Friday, March 26, 2010

CLASS: community living assistance services and supports

If it weren't for the recent healthcare reform bill, many Americans would shrug their shoulders if you asked them if they knew what the commnity living assistance services and supports (CLASS) program was. In fact, some of them still don't know what it is, mainly because the healthcare reform bill is over 2300 pages long, so who could expect them to understand every single detail?!? But this post will not get into my positive and/or negative thoughts on the bill. I am just motivated to blog on the CLASS program.

Although it is a federal program that provides long term care for mentally and/or physically disabled Americans, each state varies a bit in how they handle enrollment and other details. Information on the criteria for who qualifies can be found on this government link:
http://www.retiredamericans.org/ht/a/GetDocumentAction/i/12355 and http://www.kff.org/healthreform/upload/7996.pdf

What is consistent across state lines is that it helps with the long term needs of the individual. It may include payment for adapted feeding equipment, respite, physical/occupational therapy treatments, wheelchair and accessories, and modifications to a home/apt. By keeping the individual with special needs as independent as possible, it is believed to help in numerous ways, and possibly save the taxpayers money because the individual is overall healthier and less dependent upon caregivers. I have had the honor of providing therapy services to young adults with cerebral palsy in which CLASS paid for it. The only thing that seemed to be a bit burdensome is when I ordered adapted feeding equipment or computerized assistive technology, it took many months for the paperwork to be processed and items to be purchased. But hey, at least it got paid for eventually, and these young adults wouldn't have had the money to pay for it on their own otherwise.

I presently work as an occupational therapist with infants and toddlers, and at times am doing case management (social work) with families too. One of the things I encourage families with children with developmental disabilities (cerebral palsy, down syndrome, CHARGE, etc) to do is sign up for the CLASS program. They can sign up on the waiting list for more than one company that sponsors it, but once they're application is being processed they can only go with one facility. I say to go with the first place that calls you, or at least in my area. One place I know off of the top of my head that offers the programs is MHMRA. In the state that I live in sometimes it is 5 or more years before the child's application gets processed and they begin the CLASS program. Some states are quicker, probably depends on funds and populations...not sure. It seems so weird to rush these parents of babies into signing up for various programs when they have barely grasped the reality that their baby will have a permanent disability. But if they wait to sign up for it when they need it, then they'll be disappointed of the waiting period. There are numerous other programs that I encourage people to sign up for, but I think every state is so different in what they offer. I encourage parents to find a case manager if they don't already have one. They can really help you navigate the world of special needs programs. And it looks like after the healthcare reform bill is in effect, there will be changes to the present programs as well as new additional ones.

Thursday, March 18, 2010

Defying Gravity...Carnivals Should Be Fun!

Today my family of four along with my sister-in-law went to the carnival. Within the "kiddy" section, there were simple rides like the carousel but there were some more gravity-defying rides as well. My husband enjoyed riding the rides with my 6 year old daughter while my 21-month old son stayed in the stroller and I took pictures of everyone. But I did manage to get on one ride with my daughter, and boy was it fun! It was a ride that went in a circlular pattern while the kids/adults layed two people to an "airplane". While on our airplane, we were lying on our bellies and strapped in from behind. Not only did the ride go in a forward circular pattern, but it also went up/down making you feel as if you were "losing your stomach". Now, I grabbed my little one's hand, because I was thinking she may freak out. But I was wrong, she squealed with laughter. She had so much fun! And she should have. Once kids are of a certain age, they should think it is so much fun to move in various ways against gravity. It is not uncommon to see a toddler trying to be upside down off a couch or jumping off of furniture!

There are five directions to move within space: up/down, forward/backward, circles (rotary and axial), upside down, and sideways. Swinging on a swingset back and forth is a simple way to move, whereas riding the carnival ride today as described above was more complicated because it combined movements. When we move in these various directions, vestibular receptors in the inner ear are stimulated. The vestibular system can be a tricky sense. When a person has an ear infection or vertigo, this system can go haywire and throw the person's balance off. It is quite scary to feel off balance. That is why some kids with vestibular disorders don't like carnival rides. In fact, some would probably whether do anything but get on that ride!

