Monday, October 21, 2013

Rehab

I recently read a quote by Jon Bergeron, Ph D. for Hope for Orphans.  He said "Adoption day isn't the first day of happily ever after.  It's the first day of rehab."  Reflecting on our week at Outdoor School I think this was a good reminder for me.  In many ways our adoption experience has been ideal.  There's been the normal adjustments when adding another child to the family, but he came home sleeping through the night, is a pretty content boy and has fit fairly easily into our family.  It could seem like happily ever after from our side.  But from his side, it is rehab and we as parents need to be mindful of that.

I was getting ready to take the two youngest to their class the first morning of Outdoor School.  My plan was to stay with our son the whole time, but a part of me wondered if he'd be fine since things have been going so well.  I set him beside some toys and took my daughter across the room to change her diaper.  He quickly realized I wasn't beside him and while I could see him, he did not see me.  He fell apart.  Deep sobbing cries that he cried when we first took him from his foster home.  I finished with my daughter as quickly as I could and took him from the worker.  We sat on the couch while I sang to him.  He cried.  I rocked him.  He clung tightly.  I whispered I loved him.  He kept his head against my chest.  I told him I wasn't leaving him.  Slowly he looked up at me and then set his head back down, his grip remaining firm around me.  This was common in Hong Kong and our first few weeks home, but hasn't happened the past few months.  This is rehab.  His experience has been that new places become permanent and care givers disappear.  And while he is an easy going boy it will take time to see that Mommy and Daddy always come back and new places are not something to be feared.  Overall he had a great time running around outside and playing with the other kids at Outdoor School, but we made sure that my husband or I was with him all of the time.  It was a good reminder that the voice that whispers to keep him close needs to be heeded for this time of rehab, however long it may be.

Saturday, October 19, 2013

During college I worked in Developmental Therapy as a Therapy Technician.  After graduating my boss moved away and I was promoted to her position of Developmental Specialist. (It still makes me laugh that they gave a 20-something childless college graduate the title of Developmental Specialist.  As a mother of four now I can see that I was fairly clueless, in the practical sense, of childhood development).  Many of the kids on my caseload I saw in various settings; at home, at school, out in the community.  Overall, their behaviors were pretty consistent.  One little girl, however, was a very different girl in therapy and at school than she was at home.  I knew I was no expert on parenthood, but could see a lot of the behavior problems she had at home had more to do with parenting style than her disability.  Her mother wanted things to be easier at home, but insisted that the behaviors were due the disability.  The daughter was defined by her disability in eyes of her mother.

We attended Outdoor School last week as a family and it was the first time we were around a large group of people who didn't know that our son has Down Syndrome.  While he does have some of the facial features common in people with DS, it's not always all that obvious and often times people are surprised when they hear his diagnosis.  However, the way he interacts with his world is like a child about 9-12 months younger than his chronological age.  So, at Outdoor School, I struggled for the first time about how to introduce my son.  When asked about his age do I tell them he's 2 and leave it at that.  Do I say he's 2 and has DS?  It probably depends on the situation, but I'm wondering how to decide when it's necessary to reveal his diagnosis.  Where is the line between defining my son by Down syndrome and facilitating how he and others interact together?  I think, so often, people with DS are defined in the eyes of others by their diagnosis.  They are not "Sally who has DS."  They are the "Down Syndrome child" and in a way loose their identity to their diagnosis.  DS certainly affects who my son is, but he is so much more than DS.  I guess I'm not sure how to express that in a simple introduction.

Tuesday, October 1, 2013

Good Gift

They are words not uncommon to a couple expecting a baby.  Words we probably uttered ourselves at some point in our three pregnancies.  "As long as the baby has 10 fingers  and 10 tens I'll be happy" or "As long as the baby is healthy I'll be happy."  And now I wonder why did I think my happiness should be  based on the health of my child.  In some ways it reminds me of the times I prep my kids before their birthday parties.  "Now remember to be thankful for every gift you receive, even if it's not what you were wanting or expecting."  A gift.  I wonder if we see children with disabilities as a gift.  As a good gift.  I suppose I've been more aware of the words people use surrounding children since adopting our son and wonder what attitudes I had before becoming a parent of a child with a disability.  A family I know was told this summer that they "deserved a healthy child."  There is a whole other discussion about what we as Americans think we deserve, but for this discussion think of the opposite of that statement.  When a child with a disability is born the opposite is either that the family didn't deserve that child or they got exactly what was coming to them.  I don't believe the person meant it that way, but the statement itself reveals the value we place on "normal," typical and healthy.

