Understanding Social Cues

Today is Easter. Yesterday, our subdivision had an Easter party and mini-carnival in the nieghborhood park. Not only do I love these type of events because they are fun, but I enjoy watching children play. I think it is fun to watch the kids during the Easter egg hunt. And this year a little excitement was added when a baby rabbit jumped across the park, then 10 minutes later the mama rabbit jumped out too. The kids were squealing ecstaticly as they watched and chased the rabbit. Of course the kids were also happy to participate in the games such as the bean bag toss, "fishing", sack races, and the cake walk.

It was at the cake walk that I was in such a state of analyzation while I observed my son. At first, he was watching the other kids (including big sister) walk around the course of numbers as he sat in his stroller. Then they stopped and if their number was called out, they won a cake or other treats. Eventually, he repeatedly said "walk, walk", so I let him out of the stroller. My gut was that this 21 month old is going to run all around aimlessly. But he didn't. I was pleasantly surprised when he went over and joined the school-aged children at the cake walk. He even went the correct direction and walked about the same distance from the numbered markers as the other kids. What impressed me the most, is when the music stopped he looked around and noticed the other kids stopped at a marker. So he stopped and he stood there for about 2-3 minutes just like the others did. When the music began again, he participated again. I was in such awe that I didn't have to teach him how to participate; he just took social cues and used them correctly. I have 6 year old clients with developmental delays or autism spectrum disorders that don't know how to do this. It always amazes me how effortlessly a typically developing child learns to perform such skills. Maybe because I was an occupational therapist for 9 years before I had my first child, but I am always flabbergasted that such things don't have to be taught. This makes me appreciate the littile kids that I work with even more, because they have to work soooo HARD for every new skill they learn. And for many reasons, social skills are one of the last things to come along. Language and motor skills are often the focus of therapy initially. Later on, emotional, behavioral, and cognitive skills are addressed. But it takes all of these skills combined to have decent social skills. Whether it be reciprocating during conversation, imitating the action of peers, or not blurting out something inappropriate, social skills do not come easy to many young (and older) kids with disabilities.

Sometimes to work on client's social skills, I meet clients and their parents within the community such as at McDonald's (R) playground and parks. These places seem to always have other children present which makes it the perfect location to work on social skills. Sometimes, I have clients that progress to reading the cues of the other kids, but so often we are working on the basics such as waiting in line at the slide, not pushing or hitting other kids, and playing near other children. I do think however with repetition that many children eventually learn these skills, especially when imitation is a focus in individual therapy sessions. Those who do not catch on naturally over time may benefit from a social-motor group at a local therapy or psychology clinic. At first, the parents and therapist are exerting a lot of energy for the kids to play together. Over time, it is nice to see how the adults can back-off because the kids are improving...yeah!

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.

Adaptive Eating Utensils for Kids

I am enjoying that my 19 month old son likes to feed himself applesauce with a spoon. If I try to feed it to him, he clamps his mouth shut and turns his head. I love that! He may be messy, but oh well! How else can he learn if he doesn't practice? Toddlers should want to use a spoon on their own! But some toddlers aren't physically able, even if they are emotionally and cognitively ready to not be fed by an adult anymore. This is where adaptive utensils come into play!

The particular adapted spoon, fork, or spork that is needed depends upon the child's strength of upper body muscles, coordination, muscle tone, and range of motion. Some of the adapted utensils may have a: built-up (larger round) handle- foam or plastic, angled metal portion, curved handle, swivel metal, or weighted handle. So why are some of these utensils needed?

A built up handle is for someone with limited range of motion, abnormal muscle tone, or strength.

A weighted handle is for someone with ataxia or tremors as well as for someone with decreased sensation- the added weight lets them feel the utensil better.

Curved handles and angled or swivel metal utensils may be for someone with limited forearm, wrist, or finger active range of motion or limited control of muscles such as with tremors or spasticity.

Common diagnoses that use adaptive utensils include: Cerebral Palsy, Stroke, Muscular Dystrophy, Arthrogyposis, Brachial Plexus Injury, and many others.

Catalogs for therapy equipment such as www.sammonspreston.com sell numerous adaptive eating utensils. But I have found that sometimes you can use your own utensils and adapt them for a lower cost, depending upon the child's need. For example, if you just need a fatter handle, then try using rubber/plastic bicycle handle bars that can be found 2 for $1.00 at dollar stores; slip the spoon in the slot that would go around the bicycle handles. I've also used foam craft supplies along with electrical tape to creat a built-up handle; just wrap and tape. One that is real easy to use is Crayola (R) Model Magic (R) and shape exactly where you need the fingers to get support, and within a day the products dries. Only problem with this idea is it shouldn't get that wet or it can alter its shape. So you may not want a child who excessively sweats, drools alot, or is super messy to use this product.

I've learned as an occupational therapist to be creative with adapting feeding supplies and "Think outside of the box". Sometimes there just isn't a product already out on the market that can help a particular child. And sometimes, it's the parents who "Think outside of the box" and rig something up that works perfectly!

Helping Special Needs Kids Minimize the Risk of Contracting the Seasonal Flu & Swine Flu

Even though the swine flu is two words, these days it is as if it were a dirty four-letter word. If you have it or have had it, you know that people treat you as if you have the plague. Now, for you and I or people who are otherwise healthy, we are probably fine to catch it. But not so for many special needs kids especially those who are medically fragile or who have not-so-great immune systems. Knock on wood, I have had patients and relatives come down with it and even cough on my face as they were ill, and I still haven't caught it. Sure am glad I take my multi-vitamin and probiotics daily! Now, as sure as I type this I will start coughing and get body aches with a high fever, but I do think there are ways to minimize the chance that you catch it. Notice I said minimize, not a guarantee of not getting either kind of flu. I am not going to tell you anything awe inspiring that anyone else hasn't said: wash your hands many times throughout the day and after contact with a suspected or confirmed infected person, cover your mouth when you sneeze or cough, take your vitamins, eat healthy foods rich in vitamin C and anti-oxidants, etc, etc, etc.

