Tuesday, November 9, 2010

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.

Friday, October 29, 2010

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.

Wednesday, June 30, 2010

Teeth and eating table foods

Getting teeth is something that has taken longer than expected for John. John began getting teeth after his first birthday, which is considered to be delayed for children getting teeth. He got his bottom front two teeth in first which is the normal progression for getting teeth. He then cut the top front two teeth which is also a pretty normal progression. After the front top and bottom, he then cut the top side teeth but then has stalled We are still waiting for the bottom side teeth to fill in, however he has started chewing on things on that side of his mouth. So we wait in anticipation they will come.

As he got more teeth, his ability to eat a variety of foods from the table broadened. However, he is very picky about the textures of foods and refuses to eat most table foods that our other children were eating very well at this age. Although he likes and eats some table foods, he still relies pretty heavily on jar baby food for nutrition. His meals consists of:

Brown Cow Yogurt this is a high calorie/high fat yogurt
#2 Jar food with any kind of meat
Whole milk in a bottle
Pizza (he loves to eat pizza with the others)
Chic-fila fries and chicken nuggets
Whole bananas
Potato chips
Diced fruit

We are constantly adapting to John's time as we are so programmed for milestones to happen just as we have seen from our other children. But we are continually learning that just as each child is different, John is no exception. Although his differences are a little more pronounced and often times ask us to step outside of our comfort zone. We are learning, however that when we do step away from what we accept as "the norm" for child development and work with him where he is, then he grows and matures just like my other four children - just at a slower pace.

We believe the Lord causes all things to work together for good to those that love him and we are challenged by God's gift (John) to us to "slow down" and stop pushing so hard.

May those of us with Ds children and non-Ds children as well learn to "slow down" and be content with a slower pace. Thanks for reading.

Wednesday, June 23, 2010

Hello Again!

I have been away from blogging for many months but have been busy with working with John as well as being Dad to all my other children. These months of being away from blogging my thoughts about raising a child with Down syndrome may have kept me away from sharing my thoughts with those of you that read my thoughts, but my family and I have continued to grow and learn so much from our little boy.

John is now 23 months of age is now working hard on walking independently. It has been very interesting to watch him as he has worked so hard on mastering this skill. He is very tenacious for which I am pleased the most for that characteristic. I think sometimes it is easier for children with disabilities such as Ds to give up easily because the skill is too difficult. As a Therapist and a parent, I believe that is where parents must be very involved in teaching the child not only the skill, but also the correct way, or should I say the more efficient way to perform the skill.

Although this is currently what John is working on, this has not come easily for John. Let me explain - when I stopped writing, John was still crawling with both legs out to side, or externally rotated at the hips. Seeing that this would develop into a larger problem with if not corrected, my family and I set out to help John to see that there is a more efficient way to crawl.

The therapy that was used to help him with this was to allow him to crawl up the stairs with our guidance. By crawling up the stairs, we would be with him making sure his hips moved his legs straight in up and down direction instead of moving them out to the side. This took extra effort on our part, but it paid off. Over the next 3 months, we noticed that John began to crawl by pulling his knees up under him.

He then began crawling all around the house as we had to learn to put him down on the ground instead of carrying him. As a family, we noticed that it was much easier for us to carry him because it was faster for us. But this did nothing to motivate him learn to crawl or eventually walk. At first, he would cry and pitch a fit for us to pick him up. But with being consistent in leaving him on the floor, he eventually got faster and more efficient with his crawling.

We are pleased that John has made the progress that he has made in this area. If I were to choose one thing that helped John achieve this goal, I would have to say that leaving him on the floor was a great motivator. At first, he didn't like it as much when we would leave him on the floor, but he now prefers for us to leave him alone and let him do it himself.

So let me offer the encouragement of letting them do it themselves even when they beg and pitch a fit, or despite the fact it would be much quicker to pick them up and carry them. You will not only be helping them achieve this milestone, but also giving them the quality of being able to stick to something until they have mastered the skill.