If you have a child who doesn't like to play at the park on the swings, slides, or climbing devices, it is possible that he has difficulties with vestibular processing. If the child also has a gross motor delay or falls often, this should be discussed with the child's physician. Physical or occupational therapy services may be necessary to help the child. It may seem trivial when the child is only 2 years old, but if the problem is not corrected, the child ends up being a grade schooler who can't ride a bike or roller skate with his peers. He may also be the type who is clumsy, making him be the last one chosen to play games during school recess such as for soccer or dodge ball. If you suspect that your child has problems with vestibular processing, it is definately worth checking out.

Some other signs of the problem could include: low muscle tone, delayed development with two handed activities, clingy to parent when should be playing with peers (especially at birthday parties), fatigues easily, scared to sit in chair or on potty due to dangling feet, short attention span, and delayed eye-hand coordination. Those were all symptoms of kids who are over-responsive to vestibular input or who have sensory based motor disorders. Kids who are under-responsive are more lethargic and passive. Kids who are sensory seekers are described as the energizer bunnies and can never seem to get enough movement unless they are asleep. Some of these kids are even known to tire out the family's energetic dog! They tend to jump from high surfaces, fidget, and spin around. All of this over activity needs to be directed, especially if the child has a language or fine-motor delay. These children may or may not have a sensory processing disorder (SPD, AKA sensory integration dysfuncton), but should be checked out by a therapist. I don't think that every child with the above-mentioned symptoms necessarily has a vestibular disorder, there could be other things going on including neurological deficits, other disabilities, or environmental factors. An example of an environmental factor is lack of or decreased stimulation such as being at home all day with a mom who is on bedrest and can't help the child get the necessary exercise he needs, so he overly seeks out movement such as jumping off of high surfaces. This is the case where it is well worth it to pay extra for a young babysitter to come over to play or to invest in a mini-trampoline for the living room. So, not every referral to a therapist will mean the child needs intervention, but maybe at least some ideas can be generated for helping the child.

Thursday, March 11, 2010

Understanding Baby's Signals

By no means am I the baby whisperer, but I'd like to think that I am pretty good at reading cues babies give off to let us know their needs. For example, sucking on their fingers indicates that they are hungry whereas having irregular breathing can indicate they are drowsy. I think that this is important for new parents to understand, especially when it comes to understanding why the baby is crying. Afterall, not every tear shed from the baby means they neeed a bottle!

Instead of re-writing every signal babies tend to give off, I am providing links to a couple of sites that do a good job of explaining this already



http://www.sense-ablebaby.com/Our_Baby.html#Infant_Sleep_&_Wake_States

http://www.uihealthcare.com/depts/maternitycenter/newborninfo/signals.html

Sunday, March 7, 2010

Liquid Needs for Children

In the next room over I hear my toddler son requesting for a "deen". Translation = drink. If I let him, he would graze all day with a cup in his hand...not a good habit to create. Especially since he is at the low end of the chart on weight for his age. And I notice that the days I inadvertently give him too much liquid, he doesn't eat as much. So, I try to stick to liquids at meals and snacks, and other sips here and there.

One thing I get asked alot at work is "How much liquid does my child need?".
Well, that's a great question. If kids are eating lots of fruits and vegetables, then fluid is in those foods as well. So, it's not as simple as saying how many ounces of fluid should be in their cups. It can be a fine line. Don't give the child enough fluids and they get dehydrated...especially in the hot, summer months. Give the child too much fluids and the result is more difficulty with potty training and the child eating less food. This sounds like a trivial issue for some people, but for the kids I work with that have special needs, it can be a complicated topic. Many of them have a diagnosis of "failure to thrive" with the threat of a feeding tube hanging over their heads. In these cases, the parents and caregivers are counting every calorie. Especially for my little ones preparing for heart surgery who are burning calories at a faster rate than typical.

