Sunday, 2 August 2015

Are you speaking a different language?

Have you ever been somewhere that everyone speaks a different language?  What if you could speak the language but you didn't know what you were saying?  What if you said things that got you into trouble?  How could you get yourself out of trouble if you didn't know what you said?

This is a common problem for people with "social skill challenges" and for one of my daughters it is a huge issue.  My daughter is an extremely attractive, charming, naive young lady who does not present, on the surface like she has any special needs, yet the special needs she does have are getting her into serious trouble.

When hanging out with friends, in groups with peers, watching tv or movies people say things and everybody laughs.  This is one way we learn what kind of reaction we will get when we say something, and then we typically judge whether or not it's something to be said in other situations.  People also use slang phrases or idioms that can mean something completely different than what is being said.  For a lot of people with social challenges they take things very literal and may not understand what is being implied in many circumstances.  My daughter will hear a phrase or joke and then repeat it in another situation because when she originally heard it said everyone laughed, so it must be funny.  Too many times she will say something, in a family situation and we will need to take her into another room and tell her what she just said acutally means.  In the family situation she is fortunate because we know her challenges and try to help her through these social blunders.  In public, at school, at work or with peers people frequently don't realize that she doesn't understand what she says or hears and then they have differing views of her.

Most recently one of her olders sisters had to try and clear up a huge misunderstanding from something that was said.  An adult gentleman from an organization our girls are involved in approached our adult daughter, obviously feeling very uneasing saying he needed to speak with her regarding something said by the younger daughter.  This man felt our daughter had offered him sexual favours, in front of the entire class (which was a relief, keeping both parties safe but also extremely embarrassing for both) our daughter (after discussion) felt she had told a joke, ONLY A JOKE.  We used this situation to educate the gentleman about her special needs and I am hoping others can learn that just because someone says something doesn't mean they know what they are saying.

Our daughter has been working on social skills her entire life and we will continue educating her while trying to keep her safe.  Unfortuanetly with social skill challenges there isn't a list of, learn a,b and c and you will be fine.  Social situations are ever changing and never ending which presents more opportunities for social blunders.

Tuesday, 28 July 2015

It is finally up and running!

The swimming pool is finally up and full of water, it has seemed like a never ending process since taking the pool down last year for our house renovations.  When we took the 20 year old above ground pool down last year we noticed rust at the bottom of the pool preventing it from being reinstalled.  Having had a pool for the last 20 years has been a huge benefit to our family so we decided to replace it.  We were fortunate enough to find a new pool on clearance at the end of last summer that was much larger than the previous pool.  The new pool being much larger wouldn't fit in the same location which meant moving our playground and all the pea gravel and prepping the ground for the pool.  Thankfully one of our sons took it upon himself to move the entire dump truck load of sand and prep the area for the pool.  Setting up the pool did not go quite as planned, my husband has set up a few round pools and felt the oval pool would be similar, IT'S NOT!! The first go around setting up the pool, at a critical part of the installation my husband was attacked by horseflies, in which part of his reaction was letting go of the pool walls and them falling.  The second go around things just wouldn't line up and the third go around the walls were up.  Following the directions for installing the pool liner resulted in the pool collapsing when we had water delivered.  After googling liner installation it was determined the liner was to be installed a different way than described in the instructions.  Not being able to get the liner tight enough and the mounting frustrations we decided to call in a "pool guy".  For starters when you hire a "pool guy" they don't look like any pool guy you ever see on tv.  Secondly although they did a wonderful job of getting our pool ready for water we feel they ripped us off terribly.  They insisted on us paying cash, charging us $200 plus dollars per hour the only fortunate part is that it's up and the frustrations felt by everyone involved are resolved.

The pool has been providing wonderful therapy benefits for the children.  The number one relief is the 7 kids with seizure disorders are able to cool down during the current heat wave limiting their seizures and we are able to closely monitor them while in the pool when it's just us.  Going to the beach or a public pool with 7 kids experiencing seizures and 1 adult just isn't viable.  One of our children with autism has been so engaged when in the pool, interacting and giving excellent eye contact that we have been working on her therapy homework/goals while in the pool and getting tremendous results.  The children with mobility issues have been experiencing great freedom and mobility in the water.  We have multiple balls and toys in the pool encouraging the children to reach for toys, kick or toss balls etc to build strength, enhance body awareness and increase their gross motor skills.    I have read that water provides 30x more pressure on the body than air and we have noticed that it has a huge regulating benefits to our children with sensory issues.

