Summer Plans

It’s that time of year again, the end of the school year.  Anticipation is high in our house right now.  The counting down of the school days, the declaring of how they plan to spend their summer and the joy of being able to wear shorts.  It is the best of times (for the kids) and the worst of times (for the mom).  I have always dreaded this time of year because Jackson hates summers so much.  That kid loves school and not being able to go to school has historically made our summers fairly miserable.  I think this summer is going to be better though (fingers crossed).  Having Daniel and Sylvia around will hopefully keep Jackson occupied and happy.  Of course our two week trip to Florida and the beach (Jackson’s favorite place) also helps.  But planning a summer with three kids has been, how shall I say, thorny, complex, intricate. 

Having a special needs kid who has a lot of therapies and doctor appointments is difficult to manage sometimes.  Now add in two other kids who have counseling, behavior therapy, summer camps, day care and doctor appointments and all of the sudden the summer turns into a logistical nightmare.  I have spent every day of the last week staring at the calendar trying to figure out how to get it all to work.  After 5 days and numerous post it notes I think I may have figured it out, somewhat.  So much for a laid back, hanging out kind of summer. 

The kids have never done summer camps before and they are so excited.  I let them each pick two camps and them being able to decide on their own was a big deal for them.  It is something they get to have some control over which I know means a lot to them.  This summer Jackson is going to his first ever summer camp.  Spokane has an amazing Parks and Recreation department that has an even more amazing therapeutic recreation program for people with disabilities.  Every summer they have a Funshine Day Camp that will accommodate children with special needs.  I am so thankful and excited that Jackson is going to get to do something like that.  It’s going to be a great experience for him.  Sylvia and Daniel both picked Camo Camp.  A week of building forts, tying knots, and archery.  Then Sylvia picked a Science camp and Daniel picked Mini Hawk Camp (baseball, soccer and basketball).  Should be a fun summer for everyone.

I may be spending the summer in my car driving children around but it will be a summer I know they won’t forget and that makes it worth it.  Besides “Children think not of what is past, nor what is to come, but enjoy the present time, which few of us do.”
-Jean de La Bruyère

Acceptance

When we began spending time with Sylvia and Daniel I was concerned about how they would react to Jackson.  I just didn’t think I could bring new children into our home who didn’t adore Jackson and see him for who he really is, instead of his diagnosis.  The truth is this really weighed heavily on me.  I’ve always wanted Jackson to have siblings.  I wanted him to have kids around to play with and learn from, kids who would help him and stick up for him when needed, a buddy he can have memories with.  But the kids didn’t initially warm up to him, and that worried me.  They would just kind of look at him with the “what is wrong with him” face.  They would ask questions about him but didn’t seem too interested in hanging out with him or interacting with him.  I knew it would take time for them to warm up to Jackson but it wasn’t going as I had hoped.  Then the kids moved in and they were still pretty slow to warm up.  Then something wonderful happened. 

Right after we started visiting the kids I signed up to do a Guild School school presentation at their elementary school.  I thought it would be fun for them to see Jackson and I up in front of their whole school talking about him.  Jackson went to the Guild School from the time we got his diagnosis until he was 3.  The Guild School is an amazing place and has helped so many local kids who have special needs.  Every year they have a Penny Drive and we go to local elementary schools and talk about how the Guild School helped Jackson when he was a baby, through physical, occupational, and speech therapy.  The students then bring in change to put in milk jugs to raise money for the Guild School.  It brings in a lot of money for the Guild School every year and ensures that no child is turned away if their parents are unable to pay for the therapies they need.  I love doing these presentations and talking about Jackson and Jackson loves them too.  He loves the sound of clapping and we get a lot of clapping so he is a happy presenter. 