Everyone of us is living life with challenges.  Everyone of us needs the help of God and a community of people to overcome these challenges.  Most likely my challenges and your challenges are easier to disguise than the challenges my son faces.  What value do we place on people based on their challenges?

My children have received many different types of gifts.  Some work as expected right out of the box.  Others take more time and effort than anticipated.  Both are good gifts.  And so it is with our children.  Psalm 127:3 (NLT) says "Children are a gift from the LORD" and Matthew 7:11 (NIV) says "If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!"  Good gifts.  Our children are good gifts.  The bible does not qualify it to say "typically developing healthy children" are good gifts.  A child with a disability may not be what some were envisioning, but God whispers "Trust me my child.  Trust me in the unexpected.  Trust me through the difficulties.  I have given you what is good."


3 Months Home

It's really quite amazing how different three months can feel.  When waiting to bring our son home it felt like and eternity.  Now that he's home I can't believe how quickly the time has gone by.   We've taken this time to get settled in as a family of six and begin to get to know our son.  He is a mover, he loves to be in on the action and he's quite the determined little boy.  He enjoys giving and getting hugs, whenever he hears music his little body can't help but bop along.  Our big boys still enjoy playing with him, but they've gotten past the point where everything he does is cute.  There's the normal "Mom! He's getting into my ______!!"  Our daughter is coming to terms with the fact that she is no longer the youngest.  She had to let him know exactly who's boss, but she toned that down a bit (with a good deal of parental supervision!)  She's now claimed him as her brother.

We've started school now as well.  This year I have two kids doing school and two little ones.  The first couple days were . . . well, they were awful quite frankly.  I wondered how in the world we would get through this year, but I adjusted my expectations and we made some big changes in the schedule and things have gone better overall.  I may have some more schedule tweaking to do.

We've also used the time to get a feel for what kind of therapy he may need and how we would work that into our schedule.  As his evaluations for speech, physical and occupational therapy approached, I was feeling like we would probably need minimal help at this point.  As far as his physical development goes he came home doing more than we expected and he's just continued to progress.  Verbally, he's not forming words, but is quite eager to communicate using sign language.  The physical and occupational therapists said at his age, these two therapies as pretty closely connected and the physical therapist felt that he really didn't need much outside therapy at this point.  She gave me some activities to work with him on and we'll go back to see her in a month and then again in about six months.  The speech therapist works mainly with having children learn to vocalize and since he is more interested in communicating through sign right now, she gave me some ways to work with him to help with his beginning vocal sounds as we continue to work on sign language.  In the end he won't be needing a lot of therapy right now.  As he gets older, that could very well change.  I am thankful to have a background in therapy, because I think it's made it easier to work with him.  However, I am very glad to have therapists who are willing to work with us and help us know best how to work with him, since my training is not in these specific areas.

Do you know what his biggest assets in therapy have been?  His big brothers and sister.  He's so determined to keep up with them that he's learned to hop on his little push car to keep up with them (something the physical therapist was surprised he could do), he can climb up on the couch with them now and he's willing to walk across the uneven grass to follow them.  I'm drawing the line at learning to climb on the dining room chairs for now, though.  The last thing I want to see is his little grinning face as he proudly stands atop the table.  While teaching him signs, I was really wanting to use the sign for "more" exclusive to eating, so I know that means he's hungry.  For a few days I was trying to teach him the sign "again" if he wanted to do another activity.   I knew he could do it.  He gave a few half-hearted tries, but just wasn't too interested.  Then I was squirting him and my daughter with water which was quite the fun game.  I signed "again" to have him ask for another squirt, but it was my daughter that started signing it.  He watched her closely and then signed "again" perfectly.  It has since become one of his most used signs.  Most of the therapy at his stage is fun and games and the older kids are eager to help.   Group therapy helps make the learning more fun for him.  :)