The rule of thumb is: 2-2.5 oz of fluid per pound of body weight is needed for an infant and 1-1.5 oz of fluid per pound of body weight is needed for children. The differences are due to toddlers and older kids eating table food, in which many foods have fluids within them. Examples include apples, soup, tomatoes, etc.

Now this is not always the case. Some of the kiddos that I work with are on high calorie formula and may not take in as many ounces of liquid for various reasons. Also, babies with severe infant reflux may spit out alot of liquid...this can be a fine line too, because if these babies are overfed to make up for the fluid loss, then they will just spit it up again!

Well, there is not a simple answer in terms of how much exactly a child's cup should contain and how many times a day. But, hope this entry helps give a baseline!

Thursday, March 4, 2010

Apraxia of Speech

http://www.apraxia-kids.org/site/apps/nlnet/content3.aspx?c=chKMI0PIIsE&b=699375&content_id={77B3D5EE-D59D-4198-8F68-D4925C00354B}¬oc=1

This article explains that using repetitive books to help with apraxia of speech is beneficial. My two favorite repetitive books are Goodnight Moon & Brown Bear, Brown Bear. Although I am not a speech pathologist, I work with many children with dyspraxia of the body and apraxia of speech. I definately think repetition and predictability help these children to gain new skills.

My daughter loved her "Goodnight Moon" book so much, that we wore two of them out, and I had to buy a third. Through repetition of reading it to her, and her looking at the pages often, she pointed out to me that the mouse is in a different location on each page. Pretty good of her to have noticed that at the age of 2 years. But I'm sure that if I had not read that book over and over to her, she probably wouldn't have noticed it!

Friday, February 26, 2010

Simple Strategies to Help with Plagiocephaly

Plagiocephaly is a fancy word for mis-shapen head. It can happen for many different reasons in a small infant, especially since their heads are malleable and change shape easily.

My now 20 month old son had a slighly flat spot on the back of his head because he was positioned upright and reclined which put pressure on his head. We had to position him like that due to his severe reflux. I think the flat spot would have been worse had I not put him in "tummy time" so much of his waking hours. Of course, I couldn't lay him in this position until at least 45-60 minutes after a feeding or he would vomit. Once he got around 5-6 months of age, he would roll over and sleep on his tummy. By 7 months he was crawling. These things in addition to all of the reflux medications he was on contributed to a better head shape by 8-9 months of age. His head shape was never severe enough for a helmet. But I explained his situation to indicate how easy it is for a child's head to get mis-shapen and back to being okay.

Often, a baby with torticollis or neurological damage is prone to plagiocephaly. Also, babies with medical problems who aren't able to move age-appropriately, such as preemies, those with heart defects, and babies who have had multiple surgeries. Another reason can be being a multiple (twins, triplets, or more) or a large baby born to a petite mom; this is because there isn't as much wiggle room and they may get stuck with the neck and head in an awkward position.

If your child has been diagnosed with plagiocephaly then hopefully he/she is getting occupational and/or physical therapy services. Therapy can help with neck/trunk strength, stretches, and massage as well as helping with any necessary adaptive equipment to help reposition the baby.

Some simple strategies to help when the head is mis-shapen on the left or right side:

-switch the way the baby is carried, sometimes over the left shoulder and sometimes over the right

-switch the way the baby is held when being fed, sometimes on your right side, other times to your left side

-when using a changing table for diapering, alternate which end the baby's head is at, this helps the baby to look in different directions

-move positioning equipment within the room: bouncy seat, bouncers, swings, etc. so that the view is not always the same for the baby

-when approaching the baby as he/she is in a device or on the floor on a blanket, come from different directions to help the baby look to each side as well as overhead and to the front

-don't sit the child in a Bumbo (R) seat or standing bouncer before he/she has the trunk control to be in it. This is also the case with Jumparoos (R) and Johnny Jump Ups (R). If the baby doesn't have enough trunk or head control, then he will lean to the side which only perpetuates the asymmetry of the head

-offer the baby toys to each side of him wherever he is: swing, floor overhead gym, carseat, on tummy on blanket on floor, etc.

