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!!!!

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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).

Petitioning for a 30 hour day!

With the business of life everyone is trying to find ways to save time or be more efficient.  We have found a few things that work for us:

Meal planning - in order to save time and money it is essential for our family to plan ahead.  Before planning our meals each week we take a look at the calendar and consider the time available each day for meal prep.  Once we have determined what the week looks like we plan meals accordingly.  On days that we are running from one appointment to the next dinner will be cooked in a crockpot, a quick barbecue or maybe a pre made casserole.  I can't express how much of a relief it is to walk in the door after a crazy day and dinner to be ready to serve. 

Doing the prep work for meals can be done anytime, it does not have to be done the hour before dinner, so take advantage of the time you have.  Review your meal plan and try to simplify your meal prep by combining tasks required for the weeks meals.  We also will "double" certain meals and freeze the second one to enjoy on a different day.  We will also cook meals with the plan of having leftovers for lunch the next day.  

Pack ahead - with many weekly activities we have to pack/prepare for the daily events.  We pack once, after the activity we repack the bag for the next week eliminating the weekly search for the required gear.  We have swim lessons (for 6 children) weekly so our swim bag is packed and ready to go - when we return everything is thrown in the laundry then returned to the swim bag for next week.  For activities that require uniforms we store all the parts together in a suit bag, building routines for caring for the uniforms saves time in the long run. 

 Taming the housework - keeping the home looking presentable can also be challenging and a huge drain on time.   Really in order to keep your home clean your options are somewhat limited, don't live in it so it can't get messy, clean it or have someone else clean it.  We do multiple mini clean ups throughout the day, by doing many cleanups the house doesn't get to out of control.  Everyone that is capable of making a mess is capable of helping clean up.  We get up, get dressed and do a quick bedroom clean up.  After breakfast we clean up and put dishes in dishwasher.  We continue the trend of cleaning up as we go throughout the day, it doesn't have to be perfect but done often enough will stay fairly clean.  Using "Lysol wipes" to quickly wipe down the counter and toilet in the bathroom a couple times a day keeps it presentable, I usually do this after using the bathroom and make a point of alternating which bathroom I use.  Also a "scheduled" chore time is helpful for ensuring everyone is an active participant.  At our house after dinner for about 20 minutes everyone has a chore, Mom and/or Dad help and ensure everyone does their assigned chore.  We also have clear expectations typed out so everyone knows what needs to be done, this is handy when ensuring the task is complete to our standards.

 Dishes -  we cut back on the number of glasses/cups being used daily by having a shelf for people to store their cups between drinks.  We also wash dishes as we are prepare meals which makes for a quicker final cleanup.                                                                                                                                          

Laundry is a never ending challenge as the "laundry monster" takes over so that will be a separate post.

I am sure that you have little things that help save you time throughout the day, please share them so we can all benefit.

Inclusive outside play

I love this time of year, getting outside this spring is a very welcome activity after a long cold, wet, dreary winter.  It is an added bonus, after an extended cycle, of multiple daily seizures, that just didn't seem to want to stop for one child.  Getting outside and playing does wonders for childhood development.   With our developmentally delayed children getting out and playing helps master skills that the physical and occupational therapists are working on with the child but the best part is their happy smiles.

With multiple needs within our family sometimes it takes getting creative so everyone can enjoy outside play.  At home we have built our play area trying to meet everyone's needs.

We included activities for the mobility impaired - a wheelchair accessible sensory table provides endless hours of fun.  An outdoor "music" play area, a chalkboard, easel, special needs swings and a tether ball.  How about an outdoor garden that your child can sit at for hours of imaginative play?  We made this one adding landscape details around a variety of small toys.

Our playground has also been "overbuilt" for added strength.  Having young adult children that are cognitively functioning much younger means they still want to "play".  Swings that support an adult, a trampoline, bars high enough off the ground for an adult to hang from (but safe enough for younger children), a rock climbing wall and a climbing cargo net.

All of these adaptions have been added over time and make for a playground that can be enjoyed by everyone.  What have you done to encourage play with your children?
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Red lights and Sirens

When adopting a child into your family you need to consider that they may have had traumatic events in their past which could result in a variety of fears.  A few of our children were scared of anyone in a uniform and all emergency response vehicles, the sight or sound of either would put them into a state of panic.  The children although older in age were unable to tell us why they were fearful, but after piecing together their past we were able to come up with some ideas.

