Tag Archives: friendship

the challenge of girls and autism

It’s hard to have a daughter with autism.  I mean, autism is hard no matter what, and I’m sure boys present their own particular challenges, but I’ll leave the parents of boys to write about those…

One of the problems we face with my daughter is having girlfriends.  Socialization isn’t easy for children with autism.  And once children start to get older, same gender relationships start to take precedence – girls hang out with girls and boys with boys, especially if it’s just two or three kids hanging out together.  I’ve seen it in the life of my “typical” daughter.  The problem is that girls with autism are not very common.  In preschool she only had ONE other girl in her class.  From kindergarten through third grade she also had only one other girl in her class and the two became very close. This was great except that my daughter is in a district-wide special education program so the kids come from far and wide – and this girl lived a 1/2 hour away from us.  Playdates, which had to be planned carefully to begin with due to their individual issues, also had to have an hour of travel time built in.  In fourth and fifth grade she’s had TWO other girls, which has been WONDERFUL – the girl she’s been friends with since kindergarten, and a new girl that she really enjoys too.  We still don’t have playdates with them as much as we’d like because of the travel time (this other girl is also about a 1/2 hour away who has parents who both work full-time), but at least they’re buddies at school.

I recently found out the girl my daughter has been friendly with since kindergarten is being mainstreamed.  She deserves it.  She’s always been higher functioning than my daughter and for the past two years has spent the majority of the school day outside of the special education class, in inclusion with an aide.  But my daughter will miss her terribly.  I don’t see them being in each other’s lives from this point on because this girl will be in a different school, (in the town where she lives), learning with her typical peers, while my daughter will still be in the self-contained special education class, nowhere near her grade level in ANY subject.  My daughter is sad, and I’m sad for her.

My daughter will still have the second girl with her, and I have to hold onto that.  And she gets along well with the boys in her class.  But with no one, boy or girl, who lives near us, her “out of school” time will continue to be completely dominated by family – NOT friends to “hang” with or talk on the phone, or face-time or text (she can barely use a keyboard anyway).  It’s hard for us to participate in after school programs because finances are tight, and extracurriculars for kids with autism are EXPENSIVE.  She needs practice socializing, and I wish she had girlfriends she could hang out with, yet the only people she socializes with outside of school are the family, and on Sundays, the folks at church.  In some ways it’s a lonely life for her.

No magic words to say – no simple solution – just the reality of “what is,” and sometimes “what is” just plain stinks.

 

Being “in control”

It feels like not so long ago I wrote about journeying with someone to the end of their earthly life (here).  Now I’m doing it again, this time, not as a pastor but as a friend.

I have known this woman for 15 years – never married, fiercely independent, deeply faithful to her church.  In the past two weeks she received a terminal diagnosis and decided to enter hospice care.  Because she has no family nearby (her closest relative is a niece six hours away) she named me as Power of Attorney and the representative in her Advanced Directive for Health Care (in the USA a PoA takes control of a person’s affairs when they can no longer take care of things for themselves, and the ADHC names a person to make health care decisions).  So – I’ve been running around trying to find the original PoA document with the “official” seal, getting my name onto her bank accounts, talking to social workers, hunting down her safe deposit box keys, and sorting through papers that she was leaving everywhere as she was “losing control” of things.  All this official-type work at the same time we were trying to find an inpatient hospice for her to live out her last days, get her transferred, and sign all THAT paperwork.

It’s disconcerting to be “in charge” of another adult human being.  I think it’s made me feel more like a child.  I have found myself second guessing every decision I’ve made for her so far, even though I know I’m acting in accord with her wishes.  Perhaps I’m feeling insecure because it’s been so long since I’ve been on the “personal” end of a death.  As a pastor I’ve seen plenty, and I know what to do and how to act.  But I am NOT this woman’s pastor, I am her friend, and of course that makes things different.

I sat with her for a while today – I brought her CD player and some of her music that she loved.  I brought a picture that means a lot to her, and I “think” she saw it.  She has spent most of the past 24 hours sleeping, with moments where she will open her eyes, but I’m not sure how much she is taking in.  Often hearing is the last sense to go, so that’s why I wanted her music to be with her.  They increased her pain medication today, so I assume she’ll be sleeping more and more now, and that’s fine as long as she’s comfortable.  Our number one goal is to have her be as pain-free as possible and that her death be as peaceful as possible.  That’s what SHE wants, and that’s what I want too.

I’m sharing this for two reasons.  First, just to share what’s going on this past week and why I haven’t posted that much, but also because I want to make sure that all of you reading this have your own affairs in order.  Don’t wait till you can’t take care of yourself anymore.  Have these documents I mentioned above.  Let your medical wishes be known to your family and friends.  And hand over control before  you lose control – that will be a great gift to whoever you name to be in charge.  That way they won’t have to do the running around I have had to do, and will just be able to “be” with you.

It will be hard to say goodbye to this fixture in my family’s life, but she is a woman of faith, and seems very secure in her journey towards her savior.  If you’re a person of prayer, please say a little one for her, and all those who will grieve her loss.  Thanks.

Grace in Friendship

My kids are on vacation this week.  On Sunday we drove to visit some friends of ours that have a cottage in the mountains.  Their cottage is part of a mountain village community.  We had been there in the summer, but never in the winter.  And as much as we would’ve liked a complete change of scenery (that is, someplace WARM), we just don’t have the money.  So we went for a quick overnight with our friends.

Our friends are wonderful people – of course they are, they ARE our friends after all!  They have a teenage daughter only one year older than our teen, and thankfully the girls get along GREAT.

They had a son who died three years ago, at the age of 15, a victim of depression that led to suicide.  They manage to get through each day, smile, and even laugh – they have to, they still have a daughter to love and raise.  But they clearly are not the same, and never will be, how could they be?

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the sun shining through the trees on our walk

Visiting with them is grace.  There is grace we hopefully extend to them – that it’s ok to be “however” they are feeling.  They don’t have to pretend with us.  They don’t have to put on a happy face, but we also don’t trap them in sadness either.  They laugh with us, they love our children, they get on the floor and play with them.  And I hope that brings them joy.  But they also gift US with grace.  The grace of an invitation to spend time with them.  The grace to accept our children with all their quirks.  The grace of allowing us to be “however” WE are feeling too.

the waterfall

the waterfall

    During our all too quick visit, we enjoyed wonderful homemade soup and pizza, and a movie night complete with popcorn (NO cable or internet in the mountains!).  Our kids helped them make a yummy breakfast, we played games that everyone could play – and a trip to the mountains in the winter wouldn’t be complete without a wonderful walk in the snow.

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the lake, frozen over and snowed upon

Within their community there is hardly any traffic, and certainly no sidewalks, so we could walk in the one lane roads the plow makes to get to the cottages.  There is a beautiful stream and small waterfall on the community property, as well as a lake where there is swimming in the summer.  It’s breathtaking during the summer, and we discovered equally so in the winter.  We visited all the sights and marveled at the beauty of God’s creation.

an angel in the snow AND in person

an angel in the snow AND in person

Because even though I am beyond disgusted at the amount of the snow we’ve had this year, and even though I KNOW that snow is the same everywhere, somehow the snow seemed more beautiful there then at home.