So there Jackson and I were waiting up front while all the students filed into the gymnasium.  Sylvia came in with her class and ran over to say hi to us.  Then Daniel came in and did the same thing.  I asked them if they wanted to stand by us while we talked.  They both did.  The presentation started and the Guild School representative introduced us.  I then introduced Daniel and Sylvia as Jackson’s brother and sister.  Then I did my little talk.  The whole time Daniel and Sylvia stood next to Jackson and each side of his wheelchair.   They were patting him on the head and rubbing his arms, and holding on the wheelchair in case he tried to roll away.  After the presentation Sylvia’s class stayed and Jackson and I went over to talk to them.  They had lots of questions about Jackson and I let Sylvia answer some of them.  She told them about his special bed and how he likes to kick the sides, which is noisy!  She told them he rides horses (super cool in the eyes of all those kids), has swimming therapy (more cool), and has swings in the basement (way cool).  The kids in her class really loved Jackson and I could see Sylvia realizing how it was pretty awesome to have Jackson as a brother.  When I picked them up from school that afternoon they both thought standing up in front of their whole school with Jackson was the best thing ever.  The loved it!  Then Sylvia said some kid had come up to her after school and said “Jackson is really cool.”  And from that day forward Jackson was no longer a weird mystery to them.  He was just their little brother.  They bring him toys, they play with him, Sylvia has even brushed his teeth and helped give him a bath.  Daniel likes to tell me what Jackson is thinking.  Sylvia even said to me the other day “How could anyone not like Jackson?”  Daniel likes to pet Jackson’s hair, he thinks it is the softest thing ever.  He’ll just sit there next to Jackson talking to him and petting him.  Jackson has loved the extra attention and lights up when the kids are around.  I still think we have a ways to go with them truly interacting and spending time with him, but they are getting there and it has been amazing to watch their story unfold.  As William Shakespeare said “To climb steep hills requires slow pace at first.” 

Exposure

When I was growing up there was a boy in my class named Glenn.  Glenn had special needs.  Actually I think he might have had cerebral palsy but I’m not sure.  Glenn was never in any of my classes, he was always in the special education room.  Sometimes I would see Glenn in the hallways or sitting in his classroom, but that was the extent of my exposure to him.  I remember saying hi to him a few times and just getting a smile or a look from him.  I was curious about Glenn but he was so different I wasn’t really sure how to act around him.  It is really kind of sad to think about now.  Since having Jackson I have thought about Glenn more and more.  I wonder what his actual diagnosis is, if he was born with it or it was a result of something else, I wonder about his parents and their journey of raising Glenn.  I grew up in a very small town in the mountains of Colorado.  There were only 50 some kids in my class and they came from about 5 different towns.  Small town usually means not a lot of services for a kid with special needs. I wonder if there were even things such as physical and occupational therapy for Glenn.  One vision I can’t get out of my head is Glenn walking across the stage at our high school graduation.  He got a standing ovation and I remember thinking it was so cool that he graduated with us.  I wish I could go back in time and watch his parents that day.  I have no doubt there were tears and pride on their faces.  Most of all I wonder where Glenn is today and what his life is like. 

Recently, Jackson and I went to an elementary school to talk at an assembly about the Guild School (the school Jackson attended until he was 3) and to tell them Jackson’s story.  I love doing these presentations.  The kids always respond so positively to Jackson.  I was talking to them about how it is okay to be different, how if we were all the same that would be boring.  And that no matter how different we may all be, we all want the same kind of things – to be loved, to have friends, to be able to do the things we want to do.  This is always an important part of my speech to me because I want these children to know that Jackson is a person too, that he is just a kid like them.  I hope that by doing that they will someday remember Jackson when they see someone different than them and instead of being rude or bullying them, they will have a better understanding of and compassion for that person. 

I think the best thing we can do as parents is to expose our children, at a young age, to all kinds of people.  People with different colored skin, people with disabilities, people who have different interests than us, people who have different families than ours.  When children learn at a young age that people who are different from us is an okay and normal thing, they will grow up to be kindhearted and thoughtful human beings.  They won’t stare or be afraid when they see someone in a wheelchair.  They won’t grow up thinking different is bad.  And that is good.