Helping the children with these fears meant teaching them that the emergency personnel and their vehicles are there to help us, along with working through the personal issues that happened, creating these fears.  We made a point of putting our children in positive situations where emergency personnel were present.  These situations ranged from going to our local garage where the police and fire vehicles are repaired and just walking near the vehicles, to arranging visits at the police, ambulance and fire departments, to attending Emergency Preparedness fairs and other community events.

At the most recent Emergency Preparedness fair we attended, we toured the ambulances, sat in the fire trucks, and met the police and their dogs.  Firefighters taught the children how to use a fire extinguisher and they had the opportunity to extinguish a fire.

  There was a group teaching road safety and the children were able to ride peddle cars while practicing their skills.  We also met the search and rescue people and learnt a little about what they do.                             

This was a fun non-threatening way to interact with people they once feared.  How have you helped your children work through their fears?             

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The plan is not to scar the innocent

Going most places with our 3 year old is a challenge that usually results in him banging his head on the concrete floor, blood curdling screams and flailing of his body.  He is a small boy with complex challenges including cognitive challenges, sensory processing disorder, autism, seizures, etc.  So what is a person to do?  Staying home is not an option as we have multiple children that "want a life" and our boy isn't going to learn skills to be able to cope if he doesn't practice.

Today's trip is to the aquarium but gone are the days of just jumping in the vehicle and going.  We chose the aquarium because the lighting is low and the atmosphere is generally calm.  If you think about it the aquarium is like a natural sensory room.  First step was to phone the aquarium and find out the quietest times for visiting.  This is essential for 2 reasons - firstly we want the least amount of stress/stimulation for our children and secondly if any do resort to their coping behavior we do not want to scar too many innocent people in the process.

We arrive at the aquarium well rested, as taking overtired children anywhere is not fun, especially children with complex needs.  Everyone eats a little snack, has a drink and either uses the toilet or has their diaper changed before we unload the vehicle.  2 wheelchairs and a couple strollers later we are ready for the aquarium.  We have our "sensory dulling bag" with us - this includes earplugs, sunglasses and wet wipes (in case anybody needs their hands cleaned).  All the kids with sensory issues have fleece sweaters with hoods in case it is windy getting into the desired location.

What a great time, there was only a couple other people at the aquarium while we were there and the staff were so helpful.  We had only one minor issue on the elevator that is set up like a submarine going into the depths of the ocean.  One child was scared of the sounds and shaking of the elevator cling tightly to Mom but was able to calm down quickly.  Some of the kids played a game learning how scientists do "eel grass studies" while others admired the fish.  Those that were interested created a "mosaic whale craft" and then we proceeded to the aquariums for touching the sea life.  Only those interested touched the sea life and then it was time for home.  This trip went amazingly well, we didn't traumatize anyone with our extreme behavior but we did manage to shock a few employees with the size of our family.

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Kids Learn to Fish

One of the many things that I love about the arrival of spring, is the many community events.  I regularly read the newspaper looking for events of interest and also try to locate events that may add to the children's schooling.  Yesterday we attended a "Kids Learn to Fish" event which is held annually in a neighboring community. We got up in the morning, I told the kids we would be going on an adventure and off we went. Normally I would have given them a lot of prep time and listed out exactly what we would be doing but as the weather didn't look the greatest I didn't want to get their hopes up if it didn't work out.   Out of the 9 children that attended with me only 2 had ever tried fishing so this was something different for most.

At this event they had many booths set up teaching a variety of skills.  They also had St John Ambulance their in case of an emergency, this was especially neat because 2 of my adult children where there as volunteers.  It is touching to me that events that my children attended years ago they are now volunteering at so others can have the same enjoyment they did.  

First we practiced casting with fishing rods - the fishing rods had small balls on the end of the line instead of hooks and they had a variety of targets that you could aim for as you practiced casting. We moved around to many booths learning a variety of skills - fish identifications, understanding fishing regulations, fly tying, knot tying etc.

 We then worked our way down to the lake where they had well stocked tanks of trout immersed into the lake off of the dock.  There were many volunteers that helped the children put their new fishing skills to work and they each had the opportunity to fish. By the time we got to fishing it had really started raining hard but 4 were still up to fishing.  Within about 10 minutes all 4 had caught their first fish.  The kids with sensory issues were  not eager to touch the fish, luckily they had a bucket for us.  They even gutted the fish before we brought them home.  

After completing all the events they had a kids "fish pond" where the kids won a variety of prizes.  One of our children won her own "fishing rod" which was very exciting.