Sunday, 26 July 2015

Gotcha Day

This week we will be celebrating the anniversary of 3 of our adoptions, our "Gotcha days" the day we became family.  It just so happens that this week seems to be the favoured week for adoption placements in our home.

Our first anniversary this week is from our first adoption and we are celebrating being a family for 14 years.  These 2 adults are now 20 and 26 and doing a lot of reflecting and questioning what their life would be like if they hadn't been adopted.  Both children gave us "thank you" cards, to our surprise, thanking us for everyting we have done for them.  It was extremely sweet and humbling that they would do this.  We are the lucky ones having the opportunity to raise them into their adult years.  When these 2 were placed with us the professionals that worked with them stated that they would never progress, that they would never have a thought of their own, they would only parrot words, that their challenges were so extreme they had maxed out on their abilities.  Anyone considering adoption I encourage you to listen to the professionals but don't take their word as the gospel.  These two have become so much more than what was expected.  The oldest lives semi independently, works part time, graduated high school, has an amazing sense of humour, is so loving, caring and protective.  In fact sometimes it feels like I have personal body guards between my 26 and 19 year old sons.  The 20 year old has also grown into a beautiful individual, she is extremely social, loves attending her day programs and S
pecial Olympics, and is very helpful around the home.  Both still have their challenges but are so much more than the children that were proposed to us.

Our second anniversary this week was for 4 children from our sibling group of 7, and we are celebrating them being family for 6 years.  These children arrived at 1,3,4 and 5 years of age and all were functioning extremely delayed.  When they arrived many of our friends thought we were nuts (that's still to be determined) because it was like we had added 3 infants and a toddler to our family of 13.  It has been a non stop ride with these children and the progress they have made is wonderful to observe.

Our third adoption anniversary this week we are celebrating 11 years for our 16 and 19 year old.  These 2 were quite the characters when we ment them, in fact both had been banned from the social workers office because of their extreme behaviours which gives both of them a good laugh now.  They are both working towards high school graduation and looking like this is a viable option (one taking a little longer than the other), in their various activities they are frequently recognized for their citizenship, hard work and effort and at home they are a joy to be around.

For all these anniversaries we didn't do anything special.  We do use the anniversary as a discussion starting point making sure the kids, especially the younger ones, remember their story and how we became a family.  This story is discussed year round but the anniversary is a good reinforcer.  Do you celebrat your adoption anniversary?  What do you do?

Thursday, 23 July 2015

Perfect day for an openness visit

Yesterday was the perfect day at the park with the former foster parents and social worker of 3 of our children.  We are back on the mainland for more testing at the hospital which brought us closer to the foster parents and social worker so we all met at a local park for an afternoon visit.  It had been a while since we have been able to get together in person, but have had ongoing telephone and email contact, so they were all very surprised at the changes in the children.  The youngest 2 were placed at 1 and 2 years old and neither were walking or talking and their sister was 4 years old.  The social worker has only seen pictures in the last 3 years and the foster parents see them about once per year.  All 3 kids were very busy at the park playing with their siblings and the children the foster parents brought along.  Nobody could believe how big the kids have gotten and didn't recognize 2 out of the 3 of them.

I think openness is so important for kids and families that have been effected by adoption but sometimes finding appropriate individuals for relationships can be a challenge.  For these particular kids they have never had a relationship with their birth parents and that currently isn't a viable relationship, so it's important that they continue their relationship with their foster parents.  We feel by keeping these relationships it gives them a connection to their past, that has made them who they are today.  These relationships will be continued so as they age they will have a connection to their past and people to answer any questions they may have.  We also try and cultivate new appropriate relationships with birth family or extended birth family so the kids can know as much about themselves as possible.  With our various children we have all different types of openness relationships.  Some are fully open relationships, others are more discrete relationships, for a couple we set up a private email address just for them to contact us (with no personal information) and others our contact is in the form of letters and pictures through a third party.  Some of our openness arrangements are written agreements and others are just friendly arrangements.  We have relationships with birth parents, grand parents, aunts, uncles, siblings, foster parents, foster parents family and social workers depending on what works for the various situations.