I don’t know who wrote the following poem but I think it is fitting for this post. 

KIDS WHO ARE DIFFERENT

Here's to the kids who are different
The kids who don't always get A's.
The kids who have ears twice the size of their peers,
And noses that go on for days....
Here's to the kids who are different,
The kids they call crazy or dumb,
The kids who don't fit in,
with the guts and the grit,
Who dance to the beat of a different drum....
Here's to the kids who are different,
The kids with the mischievous streak,
For when they have grown,
as history's shown,
It’s their difference that makes them unique.

Spring Break

When I was a teacher I couldn’t wait for Spring Break to start.  As a new mom of 3 I couldn’t wait for Spring Break to be over!  Whew what an exhausting week it was.  I wasn’t sure I was going to make it through Monday, let alone a whole week.  But somehow I did.  Amidst all the whirlwind of moving the kids in, shopping for supplies for their rooms and school, numerous trips to the grocery store and Costco, getting them new shoes, Daniel developing some weird rash all over his upper body, getting a new pediatrician, finding a new daycare, piles of paperwork, piles of laundry, cooking, cooking, and cooking, we somehow managed to have some fun excursions.  It was a bit overwhelming but I enjoyed spending the week with the kids.

Since we have been spending time with the kids for the last 3 months I felt I knew them pretty well and was ready for them to move in.  Boy was I in lala land.  Ha!  Living with them is a bit different than visiting with them every weekend.  The most incredible thing I have discovered is sibling rivalry.  Oh how I’ve come to hate sibling rivalry!  “He’s touching me.”  “She’s looking at me.”  “He’s walking in front of me.”  “She is standing by the door.”  Good god.  I think it basically comes down to the fact that they each exist.  They both hate that about each other.  In all honestly I have come to truly appreciate Jackson’s lack of ability to speak.  His little noises are music to my ears.  I even resorted to the “no talking for 5 minutes” game.  It didn’t work.  Daniel found a way to still make noise with his fake sneezes and fake coughs.  Which then lead to Sylvia proclaiming “He’s sneezing!” “He’s coughing!”  “No fair!”  Which then lead Daniel to proclaim he had to cough/sneeze, it was all innocent of course.  Which then lead me to realize my mistake in not planning some kind of discipline tactics.  I’m discovering all new joys (or should I say distress) of parenting.  The mind boggling thing is that one day we have non-stop sibling rivalry, then the next day we have two really great kids who play quietly and nicely together. I guess that is nature’s way of preventing parents from institutionalizing themselves. 

In all fairness the kids are actually pretty great.  They are funny, sweet, caring, energetic and just plain fun.  We are really enjoying having them in our home, making new memories and becoming a family.  Our lives are definitely different, no more quiet house, no more free time to just hang out and watch TV or check Facebook, no more, no more, no more.  But the truth is I like it this way.  Oh I do miss the free time and quiet time for sure, but our house is more lively and fun now.  Even Jackson seems to like the new craziness in the house.  It’s been an adjustment for all of us, but adjusting we are.  The kids seem happy, relaxed and secure.  Daniel’s teacher told me this week that you wouldn’t have known he went through a big transition, he hasn’t shown any signs of it in class.  Great news!  I want the kids to trust us and have a sense of security that we are there for them.  So far I think they know that and that is important progress for them after all they have been through over the last few years.  I think it will be a continual work of progress for the near future.

It’s funny to think that just a few short months ago it was just me and my 2 boys with no idea what was in store for us.  Within 3 months we fell in love with 2 kids, built 2 bedrooms in our house, moved them in, and are now a family of 5.  As Douglas Adams said “I may not have gone where I intended to go, but I think I ended up where I needed to be.”