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What's expected, creating expectations

When your child has special needs, especially sensory processing issues, it can be difficult for them to go out in public.  Trying to process the varying sensory inputs of new locations sometimes comes back as extreme behavioural issues. Over the years with our children we have needed to try different techniques to lessen the difficult behaviours, making getting out more manageable.

Help your loved one by letting them know what to expect.  By taking time to prepare for an event your child knows what to expect and has time to practice suitable behaviour.  Use calendars and visual schedules so your child can mentally prepare for what is coming up in their life.  At our home we have a calendar that lists all activities for the family, and a few of the children study it multiple times per day.  We then take "tomorrow's information" and record it on a whiteboard so it can be reviewed at dinner and then again a breakfast. Sometimes more reinforcement is required as transitions are still an issue so we use a hourly schedule with visuals.

For some activities more preparation is required, going to the dentist has been a big issue for a couple of our children.  To make challenging outings more manageable we will read stories about the activity, make up our own social stories or watch videos about the intended activity.  Do some role play or play a game that will help understand what the activity will be like and teach appropriate behavior that is expected. We also practice/discuss/role play what to do when feeling uncomfortable with the situation.  If it's too loud, teach them to cover their ears or provide the child with earplugs or earmuffs.  Too bright or busy, try sunglasses or a ball cap.  If the situation is too stressful, maybe biting something appropriate (not their sister), chewing gum, a fidget activity or weighted item will help.  Brainstorm what the trigger may be and what the child is feeling then look for simple solutions.

Look for the best time for participating in a chosen activity.  When is the best time of day for the child? When is the most desirable time for the activity?  Phone and ask when the quietest time is?  Ask if they have any options for people with special needs?  They may have preferred pricing for a support person, maybe a different place to line-up for someone who cannot wait.  I always phone and explain my child's needs and see if they have options to help them.  If your child fatigues easily bring a wheelchair, stroller or chair so you can provide needed breaks.  When possible bring an extra support person. If you have multiple children and one that may not be able to fully participate this will make the day more enjoyable.

If your child gets bored easily give them a job or activity to do so they have something concrete to focus on.  You could give them a map or list and have them responsible for a task.  Give them a camera and make them the designated photographer for the activity.  Sit with the child in the planning stages and brainstorm some things they would like to learn and have them find the answers at the activity.  I always bring small snacks and water as this can be a distraction to extend the time spent at the chosen activity.

Try to keep the activity positive so you can build on it.  If your child experiences short positive trips they will be more eager to try longer trips.  If they have difficulty with activities practice that activity in small increments.  We have gone to the grocery store to practice walking into the store and then built up to walking up and down the isles without grabbing things.  If your child has trouble with an activity do many short trial runs practicing expected behaviour and by scheduling it as practice time you will have more patience to teach expected behaviour.

Also remember it is okay not to take your child places, if it is too much for your child and its something you want to attend find a babysitter.  Leaving your child with a babysitter can be a nice break for both you and your child.

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Black and White thinking

Today our adult daughters felt it was time to continue the tradition of taking their younger teenage sister out to buy her first pair of "thong" underwear.  This "tradition" started about 6 years ago with our first daughter feeling her sisters underwear was not "cool enough".  This has now become a tradition with the girls of the family, when you are old enough your sisters take you to buy you new "cool" underwear.

After a day in town the girls come home after finding the perfect pair.  This may have been fine if the said teenager was not diagnosed with FASD.  Upon arriving home she feels it necessary to scare her older brothers by showing them her new "thong" and the best way for a modest girl to do this was to put the "thong" on over top of her jeans.  You would think that having seen so many "thongs" hanging out of many girls pants you would know how to wear one.  This was not the case and the "thong" is on backwards over the jeans, it must go this way because "the tag always goes in the back".  After an explanation of how to wear the underwear and a description of why the tag was put on the front (no room to sew a tag on that small piece of elastic at the back) she has it over top of her jeans in the correct direction and the scaring of her brothers ensues.

The next morning comes and it is time to wear the underwear for the first time.....just cannot get it through her head that the tag is in the front.....when you get dressed the tag always goes in the back.  It is time to remove the tag on the underwear as it should not be this complicated to put on your underwear on.

A lot of people struggle with having "black and white thinking"  meaning it is either black or white, right or wrong, the truth or a lie and there is no room for grey or a little white lie.  When you think of our society we have a lot of "grey areas" which makes it difficult for people with these challenges - people struggling with autism, FASD, etc.  For these individuals it's not always as easy as cutting out the tag in a pair of underwear to change the thinking.

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