Secret shopper, the hospital version

If there was ever a job similar to a "secret shopper" but for people spending time at hospitals I think that it might be up my alley.  In the last week I have spent substantial time at 3 different hospitals in 3 different cities.  Fortunately most of our time spent at the hospitals was for scheduled appointments and not a health emergency.  Our more complex sibling group have never ending medical appointments and it seems that every time they see a medical professional at least one of them is referred to another doctor, for another procedure or is given a new diagnosis.  I really had thought this would have slowed down by now as they have been "home" now for 8 years, however it seems that the more we know the less we know.

We are constantly working too provide some sense of a normal childhood into our kids lives, which for us means really focusing on taking time to play between all of the appointments and procedures.  One of our recent hospital visits was over 3 days so we decided to make it into a mini vacation.  We booked 2 hotel suites too accommodate the 12 of us, prepared some meals in advance that we could throw into the crockpot we packed with us and headed off for some fun.  When one child had an appointment we took turns supporting them while the rest of the family swam in the hotel pool or went to a local playground.  After the appointments one day we visted Science World, another day we visted the local Aquarium and each day we spent many hours in the hotel pool, which we had to ourself each time, to the delight of the children.  Having all this fun planned also helped ease the anxiety for the child with the appointments as it gave them something else too focus on.

Our drive too provide some normalcy in the children's life has been reinforced after speaking to a few people who grew up requiring many medical appointments/treatments.  My father in particular tells stories of the adventures him and my grandmother would have when they needed to travel to the "city" for his hospital visits.  I hope my children can tell similar tales, with fond memories, to their children when they are older.

If you have a child that requires multiple appointments and hospital visits what do you do too provide a sense of normalcy?

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?

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?

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?

Together, We Make a Family!

Over the last week we have had a visitor staying with us - the former foster mom of 3 of our kids.  For these 3 kids she was/is their family, they were apprehended at birth and never had a relationship with their birth family.  The children lived with her for 2-4 years depending on their age at placement, she was their Mom.  Now referred to as "Gramma" she also has been a great friend and resource, especially when working towards a diagnosis for their many challenges as she was there for all the milestones.  For us openness in adoption varies depending on whom the important relationships for the children are with.

With our many adoptions we have formed varying relationships with members of the children's birth families and foster families.  Some of these relationships have been great from day one and others have taken a great deal of work.  Some have been completely open relationships where we have the people to our home or visit their home, some we visit in a neutral location with them not knowing where we live and others involve letters and photos being mailed through a 3rd party.

Openness can be extremely difficult as you are trying to have a forced relationship with a person you might not particularly like or be drawn too.  It may be a person that has hurt your child greatly or wasn't there for your child.  I recall meeting the birth mom to our first adoptive children and I was terrified, I had lived a very sheltered life and she was extremely rough.  For another adoption when meeting that particular birth mom she was so nervous and scared she was physically ill.  Yet another relationship, that was strongly encouraged by the social workers, turned out to be continuing the abuse that they were originally apprehended from.  We have also had our child speak highly of someone from their past and we have searched out that person and formed a relationship.

Over the years, with many experiences both good and bad, I can honestly say that openness in general has been a good thing for my children and myself.  The way we responded when negative things happened proved our commitment and love to our children, ideally the negative things wouldn't have happened.  The relationships that grew over the years have added to our family.  Being around various members of their birth families has strengthened the children's understanding of where they came from and why being placed for adoption was their path.  Time and circumstance has also changed the relationships when kids are young, the relationship tends to be what the adults make of it but as the kids become adults they have taken the lead on what they want the relationship to look like.

The messy wonderful life of adoption

A friend recently posted this article and I think it speaks of the realities and ongoing costs of special needs adoption, especially but not limited to FASD, RAD, ODD, etc., that aren't always spoken of.

"We've had the house we dreamed of with the white picket fence.  We've had the kids we imagined and some we didn't.  We've lived and loved more than most.  The past few years have brought us unimaginable pain but in even greater volume, love and blessings that we appreciate all the more for all our losses.  We are embarking on yet another stage of our lives and we know not yet where it leads.  Middle aged (OK, at 56 that  means we plan to live until 112), we no longer own a home.  Renting is not a problem but the instability of it is especially hard on our younger kids.  We also see ourselves continuing to host back at least one of our adult kids with disabilities (as we do now) at any given time.  So we are looking to have more reliable housing (about to have to move a second time in a year).  If you are the praying kind, keep us in mind as we figure out where the path less traveled will lead us next.  We've kind of lived our lives like this line from a Trooper song "Don't let fear and good judgement hold you back".  I think that's what got us into this messy, wonderful life in the first place so we'll try not to let common sense interfere with our next move.  

