Access 2 Entertainment

We try and get out and about often with our family.  With the special needs presented within our family we are limited with the activities that some are able to participate in and the cost can also add up very quickly (even more so if you are a large family).  We frequently visit tourist attractions as this is something accessible to people with disabilities.  To help with the cost, the members of our family with disabilities have an "Access 2 entertainment" card.  These cards cost $20 and are good for 5 years.  In our country these cards are issued through "Easter seals" to qualified individuals.

Who can apply?
Persons with a permanent disability who require a support person when attending a movie theatre are eligible for the card. There are no age restrictions. The applicant (or guardian) must agree to follow the terms and conditions for use of the card.

With this card the patron with special needs pays the regular fee to enter the attraction and the "escort/support person" can enter free of charge.  This is beneficial because the person with the disabilities frequently requires one on one support.  For favorite attractions we will buy a season pass for the child.  Season passes for children at most attractions are inexpensive and paired with the "access 2 entertainment" card we can frequently enjoy these venues at minimal costs.  

The "access 2 entertainment" card also works at some movie theaters in the same fashion as it does for tourist attractions.  Here is a link for the attractions that participate in this program.  Whenever we go to an attraction we ask if they have a disabled rate and show them the card because quite often they will offer a disabled rate even if they are not part of the program.  

Another way that we have reduced this cost is by using the children's "special needs school funding" (we have access to this being a homeschooling family) to purchase season passes for the children to educational attractions.  We have been able to purchase seasons passes to museums, IMAX theater, aquariums, animal refuge, etc.  

I would highly recommend looking into this program or seeing if your community offers something similar.  The added benefit of being able to access these attractions at a reduced rate is if your child has an issue, that makes it that you need to leave sooner than intended, is that it hasn't cost you a fortune and hopefully you can try it again another day.  
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These boots are made for walking

Over the last few days 4 of our children went on a 3 day hike with their homeschool group, 2 are part of this group and the other 2 went as their support people.   They hiked 30 kilometers along the coast line while carrying all their gear.  For 3 of them this type of hiking was a first and while it was grueling in some parts they all stated they would do it again - after their legs recover.

Batting 1000!

Recently our 17 and 18 year old children joined Special Olympics.  We didn't know much about this program but in our search for activities to carry into their adult years this one stood out.  Special Olympics is a program for people with an intellectual disability usually determined by an IQ of 70 or below.  The programs offered by Special Olympics do vary depending on demand in different communities.  In our area the programs are for people 12 years and older.  Special Olympics has a wide variety of sports that they offer including swimming, skating, bocce ball, bowling, floor hockey, soccer, softball, etc.

We jumped in with both feet and are playing softball and soccer.  For our daughter this is the first time she has played any sports.  When she was younger her osteoporosis was so extreme it limited all activity, over the years it has improved and she has not broken any bones now for 5 years.  The coaches have been incredible, our daughter arrived completely clueless regarding anything about softball.  We had told her to grab a softball glove to take to practice, so she picked the one she thought was the prettiest looking.  Then on the way to practice she asks her brother "how do you use this?"  I was driving and didn't think much of it as he gave her lessons on how to put it on.  When we arrived at their first practice her abilities seemed worse than usual and as I am watching I realize she has a glove on for a left handed person and she is right handed.  I quietly mention to the coach some of the problem may be that she is "right handed".  After sorting that out the coach had her catching, throwing, and hitting the ball by the end of the evening.  This program is amazing, everyone is included, encouraged, and the coaches have the ability to break the skills way down so the athletes are successful.  

Another thing that I found incredible was the number of teen volunteers that were their helping with practice.  Some of these teens had siblings participating in the program, some were friends of these teens and some didn't have a personal connection to the group but just wanted to help.  One of my teens and a few of her friends also decided they would come out and help at soccer after seeing they required more help. 

Today the softball team was off for a tournament where they played 3 45 minute games throughout the day.  Our daughter was beyond excited as she has never been able to participate in this type of activity as an athlete.  The team traveled by bus with her Dad driving and the rest of our family, that was home, traveled up to watch and cheer the teams on.  Oh and by the way today she was batting 1000!!!!

shared at www.lovethatmax

9 Simple ways to build up documentation regarding your child's needs!

We have been busy with more assessments, in the last couple months we have had 3 autism assessments and 4 neuropsychology assessments.  It is a never ending cycle with complex children between being assessed, trying to get reports that support their diagnosis and trying to qualify/obtain support.  In order to obtain support in the form of therapies and/or educational assistance you need multiple specifically worded reports, that preferably aren't any older than 2 years old.