A Secret Revealed

 There is something that has been happening in my life the last 3 months that I haven’t shared on my blog.  I’ve kept it to myself because it seems very precious to me and due to circumstances beyond my control I wasn’t really sure what was going to happen.  Last week a meeting took place that seemed to determine what was going to happen, to a certain degree, and now I feel ready to share the news on my blog.  On Easter two beautiful little children will be moving in with Jackson, Kevin and I.  If everything goes our way, in 6 months (the required waiting period) we can apply to adopt them.  Our family of 3 is becoming a family of 5 and my cup runneth over. 

My husband Kevin and I are both adopted.  I was adopted at birth and Kevin was a few months old when he was adopted.  Because of this, both Kevin and I always planned to adopt.  As our relationship grew and we got married, we talked of wanting to have a couple of our own children and then adopting a couple more.  Mostly we wanted to adopt out of the foster care system simply because there are so many children in need of a permanent home.  Then Jackson was born and we got his diagnosis.  We (well mostly I) hemmed and hawed for quite a while about whether we should have another child of our own.  There is a very small (5%) chance we could have another child with Jackson’s condition.  Although, most of the specialists just feel what happened with Jackson was a fluke.  The truth is I just don’t want to risk it.  I love Jackson to the moon and back a million times, I am grateful that he is my son, and I would no doubt love any child we had, but I just don’t want to have another one who could face the challenges Jackson will have to.  I don’t think it is fair.  Even more honestly, I hated being pregnant, it was miserable, and not sleeping through the night was torturous.  So in summary, I pass on the baby thing. 

We knew the only way to adopt out of the foster care system was to become foster parents.  A couple of years ago Kevin and I started that process and become licensed foster parents.  We have had a couple of foster daughters in our home, one of which I simply loved and adored.  When she left I was heartbroken and it took me a while to get over it.  Then in September we got a call about a couple of kids who were in the system looking for a home.  There were a lot of “ifs” in their situation.  Maybe parental rights were going to be terminated, maybe not.  There was a family member interested but still thinking about it.  It was just too many ifs for my heart to get involved so we told DSHS to call us if they were up for adoption and no one else stepped forward.  I thought about them from time to time, wondering what happened, but didn’t hear anything so figured something worked out for them.  We were ready for more kids and decided that when we got home from our Christmas vacation to Florida we would call DSHS and let them know.  So January 2^nd rolled around and on my To Do List that day was to call DSHS and tell them to find us some more kiddos.  That morning I woke up and there was an email from the social worker letting me know the two kids they called us about in September were up for adoption and looking for a forever home.  If we were interested please call her.  Now I don’t believe much in “signs” and “fate” and such but if that wasn’t some kind of sign I don’t know what is!  I called and within a week we met the kids for the first time.  Right away we loved the kids.  We started spending one day every weekend having them over for the day.  Each of them spent one weekend with us.  The more time we spent with them, the more it felt that they were our kids.  They just seemed to fit with our family.  The week after we met them we started remodeling our house.  We have a newer house with an unfinished basement.  Because of their ages (7 and 8) and being opposite sexes, they have to have their own rooms, they can’t share.  Since we only have one extra bedroom in our house right now, that had to change.  So the two new bedrooms in the basement went from being an idea to a reality.  Kevin did most of the work but we did hire out the dry walling.  As of right now just a little trim work is all that is left to do.  Last week the kids were told they were coming to live with us.  They were so excited!  But not as much as me!  They have been watching us build the bedrooms but we could never tell them that they were for them.  Although I think they suspected.  Now they know the rooms are theirs and they will have the memories of them being built.  This weekend I took the kids shopping and they picked out all new stuff for their rooms.  Knowing their history, this will be the first time they have rooms to really call their own.  They were so cute decorating their rooms.  Everything had to be just so.  It was fun to watch and to be a part of.  Most importantly it made me want to cry knowing how their lives are about to change and that they are going to get the childhoods they deserve. 

