Therapy!!
Last week we started Hunter with an additional PT. I couldn't believe the difference in the style of how his therapy was done. Instead of just observing him, and doing a few small things...this therapist worked my little boy until he was out of breath!! Not in a bad way, but it made me realize how many things he is lacking in yet.
She was also more positive than I remember her being. You see, this is the same therapist that we saw in the NICU. She was a bit more stern there, and not as positive about his diagnosis. She made it seem as though he would never be able to do much of anything. I asked her about this during his session, and she apologized profusely, and stated that she never intended to come across that way, but didn't want to give us false hope that this long road was going to be paved with gold, and full of unicorns and sunshine. It's a HARD road, and we needed to know that. I appreciated her honesty, and watching her with him, she is fantastic!!
This led me back to Birth to 3. I ADORE his therapists with B23. They are all wonderful people, but never seem to do much with him. So, I contacted the administrator, and told her of my experience with Aspirus, and that I would like to give him a chance at both services. She explained that many parents decide to do it that way, and it is no problem. She also told me that the premise behind both services is completely different. Birth to three is FAMILY based. Meaning, they show you what to do, and expect that YOU will perform the therapy. They are also not there to keep the child 100%, they are there to keep them from worsening. Therapy at the hospital is MEDICAL based, meaning, they focus on the patient and do whatever it takes to get them 100%. I wish I had known the difference sooner, because I would have integrated him to the hospital therapy right away. I guess I was under the impression that we couldn't do both. In two sessions of therapy at the hospital, I'm already seeing vast improvements, and learning many more different exercises to do with him.
I have been frustrated lately at his inability to still fully control his head. His hospital PT explained that he has very good neck control...but it is his shoulder strength that is lacking. Until he has that strength through his shoulders and upper back, his head control is going to be less than optimal. She was amazed at how wonderfully he has progressed and rates him at 'above average' for a child with DS (she stated that if you can keep your child with DS developing at 50% of a typically developing child, that is considered the average. Hunter is developing at 75%). After talking with this woman in the NICU, I know she would not just say this to make me feel better. It was a good feeling to know that our work with him is paying off. A small win is better than no win at all!! She also warned us that the gap is probably going to really start increasing now, and to not get too upset by it. Typically developing children starting making LARGE strides in development from now until 18 months. He will probably not make huge leaps, but still progress steadily, at a slower pace, which will make the milestone gap much larger. Knowing that is our "normal" will help...and being warned beforehand has given me the ability to brace myself and not get too down on things.
Last night as I worked with him on the floor, I noticed that he is very close to being able to sit unsupported. He just has to work a little more on balance, and I think with his head control getting better every day, that it wont be long until my little man will be able to sit for short periods of time by himself!!
We have our first evaluation with the hospital's speech therapist on Monday of next week. I'm very much looking forward to this visit, because we are having SO MUCH trouble getting him to eat baby food and cereal. The second anything hits his tongue, he shoves it out. Many kids with DS have issues with sensory "overload." Many can't deal with loud noises, crowds, visual stimulation...anything that is too much at once. It seems like Hunter has that issue with things in his mouth. Anything that is not his hand is too much for him, and it bothers him to the point of tears. We work with him all the time, but it never seems to improve. I am hoping that another viewpoint will help us figure out a way to get him past this aversion. God knows his formula bill is getting incredibly expensive...and being able to balance that out with food is going to help us to no end!! Plus, I think that once he starts eating solids, he will fill out a little more. He is still such a little peanut!!
There are other things on my mind, but this post has already gotten too long, so I think I will save those other thoughts for another day. Until then...
Love, Happiness and Pethair,
Shannon
She was also more positive than I remember her being. You see, this is the same therapist that we saw in the NICU. She was a bit more stern there, and not as positive about his diagnosis. She made it seem as though he would never be able to do much of anything. I asked her about this during his session, and she apologized profusely, and stated that she never intended to come across that way, but didn't want to give us false hope that this long road was going to be paved with gold, and full of unicorns and sunshine. It's a HARD road, and we needed to know that. I appreciated her honesty, and watching her with him, she is fantastic!!
This led me back to Birth to 3. I ADORE his therapists with B23. They are all wonderful people, but never seem to do much with him. So, I contacted the administrator, and told her of my experience with Aspirus, and that I would like to give him a chance at both services. She explained that many parents decide to do it that way, and it is no problem. She also told me that the premise behind both services is completely different. Birth to three is FAMILY based. Meaning, they show you what to do, and expect that YOU will perform the therapy. They are also not there to keep the child 100%, they are there to keep them from worsening. Therapy at the hospital is MEDICAL based, meaning, they focus on the patient and do whatever it takes to get them 100%. I wish I had known the difference sooner, because I would have integrated him to the hospital therapy right away. I guess I was under the impression that we couldn't do both. In two sessions of therapy at the hospital, I'm already seeing vast improvements, and learning many more different exercises to do with him.
I have been frustrated lately at his inability to still fully control his head. His hospital PT explained that he has very good neck control...but it is his shoulder strength that is lacking. Until he has that strength through his shoulders and upper back, his head control is going to be less than optimal. She was amazed at how wonderfully he has progressed and rates him at 'above average' for a child with DS (she stated that if you can keep your child with DS developing at 50% of a typically developing child, that is considered the average. Hunter is developing at 75%). After talking with this woman in the NICU, I know she would not just say this to make me feel better. It was a good feeling to know that our work with him is paying off. A small win is better than no win at all!! She also warned us that the gap is probably going to really start increasing now, and to not get too upset by it. Typically developing children starting making LARGE strides in development from now until 18 months. He will probably not make huge leaps, but still progress steadily, at a slower pace, which will make the milestone gap much larger. Knowing that is our "normal" will help...and being warned beforehand has given me the ability to brace myself and not get too down on things.
Last night as I worked with him on the floor, I noticed that he is very close to being able to sit unsupported. He just has to work a little more on balance, and I think with his head control getting better every day, that it wont be long until my little man will be able to sit for short periods of time by himself!!
We have our first evaluation with the hospital's speech therapist on Monday of next week. I'm very much looking forward to this visit, because we are having SO MUCH trouble getting him to eat baby food and cereal. The second anything hits his tongue, he shoves it out. Many kids with DS have issues with sensory "overload." Many can't deal with loud noises, crowds, visual stimulation...anything that is too much at once. It seems like Hunter has that issue with things in his mouth. Anything that is not his hand is too much for him, and it bothers him to the point of tears. We work with him all the time, but it never seems to improve. I am hoping that another viewpoint will help us figure out a way to get him past this aversion. God knows his formula bill is getting incredibly expensive...and being able to balance that out with food is going to help us to no end!! Plus, I think that once he starts eating solids, he will fill out a little more. He is still such a little peanut!!
There are other things on my mind, but this post has already gotten too long, so I think I will save those other thoughts for another day. Until then...
Love, Happiness and Pethair,
Shannon
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