A lot of the time getting these larger assessments seems near impossible or is not financially feasible.  The waiting lists for our children to receive an autism assessment was 1-2 years depending on the child's age and that was the short list because they have a sibling with autism.  The neuropsychology assessments range in cost from $3500-5000 each which means finding a funding source to pay for these assessments.

To keep up with the demand for documentation regarding our children's conditions in order to gain educational and therapeutic support we need to be proactive.  We were extremely fortunate to receive these recent assessments however it took a lot of work getting to that place.  While waiting for assessments we gathered documentation on our children's challenges through other channels which aided in obtaining support and assessments prior to a full diagnosis.

9 Simple ways to build up documentation regarding your child's needs

Anytime you visit a specialist or your family doctor refers you to a specialist a letter is written - ask for a copy of this letter.  These letters will outline the condition that your family doctor wants your child seen for and the returning letter from the specialist will outline the findings and any course of treatment.

Anytime you are seen at a hospital emergency room or walk in clinic a report is sent to your family doctor - ask for a copy of this letter.

Every time a medical test is completed whether it is blood work, lab work, ultra sound, EEG, ECG, etc. a report is forwarded to your doctor - ask for a copy of these reports.  Having copies of any tests completed are beneficial when seeing any specialists so they don't need to reorder tests and can review the history.

If your child receives any therapy support (speech, occupational therapy, physical therapy, etc) ask for regular written updates and/or assessment reports.  Even if the public school system has your child seen by someone with in the school ask for a letter/report.

Keep copies of all report cards from school and any activities.  Quite often these reports have comments that help/support behavioral type diagnosis.

Keep copies of all Individual Education Plan's.

Ask for a written summary detailing everything discussed at meetings regarding your child. This is also beneficial for clarifying what you felt was discussed and agreed upon is what the other party also believes.  Also if you have any objections regarding what was included in the summary you can have it corrected.

Anytime there is a disciplinary or health related incident at the school or a community activity ask for a copy of the incident report.  These are beneficial in showing that the issues are happening in a variety of settings.

If your child is in the unfortunate position of requiring police involvement ask for a copy of the report.  Same goes for mental health.  You probably want to go back after the situation has been dealt with and ask for a copy of the report explaining that you are collecting information in order to obtain support for your child.

Store all of this information in a binder or folder that can be taken to any appointments.  It goes a long way in getting your child support when you can show documentation to support the challenges.

Trying out Vision Therapy

The other day we started "vision therapy" with 3 of our children.  I didn't know much about this type of therapy, but on multiple recent assessments, from a variety of professionals it had been recommended.  After doing a lot of research on the topic we decided it was worth setting up an appointment with a developmental optometrist to further investigate this as a method to help our children.

This type of therapy has been around since the early 1800's but was not  actively implemented until the mid 1900's.  One type of treatment used in vision therapy that you may be aware of is the patching of an eye when the patient has a "lazy eye".  Vision therapy is like physical therapy for the visual system, including the eyes and brain parts that control vision.  Unlike eyeglasses the vision therapy aims to teach the visual system to correct itself.  Vision therapy is a controversial topic in vision care with not all eye doctors believing in its effectiveness.

When we saw the "developmental optometrist" he did a variety of tests with the children, discussed their medical challenges and then discussed options with us.  Out of the 5 kids, 3 of them had 20/20 vision (which we were aware of) however they still presented with balance issues, coordination challenges, dyslexia, comprehension challenges when reading, head aches, double vision, etc.  The doctor tried different shaped lenses (concave and convex), prisms and filters in the form of glasses and with some you were able to see sudden improvement with their balance and ability to catch a ball.  The doctor was also very upfront and didn't claim to be able to fix everything.  He felt that by prescribing glasses with different shaped lenses he could give a slight improvement  for a couple children but until their seizures are under control he wouldn't do anything else.  For the other 3 kids he felt they would benefit from glasses that help work on the deficit present in their eyesight and 30 weeks of vision therapy.

