Saturday, 28 June 2014

Who's on your team?

Complex children require the support of many professionals and as a parent it can seem like you are working on a never ending puzzle trying to figure out who does what and whom would be best to support the needs of your child.

For our family we started with our family doctor when building our team as he referred us to a pediatrician.  This pediatrician was a great doctor and worked okay at first but with constant issues with her staff not passing on messages or allowing appointments we soon determined this relationship wasn't in our children's best issue.  When looking for a replacement pediatrician we asked around in our community and with peers parenting children with similar challenges.  Having a pediatrician with excellent office staff makes it so much easier when trying to meet your child's needs.

Once set up with a pediatrician we were referred to other medical specialists depending on the nature of our child's conditions.  One thing that we have found very helpful is building a "team approach" with the medical professionals.  We ensure that all the medical doctors know who the children are seeing, what testing is being done and any findings they have regarding the child.  We also ask the medical specialist to copy one another on any letters, reports or testing.  Having the doctors working together is a tremendous support especially for complex children that they are still trying to completely diagnosis.

Therapist support is another challenge, when the children are young, if they have delays, early intervention will follow them.  Where we live this includes infant development (until 3 years), speech therapy, occupational therapy and physical therapy.  As the children get older (school age) the therapy can be provided by the province, school system or privately.  Parents quite often have to advocate strongly to get these supports for their child and search out methods to pay for these supports.

There are also other therapies available for example hippo (horse therapy), music therapy, aqua therapy, chiropractic therapy, massage therapy, vision therapy, applied behavioural analysis therapy, behavioural therapy, etc.  We discuss with our medical team the various forms of therapy we have each child participating in and what is being worked on.  We also provide copies of reports from the therapists to the medical team.  By providing the therapists findings this gives the medical doctors another view of the challenges your child is presenting which can aid in supporting your child.

To determine what may benefit your child you should have a discussion with your medical team.  Research what is available and the benefits of the various therapies.  Talk to the professionals offering the various therapies and see if what they offer meets your child's needs and your goals.  As the parent it is our job to support our child in the best way we can.  This may mean seeking support from various professionals to help along the way.

Friday, 27 June 2014

Should we really open up for Openness

I have been busy collecting photos and writing updates/letters about 7 of our children.  We have an openness agreement with their birth parents which we are required to spend photos and updates twice per year.  Our updates are sent to a third party and then forwarded to the birth parents as we were advised not to share our personal information with them.  Within the agreement the birth parents are also expected to send letters to the children which are shared at our discretion with the children, assuming the content is appropriate.  Unfortunately the birth parents have not fulfilled their obligation but this does not stop us from keeping up with our part.

We have a range of openness agreements with foster and birth families related to the children we have adopted.  Some, like the one I have been currently been working on, is very limited and non disclosing.  This type is ideal if there is a protection or boundary issue with the parties involved.  It is also beneficial in a situation where emotions are very high and the other party doesn't know if they can participate in an openness agreement.  This type of agreement doesn't have the pressure involved of having to meet face to face but it can be a great starting point that can expand if both parties are in agreement.

With other family members we have scheduled visits 2 times per year in a public location.  For these types of visits with young children we try and pick a location with a play area so the children have a place to burn off steam.  We also find it helpful to have a second support person at the visit.  This second person can be a sibling, friend or another adult.  This is beneficial when you don't want the child to be in a situation where they are one on one with the family member.  If they need to go to the bathroom for example they can go with the second person, this also gives us time to speak privately if needed with the family member.  In our family having multiple children that have been adopted it has been helpful for them to participate in their siblings openness visits.  The children are given the choice of inviting one sibling to the visit with them, the invited sibling is support to the child.  The invited sibling is able to gain a better understanding of what life was like for their sibling and this encourages communication about their past.  This also helps the children feel these visits are a normal part of life "not just for the adopted child".

With other family members we have completely open relationships where we invite them to our home or go to their homes.  With these family members they have adopted our whole family and we have adopted their whole family.  These relationships are like any other relationship our family has.

