Bringing back fun

We have many medical and therapy appointments for our children and at times have been so busy focusing on getting it "all" done that we haven't taken enough time for ourselves or enjoying life.  The children need time to be kids and not just being transported from one appointment to the next.

In the past, for Children's Hospital visits, we made the mistake of getting up extremely early and traveling for multiple hours, arriving tired and cranky, only to return home after more travel, very late and exhausted.  After deciding that the trips to the hospital are inevitable but how we handle them is optional, we made the decision to make each trip a mini vacation.  Fortunately most of our children's hospital visits are for non-intrusive procedures leaving the kids able to participate in other activities either before or after the appointment.

Now when going to Children's Hospital we book a hotel arriving the day before the appointment and leaving the day after.  Did you know that hotels near various hospitals have a much cheaper "hospital" rate?  Also various medical plans and/or some government programs will pay a portion of the hotel cost.  These programs are a huge asset for families needing the hospital.  On our most recent hospital visit we were able to have 2 adjoining rooms for $19 each, with the support of these programs.  Some medical plans and government programs will also pay mileage and ferry costs (if required).  If you need to travel for medical appointments be sure to check what supports are available.

On our recent trip to Children's hospital we left home just after breakfast to travel for our medical appointments.  Upon arrival we had time for a relaxing dinner and then a swim in the hotel pool.  Swimming at the hotel pool is always a treat for our children since the majority of time they have sole use of the pool.  The next day we arrived well rested for our long day of multiple appointments, after 9 long hours we returned to the hotel for dinner and another swim.  Our final day of this hospital/mini holiday we spent at the local zoo before returning home in time for bed.

My hope is that when reminiscing about their childhood the fun activities stick out more than the multiple appointments with doctors and therapists.

Superpower for good or evil....what's your power?

If you could have a super power what would it be?  Would you choose super strength, maybe you would choose the ability to fly or what about telepathy?

My daughter has a very unique super power, whenever she sits in her wheelchair she becomes invisible.  Now to anyone who knows her she is not invisible but to strangers she is.  We will stop at a store or mall and if seated in her wheelchair people look away, won't make eye contact, or look at her as if they are looking through her and generally avoid acknowledging she exists.  When we are at a busy attraction, were either her Dad or I are pushing her in the wheelchair, people will walk into her and her chair, spill things on her or bump her with things they are carrying.  The majority of people do not acknowledge or apologize for doing this to her.

So far she hasn't been able too use her superpower for good or evil and with her autism she is probably more comfortable being invisible.  As her Mother I would prefer she doesn't practice her invisibility.  Quite often I will place my daughter in a shopping cart when we are out and the difference is tremendous.  People will talk with her, comment on how cute she is and generally engage her.  When in a shopping cart people do not walk into her or spill things on her.

Next time you are out and you see a child sitting in a wheelchair remember they are a child first.  Look them in the eye, smile and say hello.  This actually goes for anyone sitting in a wheelchair or using a walker because my guess is they all have the same superpower my daughter has.

Less pain more gain.....preparing children for the hospital

We are preparing for 7 of our children to see a team of doctors at Children's Hospital.  For our appointment we need to spend a day travelling each way so "hoteling" is also required.  Even when one child has an appointment we bring a support person which helps us focus on the child's needs and answering the doctors questions but with 7 being seen we will be bringing multiple support people.  This is going to be a grand adventure getting all of us to the hospital and through the appointments but we are hoping it will all be worthwhile and the doctors will provide us with some insight into our children's challenges.

It is important to prepare the children for a successful time at the hospital and with the doctors.  

Always tell your child ahead of time about any medical appointments or procedures.  You know your child best and know how much preparation time is required for your child to process the information and ask any questions they may have.

Prepare your child for their appointment by explaining what they can expect to happen and what is expected from them.  It is important to be truthful with your child, quite often children are worried if the procedure will hurt.  If there will be discomfort be honest and explain why it is required.  Depending on the procedure we will watch videos, read stories or role play to help the child understand what will happen.