At vision therapy the kids did different exercises with their eyes, for some exercises one eye was patched while the other eye preformed the exercise and some exercises included both eyes.  They did exercises involving reading up close and at a distance, for those who haven't mastered reading they used pictures.  They also worked on catching or hitting a ball (fortunately the ball was attached to a string suspended from the ceiling so it wasn't a game of fetch).  There was eye tracking exercises and a computer game also.  The hour long therapy appointment went by extremely fast and the kids enjoyed themselves.  We were sent home with homework that we practice daily until our next appointment.

We were told that we won't see immediate results but we are looking forward to positive results.  Have you our your child tried "vision therapy"?  How did it work for you?

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I will race you going poop

We are in potty training madness around here.  With four children, still requiring diapers full time we continue to have the hope/dream/desire that one day they will be toilet trained.  These four children have a variety of significant special needs and it has been thought by their medical team that they may never be able to be toilet trained.  I am encouraged by the fact that 2 of their brothers with similar challenges were successfully toilet trained, during the day, by the ages of 5 and 7 years.

There is a lot of literature available focusing on toilet training and there seems to be a general consensus that if your child exhibits these signs they are ready for toilet training.

Is your child aware of the difference between being wet and being dry? That's a NO times four here.
Can he stay dry for at least 2 hours at a time? One can but due to medical issues, not bladder control.
Is he capable of reaching the toilet or potty in time? (Perhaps with our help).  That's a yes with help.
Can he undress and dress himself or is he ready to learn? This is a skill that we have been working on with these four and it seems the youngest of the group is the most successful at dressing, in a limited way.
Is he motivated at some level to take this next step?  I really don't feel that these four are motivated to be toilet trained but they are motivated to sit on the potty because it looks like a fun thing to do especially when a sibling is doing this.

There are many thoughts on how to train your child and having tried multiple methods, we have narrowed down to a method that is manageable for us.  The children sit on the potty when getting up in the morning, when getting ready for a bath and when getting ready for bed.  My 2 1/2 year old shadow, is only allowed to follow me into the bathroom, if he sits on his potty while I am in there.  We use this method ongoing even when we aren't "actively" potty training.  Our thought is that the children will learn the motions and become comfortable with what is involved in using a toilet.  While following this plan they are dealing with many sensory and balance issues on top of the toileting issues.

Every 4-6 weeks we "actively" work on potty training for 2-3 days - armed with big boy/girl underwear, multiple changes of clothing, cleaning supplies, a carpet cleaner and hopefully enough patience to survive the next few days.  If this stage produces even the slightest glimmer of hope we continue, if not we resort to the more laid back approach and diapers.

This go round the 5 and 8 year old are both very hopeful that their bodies will give the desired results.  They will sit for hours, next to each other on the potties if you let them, chatting away.  While sitting last night one said to the other "I will race you going poop"  the other eagerly accepted the challenge unfortunately neither have the muscle control required to complete the race (both are medicated to have bowel movements).  The positive sign is that they know why they are sitting there and we will continue praying they can eventually become toilet trained.

Sensory play, not just an opportunity to make a big mess!

Time spent playing at the sensory table is always a favorite option around here, no matter the age of the participant.  Our sensory table is changed regularly to provide different experiences - this past weekend we made "snow" and as we rarely get the real stuff,  it was appreciated even more so. Today's "snow" was made with lightly scented shaving cream and baking soda, once mixed together you can form it or play with it loosely.   Not all were impressed at the beginning of this experience, as their tactile defensiveness really comes into play when presented with wet things that stick to your hands.  The benefit of the "snow" was it pushed their tolerances at first but was appreciated more so once the baking soda mixed thoroughly into the shaving cream.

People with special needs may not always be able to process information given to them through one or more of their 5 senses.  By encouraging sensory play we are giving extra time and experiences to develop their senses through a fun way.

While playing with the "snow" we:
Practiced speech and communication skills
Spent hours mixing, molding and building that worked our fine motor skills
Developed cooperation and collaboration skills as we played together
Discovered as we used our senses touching, seeing, smelling, and listening (while we were encouraged NOT to taste this "snow")
Relaxed as it is nice just running your hands through the "snow" especially when it's not the frozen outside variety

After the novelty of this "snow" faded we added new life to this "play" with vinegar colored with food coloring and eye droppers.  With a variety of colors the children were able to experiment with mixing colors while the vinegar and baking soda would react causing bubbles.  Using an eye dropper to add the vinegar strengthened our "pincher grasp" (fine motor skills).