Some of our openness agreements are written "good will" contracts and others are verbal agreements.  We feel it is important for our kids to have an ongoing connection with their past.  For some of our children the connection with the birth family is very limited and the connection with the foster parents is stronger.  For some of the children the connection is with grandparents, aunts or uncles and others it's with birth parents.  Some relationships have developed over the years and others have waned but the kids have these connections that they can choose to continue when the become adults.  When you adopt there is a huge emphasis that you are the forever family and I agree that when you commit to adopt that it is forever but all the people that  have been in your child's life are also there forever and it is important to support that in a positive fashion.

Thursday, 26 June 2014

The day...week the plague hit

We have been attacked by the plague.  The flu is bad for everyone but if you have a large family with multiple people getting sick it is overwhelming and if your children have special needs it's even worse - if you are a large family with multiple special needs it's like you have been hit by a plague.

The last week around here has been non stop vomiting, diarrhea and fevers with 8 children sick at one time.  5 of the 8 children also have significant special needs which most people don't realize the severity when the flu is included in the mix.  For the 5 the flu triggered multiple seizures and when vomiting we had the increased risk of choking/aspiration as they all have swallowing disorders also.  The flu for a person with significant special needs also tends to hang on longer for them than your average person.

After recovering from the flu virus the children need to recover from the secondary effects of the flu.  The multiple seizures effect the children's abilities, for example the children with feeding and swallowing challenges have regressed in their abilities and are back to only being able to eat pureed foods.  Their motor skills have regressed including their speech abilities. The ones that aspirated  have pneumonia to recover from, it's a never ending cycle.

I encourage everyone to help prevent the spread of the flu 

*If you have the flu stay home while sick and 24 additional hours after you have been symptom free (without medication).

*Limit your contact with people so you aren't spreading your germs.

*Try to avoid close contact with sick people.

*Wash your hands with soap and water multiple times throughout the day - after using the toilet, whenever you wipe your nose, before preparing food, before eating, etc.

*When coughing or sneezing cover your mouth with a tissue or the inside of your arm.

*Avoid touching your eyes, nose or mouth.  Germs are often spread when a person touches something that is contaminated then touches their eyes, nose or mouth.

Friday, 20 June 2014

Something to say.....Augmentative Communications

5 of our children have varying degrees of apraxia, with one child that also goes mute when overwhelmed.  The severity of our children's apraxia is also complicated by their seizures, when they are having multiple seizure activity their speech tends to regress.  Our children's communication/speech needs are overseen by a team of registered speech therapists who work on articulation, augmentative communications and feeding.

What is childhood apraxia of speech?
Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. 

As the children's speech is not understood by most people, in fact sometimes we even have difficulty understanding them, we have needed to use various forms of communication.  All of our children with apraxia also have mild to moderate intellectual disabilities which impacts their abilities using augmentative communication.  

All of our children are taught basic sign language from the time that they are "placed" with us.  We use the signing time DVDs to teach sign language along with the older members of the family modelling basic "sign language" while verbally speaking.  The children have very sloppy signs because of their fine motor difficulties but paired with speech it does give you another clue as to what they are saying.  The draw back to sign language is that the person that you are communicating with also needs to know sign language.

All 5 of the children at a young age started using "Picture Exchange communication" this is a very basic, inexpensive source of communication.  The children are provided pictures of basic items that they may request.  They are taught to communicate by passing the picture to the person that they are speaking with.  As they progress they will have pictures to make a full sentence when requesting.  This system works well to start with when the child's vocabulary is limited but as they progress they need more and more words/pictures.

For one child we tried a Springboard lite talker.  The idea behind this was good but I found that it took a long time to program and then my son (even with the child locks on) was able to erase everything I spent hours programming in a matter of seconds.

We then moved onto Proloquo2go an app that is available on tablets and apple products.  This comes with different pre programmed options and is very easy to program.  You do need to have a charged device to use the program.  As it is on an electronic device you are limited by the environment that you are using it in.  We also had an issue with a couple of our children being so random in what they wanted to say that we didn't always have the words programmed.  

Our youngest son is currently using a tech speak to learn that he can push a button and "say" something.  We are using this with activities to encourage his communication.  He has various cards made up, so if we for example, are playing "Mr Potato head" we can push the button when requesting or speaking making it game like to start.  We also have cards for storybooks that we commonly read so that he can interact with us about the story.  As his abilities increase he will move on to a more complex communication program.