Having children, that have now grown to adults, with similar openness arrangements I can honestly say that most have grown up with a strong sense of themselves and don't feel like anything is missing.  Do you have openness arrangements with your childrens birth family?  How do they work for your family?

Sunday, 12 July 2015

Shortest camping trip on record

The first camping trip of the season always seems to take the longest when it comes to packing.  All the bedding that's been sitting over the winter needs washing, the spring cleaning of the trailer and the endless packing for 17 plus people and a couple of dogs is never ending.  Once packed the bedding and clothing stays in the trailer for the season only coming out for washing and directly returned for the next trip, which makes it so much easier for subsequent trips.  For food we have the kitchen stocked with the basics and we cycle through the same menu each camping trip which makes for less planning and prep work as I know the trailer has everything needed to prepare the meals.

We often camp up the island about 3 hours away, near where our son and his family live and one of our daughters is working for the summer which makes it easier for them to join us.  Fortunately provincial camping is no charge for families with disabled individuals so an activity that can be expensive is accessible to us.  Also the campground that we frequent has accessible washrooms and showers which is a huge benefit.

Our first camping trip of the season also became the shortest camping trip on record for us.  We arrived around 7pm as one thing after another seemed to slow us down preparing for this trip.  Our son and his family, and daughter met us there and we got set up.  The younger children and our granddaughter had fun playing soccer, which really means all 8 each had a ball and they were kicking them everywhere which was like a game of dodgeball for all the adults, while setting up camp.  After the younger crowd went to bed we sat around our "propane" camp fire, no real fires due to extreme drought conditions causing a burning ban.  At about 11 the clouds decided to taunt us and suddenly let go, raining down on us for a couple minutes.  Enough time for us to decide its bedtime and get the chairs put away.  Over the night we didn't have any rain until just before we got up and then we had torrential downpours.  We decided that camping in the rain wasn't going to work and packed up before breakfast.  Years ago when we had a different crowd we would tough it out in the rain sitting under tarps playing cards but that wouldn't work with this crowd.

The fortune part of this extremely short camping trip is after everthing is dried out we will be ready for the next trip and with the rain maybe next time we will be allowed a real campfire.

Thursday, 9 July 2015

Challenges when raising someone with FASD

Recently my adult children and I were asked a few questions for a university research project on Fetal Alcohol Spectrum Disorder (FASD) which really got me thinking about how much we have learned over the years.  When my husband and I decided to adopt and we were checking off boxes for what risk factors we were willing to accept we spent hours researching the various potential risks.  I remember reading a lot about FASD and although we learned a lot it didn't really give us a clear idea of what life would be like.  With any diagnosis that's a spectrum it's difficult to truly determine what life will be like for each individual.

I thought I would share some of our responses and hope any of you readers might also share any responses you may have in order to help others considering adoption of someone with FASD.

What are some of the challenges for a family adopting a child with FASD?

I think a huge challenge is the lack of support these children receive throughout their lives from society.  The education system where we live does not fund people with just a FASD diagnosis there needs to be a secondary diagnosis also.  We have adopted 13 children with FASD and all of them have challenges with their learning.  Some have very low IQs, others with low average IQs and a couple with high IQs and all have challenges understanding what is being asked of them and need ongoing support to be successful.  In fact the ones with the highest IQs probably have needed the most support throughout their schooling.

As these children grow another challenge is, frequently they can not be left alone and may still need a "babysitter/daycare" when the parents are out even as teens/adults.  This can be a huge expense and inconvenience for families that many don't think of when adopting that cute toddler.  Different agencies that provide funding for respite frequently don't provide support for individuals with FASD.  Also finding someone to care for your adult child can be extremely difficult because the reasons they cannot be left can be overwhelming to many individuals.  Our 25 year old and 16 year old can be left alone individually for short periods of time, however our 19 and 20 year olds cannot be left and need constant supervision (which can't come from the 25 and 16 year old).