Before the appointment, work with your child to find ways to help them be comfortable while at the appointment.  One of our daughters gets so worked up when bloodwork is required that it becomes more difficult for the lab technician and makes the procedure very traumatic.  We have found that practicing being still, deep breathing and relaxing has improved this procedure.  We also always bring a comfort item and something to do while waiting for the procedure.

During the procedure focus on distracting your child so the medical professional can do what is required.  Don't let your emotions get the best of you, stay calm, and reassure your child.  We usually chat about something fun we have recently done or something that's coming up.

After the procedure comfort your child and acknowledge their success.  Over the next couple days talk about the appointment, discuss why it was required and tell them what a good job they did.

We will be taking time to visit some tourist attractions and have some distraction fun also while away.  Getting to and from these appointments and the length of time at the hospital is extensive so we want the children to have some positive memories that hopefully out weigh the appointment.

Ahoy matey....Adaptive Sailing

We recently had 2 of our children try out "Adaptive Sailing"  and they had a blast.  They went out in "Martin 16 sailboats", these sailboats apparently cannot capsize or sink and are supposed to be safe in any wind or sea condition which made me more confident encouraging them too "set sail".  In each sailboat there was a volunteer instructor with each "sailor" and then there was also a powered "support" boat with an instructor that was giving direction to the entire group.  

Sailing, for people with disabilities, gives them sense of freedom and independence.  With the use of adaptive technology, people with significant physical limitations or cognitive limitations can compete equally with able-bodies persons.  This program was open to adults and children with visible or non-visible disabilities at a very low cost of $15 per 2 hour lesson.  This was the first time experiencing sailing for my children but with this program they can participate just to experience sailing, to become independent sailors or refine skills for competitive sailing.  

The weather for today's sailing was not ideal as there wasn't much wind but they were able to get out in the boats and the power boat towed them around the bay.  They also met some new people and experienced something different.  

We have tried out a few "adaptive sports" and I highly recommend them.  A lot of these programs are supported by very knowledgeable volunteers and I am thankful that they take the time to support individuals in these programs.  My children have been able to try new sports that we wouldn't be confident teaching them.  

Another benefit of participating in these types of programs is that it gives the family a small, often well needed, break.  We were able to sit on the beach and relax as they participated in this fun program, a win for all.

  

Life with friends is hard...a life without friends is tragic

Friendships can be difficult, for some our our children with special needs it can seem almost impossible.  Our children with special needs have unique barriers that make building friendships extremely hard.  As a parent it is our job to teach our children how to interact with others and having meaningful relationships.  It is also important for us to understand what we think a friendship.relationship should look like may not be the same as what our children need.

A few of my children have a very difficult time with relationships so we need to step in and assist them in learning these skills.

In order to make friends you need to be around people.  This can be a challenge if the majority of your child's time is spent at medical and therapy appointments.  It takes added effort ensuring your child has the time and opportunity to make friends.

Your child needs to be able to communicate with people to make friends.  Depending on your child's challenges this can be difficult, we have children with severe speech challenges so it has been important to give them the skills to communicate.  Our children use augmentative communication as a form of communicating but they need to feel confident with this method to communicate with peers.  Other children in our family have autism so role playing has been helpful in building communication skills.

The social skills of your child should be comparable to their potential friends.  Many children with special needs also have challenges with their social skills so it is important to work on these skills to broaden their friend pool.  We have used the Michelle Garcia, Social Thinking program to help teach our children these skills and have had them participate in social skills groups.  Being involved in activities and social situations also builds up these skills.

Your child's interests and physical abilities should be similar to their friends.  The 10 year old's in our neighborhood spend a lot of time outside riding bicycles and climbing trees, our daughter does not have the ability or strength for this which leaves her out.  Our 19 year old stills enjoys playing with dolls and the majority of her peers are going to college or out working.  When the interests and abilities are limited it may mean pushing the child and/or finding others with similar limitations. We had the children join some activities that helped match the abilities - for example our younger daughter joined a first aid group where they were all learning new skills and our older daughter joined Special Olympics which put them both in situations to meet potential friends.