Most of the children are currently using the PODD system.  This system like all the others also has it's benefits and drawbacks.  With this system the children each have binders with their words.  As they learn they communication partner (mom, dad, teacher) is responsible for turning the pages.  The child touches the picture and the communication partner speaks the words.  This system is set up in a way that we speak forming complete sentences, for example they are not pushing a button or passing you a card that says something like "car" - with other programs you have to guess/determine what is meant - do they see a car, do they want to go for a ride in a car, do they want to play cars.  Also these pages can be printed on waterproof paper making them more durable.  One issue that we have is the children are functioning at different levels so their binders have different words resulting in 5 binders that should go with them where ever they go.  This also makes it that we as their communication partner have to determine what level we are speaking at.  As the children advance it is my understanding that we will also have the option of using this program on a tablet.

Giving our children a way of communicating is extremely important and also reduces frustrations that our children are feeling (frustrations that come out as negative behaviour).  There are many options available and it is a case of finding something that works for you and your child.  For us we use one system until it is no longer functioning well for us or until we find something that better meets our current needs, depending on the child's developmental level.  

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Wednesday, 18 June 2014

Annual Ceremonial Review

Our children that are members of the Royal Canadian Air Cadets had there Annual Ceremonial Review (ACR) this past weekend.  The ACR is a time each year that the cadets display what they have learnt in the past year and are recognized for their accomplishments with their family and friends present.  For our family this event is like a family reunion with grandparents and adult siblings (and families attending).  One son who is an air cadet officer (staff) in a different community arrived in uniform to help out which was greatly appreciated as our squadron recently had staff retire.

One of our daughters was the "squadron commander" (the highest position a cadet can obtain) which was even more meaningful as it was her final parade as an air cadet.  The cadets demonstrated their leadership, drill (marching), rifle target practice, model rocketry, and first aid skills.  For the first aid demonstration they had a younger sibling go sit on the parade square and start pretend crying with a possible broken leg.  This siblings acting skills were quite effective as I had people come up asking "how my daughter was", personally I thought it was obvious that it was a demonstration but apparently not.  Inside they had displays of survival weekends, glider flying days, volunteer activities they did as a group, etc.  Our eldest daughter was the master of ceremonies and much to her shock and horror, when the music sound system failed, was required to lead everyone in singing the "national anthem".  She did a lovely job however she is not a singer and being put on the spot to sing was a little bit horrifying for her.

All three of our children that are cadets were presented with an award which was a huge surprise.  Our daughter the "squadron commander" was presented with the "citizenship" award.  To win this award they look at all the cadets and consider what type of "citizen" they are in all aspects of their life not just at cadets.  What type of leaders are they?, what volunteer activities do they do outside of cadets, and what type of students are they?Another daughter won the award for "Top level 4" cadet which is presented to the highest achieving fourth year cadet and our son won the "Coral Wallace award" which is presented to the cadet that they believe has worked the hardest that year at overcoming diversity.  Our son has been diagnosed with FASD and ADHD which does present challenges for him in many areas of his life so it was nice that it was recognized how hard he works.  

Friday, 13 June 2014

Diploma in hand and homeward bound!!

Today is graduation day, our eldest daughter is graduating with a diploma as an occupational therapist/physical therapist assistant, with honors.  This diploma is a step towards her goal of becoming either an Occupational Therapist or a Physical Therapist.  Next year she will be moving over to the university to continue with her education.  It was a very nice ceremony with approximately 250 graduates from various programs.

The college has multiple ceremonies so they are able to be kept shorter for the students and guests.  Our daughter was able to make special seating arrangements prior to us arriving to accommodate the large number of us and our special needs.We were able to meet one of our daughters teachers whom had many nice things to say about our daughter, it is incredible when you hear positive feedback about your children (even if it is confirming what you know).

As we wanted the children to be able to sit through the convocation ceremony we had a much more relaxing day.  We asked the hotel if we could have a later check out time, which they were more than happy to do at no extra cost.  This enabled us to have breakfast, relax in our hotel room, go for another swim, then get ready for the graduation and repack the bus.

After the ceremony we encouraged our daughter to celebrate with her friends while we went for dinner.  We then fueled up and embarked on our long drive home.  Going back will be a fast non stop (except breaking for sleep for the driver) trip as 4 of the children have obligations Sunday morning.