I spent about 6 weeks going to the DSHS office every Tuesday to look through the massive files, yes files plural, on the kids.  Their history is heartbreaking, infuriating and at times hopeless.  It was difficult to read sometimes.  But it was during those 6 weeks and through those files that my Mama Bear was born and my heart opened for these kids.  From now on those kids are mine and I vow to protect them and love them as much as Jackson.  To be honest, these strong emotions have surprised me.  In my wildest dreams I would have never imagined us finding two kids who fit into our family so well, let alone that I would fall in love with them so quickly.  I honestly always worried if I would love the children we adopted differently than Jackson.  I don’t know why I worried about that.  I saw how much my parents loved me, and how much Kevin’s love him, I just didn’t know if I would feel the same since we were getting older children whose lives I missed out on for their first few years.  Turns out it doesn’t matter how old or young they are.  Once I realized that those kids were going to be mine, all that love just took over.

Perhaps the best thing for me is the joy and peace these kids have brought me.  I’ve been given the opportunity to be a mom to two little children who desperately needed one.  Let me say this, I am so grateful that I have Jackson.  He has been the most amazing gift and has taught me so much.  I get to enjoy a whole different parenting experience with him.  One that I love and has changed me in so many ways I never thought possible.  What I realize now is that I also desperately wanted to have that typical parenting experience.  I get to share in their accomplishments, their funny moments, their life struggles.  I will get to be a different parent with them.  Lately I’ve been thinking about how incredibly lucky I am.  How my life seems suddenly so fulfilled.  I know there are struggles ahead, I know there will be hard times, but right now I am just filled with happiness.  Recently I saw this quote from Toni Morrison that reminds me what being a mom is about:  “The greatest gift that a mother can give to her child is to have her face light up whenever the child enters the room.”  I foresee a lot of face lighting up in my future. 

Jackson Update

It’s time for a Jackson update!  Seeing that he is the star of my blog, it’s time to let everyone know how the kid is doing.  Long story short, he’s had some ups and downs the last couple of months.

For starters he has been fighting off a cold or two.  Wiping those constantly runny, green boogers never get old.  Ha!  Here’s a prime example, Jackson was in his high chair and sneezed.  Big long booger comes out, down past his chin.  I run to get Kleenex.  Jackson flips his head around.  Big booger flies through air and is now spread across his cheek and into his ear.  Just as I reach him he grabs to rub it.  Thankfully I got there just in time to stop him!  I don’t even want to think about what that would have been like.  So yeah, fun times around here lately.  I also think he has had some kind of stomach virus too.  He’s had a couple of days of throwing up and some interesting colored bowel movements.  Some bouts of constipation have also made for some unhappy moments for us.  Don’t know what is going on with him, but for the most part he has maintained good spirits. 

Unfortunately, Jackson had 2 seizures a couple of weeks ago.  He was at school when he had them so I didn’t see them.  Not sure exactly what brought them on.  Either it was due to his being sick, a growth spurt, maybe it was just random.  It is always so disheartening and scary to me.  I’ve gotten used to him not having them and I really, really prefer it that way.  Then he has a seizure and it is a reminder of how lucky he has been to find the right medicine to stop them.  I hope we don’t see any more anytime soon. 

We’ve continued the Feldenkrais and Anat Baniel therapies and Jackson is doing great with them.  He moves differently, is more aware of his body and surroundings, and seems like he is developing in little ways.  It’s been great to watch the change in him.  It’s also been affirming of the risk we took in taking him out of traditional physical and occupational therapy.  I have come to believe that when you have a special needs child you have to be willing to take some risks.  Whether with therapies, medications or doctors, you have to do what you can to give your child the best chance at life.  It is scary, but as Teddy Roosevelt said ““It is impossible to win the great prizes of life without running risks, and the greatest of all prizes are those connected with the home.”  So true Teddy.

It’s never a dull moment with Jackson.  He’s always switching things up around here to keep me on my toes.  I guess somebody’s got to. 

Keeping Your World Wide

Did another guest blog for the Informing Families, Building Trust this month.  You can check it out at:  http://www.informingfamilies.blogspot.com/