The skills of being and making friends are just as important as walking, dressing and personal care so take the time to support your child in learning this valuable skill.

Puppy training as a method of raising children?

This week we started puppy school, we are taking a class that focuses on "clicker training and positive reinforcement".  Sitting through the orientation really reinforced the parallels between animal training and child rearing.  It also had me thinking about the added challenges when raising children that are adopted at an older age with behavioral challenges.

During this beginning stage of puppy training, we are not to use verbal commands with the animal and we "click" the clicker when the puppy does the desired behavior and give him a treat.  The idea is that the clicker will "mark" the desired behavior and the treat will reinforce the behavior.  This will encourage the dog to think about what it is you are wanting him to do and he will do it for you because he wants to please you.  At first I thought this was crazy (and still kind of do) but as I thought about it I can see where they are coming from in this approach.  With infants we spend hours cuddling and caring for them building up a relationship.  They are not verbal as an infant, yet we are able to learn what they want from their behavior and they learn from our behavior.  This type of approach isn't very feasible with an older child, in fact they would probably think you were nuts if you didn't verbally tell them your expectations.  Some may appreciate you not telling them what to do but they probably won't respond in the way you were hoping.

The second part of this method of puppy training is we do not discipline the puppy we are only using positive reinforcement.

Definition:
The adding of a result or consequence that the animal (or child) finds pleasant, dependent on the occurrence of a certain behavior or response by the animal (or child), which results in an increase in likelihood of that behavior or response in the animal (or child), because of the added result or consequence.  

When you have an infant that you are raising this method also works well because the infant hasn't learned any negative behavior yet.  The challenges are more difficult when you adopt an older child that may have many negative behaviors that go with some challenging diagnosis.  With the older child you do not have that time you would have with an infant building up that relationship in a nonverbal way so the "want" and "know how" to please you.  Quite often the older adopted child has mastered getting what they want/need as a means of survival and it typically isn't always in a positive manner.  With older children it is extremely important to find things that they do that please you and positively reinforce them.  You need to ensure that you don't get in a negative rut of constantly disciplining and correcting them.  Finding that positive behavior can be extremely difficult with some children but is so very important.  With a couple of our more challenging children we joined classes together learning skills neither of us knew.  We had an instructor teaching both of us so we were both starting from a similar position and were able to support and encourage one another.  This new skill was a basis for learning about each other and building our relationship in a positive manner.  We also had to spend a lot of time directing their play so they were doing something positive that we could truly "reinforce" in a positive manner.  When adopting an older child you need to find alternative ways to bond so you are able to learn what makes one another happy and  hopefully come to a place where you are wanting to make each other happy.

If only "positive reinforcement" was as easy as Sheldon makes it in this video clip.

I scream, you scream, we all scream for ice cream

Impromptu dance parties are a favorite for our family.  We have the different gaming systems with the "just dance" programs but have found the same "dance" videos on You Tube.  Watching them on You Tube is much quicker for us, our TV is connected to our computer so we can pull up videos within seconds.


It is very touching watching all the kids, no matter the age, dancing, singing and laughing together - ability and coordination doesn't matter as they are just having fun.

Today we decided to mix it up and had our dance party while making "Ice cream in a bag"

What you need:

Ice cubes (1/2 fill each large ziploc bags)
1/2 cup rock salt
1 medium size ziploc bag
1 large size ziploc bag
1 cup half and half
2 tablespoons sugar
1/2 tsp vanilla

Optional: 1 tsp chocolate syrup or strawberry syrup, for flavored ice cream.

Directions:
Combine sugar, half and half, and vanilla in medium ziploc bag then seal tightly.  Add optional flavors if you want a flavored ice cream before sealing.

Place salt and ice in large ziploc bag, then place sealed smaller bag in large bag.  Seal large bag.  Now shake the bags until the mixture hardens (about 5-10 minutes).  We danced while shaking our ice cream making the time go faster.  Feel the small bag to determine when it's done.

When done take the smaller bag out of the larger bag and enjoy your ice cream right out of the bag.