We left at 6:30 pm and drove straight through the night (1300 km across 2 Provinces) only stopping for fuel and quick breaks to stretch.  The benefit of driving through the night was traffic was light, the temperatures were cooler and the kids slept for the most part.  We arrived at the ferry at 8:15 and were able to drive straight onto the 8:30 sailing, which in itself was amazing.  Once on the ferry we all got cleaned up (while on the bus) and then went upstairs for breakfast.  Once we arrived home Hubby had a well deserved sleep while the rest of us unpacked.

Thursday, 12 June 2014

Tornadoes, Friends and Gophers! Oh, and the odd dinosaur!!!

Last night brought major storms including tornado warnings to the neighboring communities.  The thunder, lightening and wind were incredible (what do you mean we might have to evacuate).  Where we live we rarely get thunder and lightening and never get tornadoes, I am sure the locals thought we were crazy as we were in awe over the weather.

Today's adventures were all about dinosaurs, first we went and saw the worlds largest dinosaur and many smaller dinosaur models.  Then we went to the Royal Tyrell Museum of Palaeontology.  This museum collects, preserves, researches and interprets all aspects of fossil heritage.

Outside of the museum there were many semi tame gophers running all over the place.  Not having gophers were we live and the fact that they are kind of cute, our children were very interested in them.  They spent quite a bit of time trying to catch them with the hopes of bringing one home (which was not an option).

Later in the afternoon we were then back on the road to our final destination, our daughters college, 1500 kilometers from home.  She had to be at the college early enough to get all the prep done for tomorrow's graduation.  Having done her last semester, her practicum in our hometown, she was very excited to see her college friends once again.

Wednesday, 11 June 2014

Sleeping Arrangements, stacked like cord wood!

Today was a more relaxed day on the road.  We got up and enjoyed another complimentary breakfast.  When choosing hotels on this trip we have been looking for ones with complimentary breakfasts and a swimming pool, traveling as a large group, meals get very expensive so staying at a hotel that offers a complimentary breakfast really helps.  As the complimentary breakfasts tend to be quite substantial, come lunch time we stop at a grocery store and pick up fruit, buns, cold cuts and cheese to make a quick, lighter, inexpensive lunch.  The pool is a bonus because it provides a way to release the extra energy the kids seem to have and makes it easier than continually telling them to quiet down in the hotel room.

Having a large family with multiple needs we have found hoteling easier for us if we bring playpens for the 2 youngest children and we also bring a couple of individual air matresses for the children that have difficulty sharing a bed.  The younger 4 children shared a queen sized bed sleeping width wise (like cord wood) instead of length wise, this will work while they are young but will change as they get bigger. When hoteling with a large family you frequently run into issues of how many people are allowed per room.  At a couple hotels they were okay with 7 per room as 1 (in each room) was in a playpen.  One hotel we had an apartment suite that we all stayed in and another hotel had rooms for 8 people.  When determining what arrangement works best ask the hotel staff what room configurations they have for large groups, for us the apartment suite was the least expensive.  Also when the hotel staff quote you a price, ask if this is their best price.  We found that the pricing varied from what was quoted to the "best" price.

After breakfast and packing up for the day we were off to the "zoo".  This was a very large zoo that we spent many hours touring in the nice warm weather.  Some of the displays were outside and others had indoor housing for the animals.  They had a hippo display with a large glassed in pool, that you could view the hippos while they walked on the bottom of the pool.  A couple children were disappointed as the elephants had recently been relocated.  For most of us the penguin display was the favorite and the added bonus was it was in an air conditioned building.

We then got back on the bus and the exhausted children napped while we drove a couple more hours to our next destination.  Arriving at supper time we stopped for dinner and checked into tonight's accommodations early enough for an evening swim.

Tuesday, 10 June 2014

What's for dinner....roadkill!

After a relaxing nights sleep we were up and ready for our adventure.  The hotel offered a free breakfast which is a huge savings when travelling with 14 people.  Breakfast was buffet style ranging from toast or cereal to eggs, ham and waffles.  Everyone filled up with the idea that lunch would be a lighter meal.

We then went to visit a "train museum"  which was a huge hit.  While learning all about the history of the Canadian railway we were able to climb in and out of various train cars.  A retired train engineer was on hand and told us all about the steam train and tales of his life as an engineer.  It turned out that the steam train on display was one that he had worked on many years ago.  They also had a train car set up as a play area for the younger children.