-get down on the floor and play with the baby, sometimes be on his right side, other times on the left or to the front

-infant massage indirectly initially such as to the belly or legs, and then if tolerated to the chest, neck, and arms

-follow through with all exercises/stretches given by the PT and/or OT. Be careful about getting aggressive stretches off of the internet, because depending upon the etiology of the plagiocephaly these stretches could be hurting the baby

Final thought: if your child's doctor prescribes a helmet to help with head shape, then by all means get a helmet and use it the suggested wearing schedule (usually 23 hrs a day). I have seen some amazing changes in head shapes of babies with helmets.

To see pictures of plagiocephaly and helmets, visit www.cranialtech.com

Friday, February 19, 2010

Helping Young Kids Speak Through Singing

My family has a joke that none of us can stay on tune while singing, but oh well, we still like to sing. But I have to admit, I don't sing as loud at church as I do in my car, because I don't really want people looking around and thinking "Who is that really off key singer?". Not that others would judge, I just play it safe.

My two kids and many of the infant/toddler clients I work with (in occupational therapy) enjoy singing. I actually don't mind singing loud around small children, especially since they don't expect me to be as good as if I were auditioning for American Idol! In fact, many kids I work with start to say simple words from a song before they speak to express their needs and desires. Singing is what "gets the ball rolling".

My son is now 20 months old and is speaking quite a bit. He has at least 50 spontaneous words and others that he will repeat when asked. But I think back to before his first birthday, and he loved for me to sing "Itsy Bitsy Spider". As he got older, he tried to imitate the hand motions and sing a word or two. But before he was saying some of the words, he would stop and really listen. Other times he would dance or sway and even try to hum. This let me know he was really into the singing. One technique I used with my son (and some clients) is sticking to just two or three of the same songs/verses and repeating them often. Then, I would intermittently pause to see if he would gesture me to sing more or even better yet to see if he would try to say the next word as if he was "filling in the blank". This is one of those techniques that takes a bit of patience, because it can be mundane to an adult to sing the same song day in and out. But small children need that, that is how they learn. When choosing a song, choose one with a simple repetitive rhythm such as "Twinkle Little Star" or "Wheels on the Bus". These two are also nice songs to teach because they have hand motions to go along, and some children may start by imitating the body action before saying a word. And that's okay, at least it is some sort of participation that lets you know they are absorbing the cognitive component of a song.

So often when a child has a speech and language delay, the family and caregivers can hardly wait for the child to start expressing his needs. I don't blame them, it can be frustrating when a tot throws a tantrum because you have no idea what he wants. For some kids, using some basic strategies to get them to talk works, and before you know it, they are letting you know they are hungry or want to go outside. But for other kids, strategies have to be a bit more sneaky and fun. Well, what can be more fun than singing and playing while doing it! I love to use "Ring Around the Rosie" with older toddlers because they love to run and "crash" onto the floor. One thing I do is to just sing it normal for 1-2 rounds, and then after that I don't crash or have them crash to the floor until they say "down" during the last part of the song that goes "we all fall down!" For a child with a severe speech delay, they may only grunt for the word down and for a child with Autism Spectrum Disorder they may simply give me a glance, but it is a start. A glance is a form of communication that can be shaped eventually into words or higher forms of communication...and to think, something as simple as a song can be that powerful!

Some days at work I feel like I have sang the same song WAY too many times. Other days I am so glad to be singing those wonderful toddler tunes. Maybe that is why I am guilty of listening to toddler CDs in my car even when the children have been dropped off at school and the babysitter's home! The slightly funny thing is that I have more of my children's music CDs in my car than I do of my own! At least my iPod has absolutely no toddler tunes...that might be kind of taking it too far if I did!