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.