But how can we minimize the risk of a kid with special needs getting either the swine flu or seasonal flu? Well, if you are a parent of a special needs child who is homebound, change clothes after coming home from work or the community, wash hands thoroughly with soap and water for at least 15 seconds, keep the house clean, and STAY away from hugging, kissing, or touching saliva if you have a fever, headache, body aches or any other symptoms. Doesn't this sound like common sense. You would think! But so many of us are so focused on caring for the children that we ignore a fever or body aches.

For children who aren't homebound, teach them to not lick/mouth on non-food items such as toys, because if they touch a toy after a sick child at preschool, church, or elsewhere has touched it, then "WHAMMO", the virus has a chance to attack the mouth! Teach the child to wash hands regularly or for the caregiver to remind and help the child wash hands. If you can avoid places with a bunch of children such as fast-food playgrounds, that might be smart to avoid during flu season. If you must go to those places, go at a slower time such as during the week as opposed to the weekend.

Getting the flu shot may be beneficial for some kids, but not an option for others. This may be due to allergic reactions to eggs or other vaccine ingredients. My children are allergic to eggs, so I can't really do much about that except to make sure they get lots of rest, water, fruits, and vegetables as well as supplements. This may help the immune system fight a potential invading virus. But if doing those things doesn't help your child, take him or her to the doctor at the first sign of the flu so Tamiflu (R) or other medications can be given if the doctor deems it necessary.

Surviving Birthday Parties with Kids with Special Needs

This weekend, my daughter is having a birthday party. It will be at a tea room and she is so excited about the tea party they will have there as well as the dress up, make up, nails painted, and other fun! I just bought the party favors this morning and I am ready for the party, except for making her the "special" cupcakes because of her food allergies- I will make those the morning of the party.



This gets me thinking of alot of the birthday parties I have attended of some of my clients, or where I have went to a party and a kid with special needs has been there. Parties are hard for many of these kids, especially if they aren't verbal or mobile, or get easily overwhelmed by the noise and movement of all of the other kids.



A couple of tips I see that have helped kids with special needs survive the party is:

• Prepare them for what will be happening at the party and talk about it or show pictures ahead of time. Consider making a story about it so the events aren't so unpredictable. If the party is at a facility or home he has never been to, show up a few days ahead of time to familiarize the child with the surroundings.


• Find out what is on the menu. If the child is a picky eater or has food allergies, make sure you pack snacks.


• Allow the child to not keep up with the others or sit next to the others if he is not ready. If he has difficulties transitioning from one activity to another, don't expect him to participate in all activities. His idea of fun may be different than the other kids' ideas of fun. If the child has poor balance or afraid he'll fall, then maybe being near the child or partnering him up with another "helpful" kid might make him more willing to participate.


• If he is slow to warm up, show up 15-30 minutes early to the party.


• If the child is overly sensitive to noises, go in another room or go outside while the "Happy Birthday" song is being sung or horns are being blown


• If the child is obsessed or "stuck" on a balloon or other birthday decoration, don't hesitate to let him play with it if the hostess is okay with that. If you know that this may happen ahead of time, maybe buy a special balloon for your child.

The Impact of Denying That A Child Has a Disability

Denial is one of the five stages of grief. It is how many people cope through the day; if they had to think of a "problem" or be realistic, then maybe they would "fall apart"; maybe not even be able to function through the day. Whether it be denying that there is a plumbing, marital, or workplace problem, eventually the truth will surface. Unfortunately, when denying (for a lengthy amount of time) that a child has a disability, developmental delay, or other special need, it is not helping the child any. I do believe that all parents will go through at least a short-term denial, and that is normal. But when it lingers to the point that the child is not getting the help that he or she needs, then I perceive that to be unhealthy.

Common things I see a parent denying is that:

• The child needs genetic testing or other specialized testing such as an EEG or MRI
• The child needs to see a specialist such as a neurologist, orthopedic doctor, psychologist, etc.
• The child has more delays in development than perceived by the parents. This may be as simple as the parent cancelling therapy (speech, physical, occupational, ABA) sessions often because they are not deemed that important or as complicated as the parent refusing to follow through with a school district's or health care professional's suggestions such as receiving special education services
• The child's need for a wheelchair. Even if the child learns to walk someday, they need an immediate means of mobility and to be upright for socializing with peers; mobility helps the child's self-esteem, endurance, and attention span

So why does this bother me so much? Well, so often I know the child could be functioning better. But also I know that one day when that child's legs are so stuck in a certain position that he needs surgery just to stay out of pain or when that child still can't read and write well in the 3rd grade, that the parents are going to regret the choices they had made 5 years prior. So many of the parents that either deny or just don't realize that the child's disability is as severe as it is, feel extremely guilty once reality hits. I especially find this to be the case with parents of children with autism or severe learning disabilities. They beat themselves up for not detecting the early signs or just blowing them off. I will sign off by saying if you have fallen to a bad case of denial, then first of all forgive yourself and ask your child for forgiveness. Then, move forward and be your child's strongest advocate. You can't ponder on the past, but you can change the future!