work together to learn each other and the Therapist sees John for the child that he is and not just another Down syndrome child. As John gets more comfortable with her, he opens up more and shows more of himself. As for the Therapist, she is a talented Therapist who seems to connect with John and make him open up for her. What remains to be seen is her willingness and ability to listen to John and his parents and adjust her therapy to meet the needs of John. I think it is a downfall of we Therapists not to listen as much as we should and to begin our therapies at the place that we think they should begin which is usually someplace behind the clients' true abilities.

With a non-verbal child such as John, I know that it is difficult to establish what he knows and what he doesn't, whether the problem is cognitive vs. oral-motor. So in this initial phase of getting to know one another, we (wife and I) are waiting and watching to see what happens with an occasional comment here and there to our Therapist.

At this point, the Therapist doesn't see John the way that we see him, but we are convinced that she will in her time. It is not enough that she take our word for it because she needs to see him and and where he is for herself and this is a process that I believe must be respected by parents. But I will say that if the process drags on for too long, then you may want to reconsider whether that is correct Therapist for your child or not.

So for us, we are giving the process time while we gently give advice. We will see where it leads in another couple of weeks. John is performing more and more for her at every session. We will see how much she is listening to him.

So, my advice for weary parents that are going through this process is to choose a Therapist (Physical, Occupational, or Speech) that:

• loves children


• makes therapy fun


• motivates your child


• adjust the treatment to the interest of the child (almost anything can be turned into a treatment depending upon how you do it)


• listens to both client and parent


• can adjust to meet the need of the child and not just repeat the book format

I'm sure there are others, but these are important to me and my wife. As a consumer of health care, we need to take control of our health care and that means that we need to communicate. But we also need to have a health care provider that will listen to us.

Good luck to you and you choose a Therapist for your child. And remember - not all Therapist are created equal. There is more that goes into therapy than just learning from a book.

The Challenges of Having a 2 year-old...with Down Syndrome

John is now 2 1/2 years old and acts more like my other children did at this age than he acts different. He throws temper tantrums when he doesn't get his way or when we say no to him. He has a definite opinion about what he wants and will let you know if it isn't delivered. He is walking everywhere, although a little stiff legged and unsure of himself. Still, he is determined to learn walking as he picks himself up from a fall and keeps going. He is able to climb and get to anywhere that he wants to go including climbing up on the top bunk of his brothers bunk bed if we are not paying attention to him. His brothers and sister help keep him motivated and also the neighbor kid down the street that is closer to his age.




One of his favorite things to do is to take a bath. He loves to play with his toys in the bathtub and could spend a longer time in there than we allow. He really has some choice words for us (that are not understandable) when it is time for him to get out. It is pretty comical watching him but it has become a battle to let the water out of the tub because John has learned the function of the little stopper. We can pull out the stopper in the sink or pull up on the stopper in the tub and if we turn our backs, he will put the stopper right back to where that water is saved from going down the drain.




John is also acting more his age by eating everything in sight. His favorites are chips, whole bananas, hotdogs, pizza, and Chic-fila just to name a few of his favorites. He is now feeding himself and gets mad at us when we try and do it for him. John is a very independent little boy and for that we are very thankful. For the first year of his life, John wasn't independent and Joy and I had to waken him to change his diaper and feed him. What a different little boy than in those first months of life.




In those things, John is like any 2 1/2 year old. But the challenge for us has been his speech delay. John does make lots of sounds and does have about 17 words that he says consistently. But most things that he says, we just don't understand and that is a real frustration to both he and us. We are convinced that John understands things well enough to know that we can't understand what he is telling us which really angers him. For this reason, we have chosen to get him a speech evaluation which is another post by itself. I will just say to those of you considering this, be very selective in choosing a Speech Therapist. Ask questions of them and other patients of thiers if possible before you let them evaluate your child. Not all Speech Therapists or any other kind of Therapist are created equal when it comes to children. You will have a better therapy experience if you choose one that has pediatric experience. That is all I will say about that in this post. Maybe I will write another post about my thoughts and experience on that subject.




In all seriousness, his speech delay is our hardest challenge and that probably prompts us all to baby him just a little more than what we would normally. I love him more and more each day that I have him. It is very difficult for me as a dad though to not be able to communicate verbally with my son. I continue to pray that the Lord would give him speech. I know the Lord will hear my prayer and has a plan for my son that may or may not include verbalization. The Lord has blessed John with so much that we have more to be thankful for than not.

Thanks for reading and I hope that all of you are doing well and that your little ones are growing and learning and bringing happiness to you and others. I believe that that ability has been one of John's greatest purposes in life.