After the train museum we went to a "hydro dam" to learn how our electricity is made.  One daughter thought it was going to be a beaver dam and had hopes of catching one, so she was disappointed to learn that was not the case.  Being a large group they offered us a free tour, our tour guide was very informative and patient with our multiple special needs.  Our 5 year old that rarely speaks to anyone had many questions, the 19 year old started crying for no apparent reason, one child had a seizure and the 2 and 3 year olds - well they are 2 and 3.  At the end of the tour they had an area that the kids were able to interact and produce electricity which engaged the kids that struggled with the tour.

We then loaded back up on the bus for nap time and continued driving, while being questioned "is that the north mountain", "how does Elsa get up there" and "can you see her castle?" by our "Frozen" obsessed daughter.  The one benefit of our daughter being on the look out for Elsa is that we can watch other movies, not just "Frozen"

After a few more hours of travelling we stopped at a favorite restaurant of my husbands from his younger days.  The best way to describe this restaurant is to say it has a lot of character.  You felt like you are stepping back in time when walking into this old authentic Mexican restaurant.  The restaurant was decorated in a very rustic fashion, old riding tack on the walls, old signs on the wall, animal skulls and pelts throughout, the light fixtures were upside down buckets and old jars.  The floor and walls were old worn wood, people where given peanuts in shells to snack on and were encouraged to drop the shells on the floor.  The furniture was a mishmash of chairs, stools, an old bar and tables.  The beverages were served in jars, the appetizers served on a wooden tray (which our daughter described as a hollowed out log).  Being authentic Mexican food some of it was not recognizable to a few of the children and already questioning their surroundings, nervously said that they didn't know what they were eating. Taking full advantage of this situation I said it was "road kill" after all that's how they get all the skulls and animal pelts.  Horrified at first but knowing I was teasing them they were able to relax and enjoy themselves, with a full description of dinner.  Dinner was delicious and then we were off to the hotel for the evening.  

Monday, 9 June 2014

What are you thinking?

We are on a road trip with 12 of our children.  While preparing for this trip we have had many comments from friends and family, along the lines of "are you crazy", "what are you thinking" or "better you than me". Yes we may be crazy but with our oldest daughter graduating college in a community 1500 kilometers away we felt the most feasible way of us all attending is a road trip and if you are going to drive that far you might as well make a vacation out of it.

The week has been spent preparing the family bus - we just had the transmission replaced as it failed just before our planned trip, we are so relieved and thankful it blew before our big adventure.  One of our adult sons gained the ranking of "favorite" big brother and installed a television on our bus for the trip.  While at home, television time is extremely limited so watching while driving is even more exciting.  Many of the children think this means that we can watch "Frozen" non stop on our adventure.  How many times can you watch "Frozen" in a 3000 kilometer round trip?

Packing was an exhausting and never ending process, I was thinking how appealing the idea of becoming nudists would be.  If we didn't have to pack clothing and only required sunscreen that would be easier.  The nudist idea wasn't well received with any of the kids, so packing it was.  14 people with 1 weeks worth of clothing each quickly added up.  2 wheelchairs and 1 twin stroller, play pens, air matresses, diapers, medications, oxygen therapy equipment, first aid supplies, meal supplements, school work and we are packed and ready.

We were up at 3 am and out of the house by 4 am.  The younger kids although they have been telling everyone they see, for the last few weeks that they are going away, have been asking non stop "where are we going?"

The first day of our trip has been mostly driving.  We drove 2 hours, then caught a ferry off of the island, and then continued driving most of the day.  Along the drive our "Frozen" obsessed daughter continually asked, every time she saw a snow covered mountain, if that was the "north" mountain and if "Elsa" was there.  We made a couple quick stops and received many stares and the usual comments "are you a daycare?" or "a birthday party?" etc.  A couple of the teenagers have been brainstorming ways to get people not to stare and have been making bizarre faces thinking people won't look at them.

We finally arrived at a hotel for the evening and divided ourselves between two rooms.  Dad who did not get to nap along the drive, then had a nap, while the rest of us invaded the heated outdoor swimming pool.

Saturday, 7 June 2014

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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Monday, 2 June 2014

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.