One thing that is often overlooked is that the child's issues could be so extreme (behavior or health) that 1 or more parents are required at home to manage the child.  Over the years raising our children we have had times were both my husband and I worked outside of the home and other times that one or both of us have needed to be home.  During the time that we both needed to be home we still had to pay our bills so this would come out of our savings or line of credit.  Having to stop working to focus on raising children with extreme issues seriously effects your career and retirement savings over the years.  Leaving your job for a few years or more and then trying to re-establish yourself at an older age can be near impossible.  For example at one time my husband was a career firefighter but leaving that profession and then trying to get back into it in your late 40's to early 50's is near impossible when you are competing with 20 year old's.  

Many starting out with adoption have a family home and are adopting to add to or start their family, it may be the proverbial house with the white picket fence or something more modern.  Your child may arrive with behaviors that you expect will be outgrown quickly but over time the child grows, their behaviors/strength increase and your home begins getting more damaged.  In anger, walls are punched and kicked and things are thrown, windows broken, doors ripped off the hinges, the wear and tear on the house is hard to keep up with.  Maybe your child has issues with toileting and does this wherever they please or they enjoy smearing it.  Your child may also be a hoarder which quite often involves hiding food and other things that rot and smell.  Over the years we have had children that rage, had issues with toileting, are generally klutzy, wheelchairs/walkers that can damage the walls while the occupant is learning to use it, etc.  all which can take its toll on the house.  Your once beautiful home now looks like it belongs in the slums.  

Having adopted kids with special behavioral needs there can be issues with safety and security over the years.  I know of families that have had to pack up and move their families because of safety issues either from birth families or the child's behaviors as they became teens or young adults.  

All these issues can compile and you find yourself not able to afford the home you started out with and your financial future can be looking pretty bleak.  There isn't assistance available to look after the child that you so willingly adopted years ago it is up to you and your family to make things work.  Mental health supports for youth are extremely limited and you might just have to ride the wave making things work anyway you know how.  

So, I really understand when my friend says she has a "messy, wonderful life".  If we had known what we were going to go through over the years I don't know if we would have jumped into adoption like we did, but looking back would we change a thing......probably not. Oh, and yes all of us in the adoption community need your prayers.  

Puppy training as a method of raising children?

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

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

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

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

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

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

Re-homing, hmmm

Recently in the news I have been reading how a US senate subcommittee will hear how the federal government can stop parents from transferring custody of their adopted children to strangers met on the internet.  This hearing is a response from a Reuters investigation into "private re-homing" were desperate parents are soliciting new families for their children.  article here

In the original Reuters investigation it tells of struggling parents, who felt they could no longer parent their child and resorted to the internet searching for anyone willing to take on raising their child.  In most cases these children had been originally adopted from overseas, however their were some adopted locally and some birth children.

I am a member of a few adoption and special needs related groups and this topic has been a very hot discussion.  Some people are appalled and ready to attack the parents who would consider taking this kind of action.  Others feel compassion for the parents/families realizing the limited supports available to struggling families.  All are concerned for the child's safety.  Some are blaming the adoption agency for lack of preparation and post adoption support.  Some are blaming the government for lack of timely support, if any support.  The opinions vary depending on where the adoption or parenting journey has taken each individual.

The part I struggle with, is the original investigation only focused on the most negative extreme cases, and yes something must be done to prevent any child from having to endure the abuses these children went through.  Not all "re homing" results in abuse and negative extremes in fact it can be a very positive result for all involved.  If there is an adoption break down and the child is placed into foster care is that not the child getting a "new home".  In any situation, birth families, adoptive families, foster families and re homing situations, there are exceptional families, horrid families and many in between.

I do not feel that having a "law" in place to restrict "re homing" is enough to protect children.  The families that went to these extremes (as discussed in the article) in placing their child felt that they had no other option, so if we take away this option, what is left? Families need support in order to raise and protect the children they have been blessed to care for and as a society we all need to step up and support one another.  We need education and support groups, both pre and post adoption, so that we are ensuring that people have the knowledge of what they are taking on.  We need easily accessible support and education for the parents parenting children with special needs. We need professional support that is available both in a timely fashion and easily accessible when the challenging behaviour begins, for both the child and the family.  We need non judgmental support when a person makes the very hard decision that they just can't do it and that their child deserves better.

I encourage each and everyone to reach out and be that person too offer support to struggling families. Help these families get the support they need so they are able to parent their child.  Be the voice advocating for support for your friends and families that are struggling.   If you know of someone that feels they must give up their child help them to find the safest, best possible situation for the child.  If you are the person struggling reach out and ask for help, sometimes it is as simple as asking.