Getting support from medical, mental health and legal systems can also be a challenge.  When and if your child's behaviour gets extreme it can be difficult if not impossible accessing support because the different systems don't really have much to offer, so they give you the run around saying this is a problem for ____ but none have any real options.  If it gets to the unfortunate situation that the child can't live in the home due to extreme behaviours there are also limited options and frequently these adult individuals land up incarcinated or living on the street.

As adults they continue to need support becasue many aren't able to hold down full time employment or live independently.  Some qualify for supports for disabled adults and some don't but the need is still present for many.

There are also the many challenges that each individual family lives with however I feel some of these challenges would be alieviated if the support form society was present.  There is also the moral support that each individual going through these situations needs.  When you adopt and are then going through these challenges you are frequently limited by who you can confinde in - many people won't or can't believe what you are going through. You also have people that say "you adopted them what did you expect?" or they tell you to "give them back".  Sometimes when life is hard you just need someone too listen.

The children were also asked, what are some of the challenges they face living with FASD? (These are answers from some of our children)
Making good choices.  Understanding why something is wrong.  How people expect me to feel/act when I do something wrong.  I am gullible which gets me into trouble with some people. School is my biggest challenge it takes me so long to learn everything and then I forget so much.  Bullying.  Trouble speaking so others understand me.  Anxiety attacks.  Depression.  Not being able to do things that my friends can, all my friends passing me. Getting overwhelmed and having to cut back my activities if I do too much, even though it isn't much compared to my friends/siblings.  Learning is so hard.  Life is hard.

What type of challenges do you experience raising a child with FASD?

Saturday, 27 June 2015

Hospital visit anxiety

This week brought us to Children's hospital for more testing, with half of our complex sibling group (the other half have their turn next month).  Having a large siblilng group with multiple challenges has presented quite the puzzle for the medical team working with our family.  It seems whenever we visit a doctor, which seems like always, we leave there with more questions and upcoming appointments than we started with.  The added challenge the doctors face is that the the kids are adopted making it difficult to get birth family information which would be extremely helpful with such a complex mix of medical needs.

For us too get to Children's hospital it takes 6 or more hours depending on how long the wait is for the ferry.  We usually leave the day before our appointments and return the day following our appointments and add some fun into our time away.  Our son has extreme anxiety and was terrified about the idea of going to the hospital yet again.  We are fortunate that so far none of the testing has been invasive however in the past we did have one traumatic day when they were trying to do blood work on all 7 young screaming children and couldn't get veins in any of them which resulted in them giving up and having to try a different day.  This event has scarred our extremely anxious son and no amount of preparation seems to relieve his fears.  We tried social stories, talking about what was going to happen on our visit, talking about why he was scared, we tried focusing on more enjoyable activities while away however nonething seemed to help him even combined with his on going anxiety medication.  Do you have any tips on reducing a child's anxiety?

While on the ferry we listened to presentations by the Naturalists they had on board which was a nice diversion for the kids.  The presentation went well with our planned afternoon activity of visiting the "aquarium".  The last few visits to the aquarium it has been extremely busy but this time was great as the crowds were small.  The kids loved the dolphin show and we were fortunate that the staff recognized the fact that a couple of the kids were in wheelchairs and provided us with exceptional seats.  One daughter was truly amazed and squealed with joy every time the dolpin jumped.  From the aquarium we set off to our hotel and spent the evening in the swimming pool.  This long day with different activites was very beneficial in keeping the kids awake as they needed to be sleep deprived for their testing at the hospital and were only allowed 5 hours of sleep.

At the hospital 3 had sedated sleep EEG's and the good news is 2 actually showed seizure activity.  The kids have seizures regularly and every time they have had an EEG nothing has shown even though doctors have witnessed them having seizures, so seeing the activity on the EEG is apparently a good thing.  Our 5 year old had a lot of difficutly waking up from the sedation and could not sit or stand unassisted until the next morning.  We then met with the neurology and genetics doctors were they decided more testing is in order.....looks like MRI's, spinal taps and cardiology are int the childrens future.