Thoughts on Shannon at 15

Beware extreme honesty is to follow and it may not be for the weak at heart.

Shannie has been having some difficult days lately.  When she was about 2,  I remember so clearly standing with her in the ER - pre G-tube days.  She was terribly dehydrated and inconsolably crying.  Several staff members had attempted, but been unable to find a vein for the IV drip she so desperately needed.  They had all left and just Mark, Shannon and I stood in that room.  We were all exhausted as we'd already had several sleepless nights.  I looked at Shannie who was so clearly uncomfortable and, frankly, she was much more often uncomfortable than not in those days.  I couldn't speak it, but I prayed that if this - pain, suffering, unhappiness, agony - was all our beautiful daughter was going to have please, please take her now.

The fact is God did not take her.  They came in to try one more time and asked if it would be OK with us if they got a line in her scalp.   Apparently this was something that appalled other parents.  We couldn't care less how it looked - just do something!  Shortly after that hospitalization a G-tube was placed - a whole other story.  After a extremely painful recovery I can honestly say it was a decision we never regretted.  It was a huge relief to all of us that dehydration would no longer be a common concern.  My thought was that this was a sign that God promised her life would not consist of more pain than happiness and that has been generally true.  Days like some that she's had lately, make me question.

Shannon's situation is so unique in our family.  Many of our special needs kids came from really hard situations, either physically, emotionally or both.  Growing up, getting therapy of all varieties - they have all healed in so many ways.  Shannon's condition is not improving, nor likely will it.  The spastic quadriparesis, the most severe form of cerebral palsy, that she endures will continue to ravage her body and someday God will say enough is enough.

Since several classmates have suddenly died in the last two years I am more aware than ever of the tenuous nature of her life.  I have no trouble visualizing Shannie dancing in heaven and though it will  be terribly painful for all of us, for Shannon it will be the end of pain and for that how can we be anything but grateful.

How much I have learned from her about contentment and gratitude for the healthy body I've been blessed with and I am often reminded of how much I take that for granted.

Today we rejoice in another year with our sweet girlie and that it was a year free of hospitalizations or surgeries.  We rejoice in every day that she is comfortable and happy and pray for more days when that is true.  Next year - Sweet 16, never truer for a girl than it would be for our Shannie.

Yesterday Callie had speech first thing in the morning.  Mark generally takes her, but Christian had a dental appt. at the same time, so we each took one and I got Callie.  There was a grandmother there with her grandson.  Callie knew the boy and sat right next to him in the waiting room and began a conversation.  The grandmother and I introduced ourselves and chit chatted a bit.  The therapists took the kids back into their respective rooms and the grandmother and I began a conversation.

The first thing she asked was whether I was Callie's teacher or a therapist of some kind.  She immediately followed with an apology after I said I was her mother.  Now, obviously, the fact that she is clearly not my bio-child led her to think of other possibilities rather then immediately assuming I was her mother.  Her apology came after she said something to the effect that I didn't talk to her like a mother, but more like a professional.

I asked Mark later, if that was a compliment or a dis?   By dis I mean stating I didn't sound motherly.  I was a much more touchy feely mom as a younger less experienced mom, but I suppose as I've gained experience I'm just more matter of fact and, well, businesslike about it. Parenting kids, especially those with disabilities is my profession, so I guess if I sounded professional that's a good thing and I'm actually proud of that.  I am totally claiming my professional status.

Now, to come up with a professional sounding title.  How about Chief Progeny Officer or Executive Administrator of Descendants?

Parenting - Sometimes it just throws you a curve ball

Our second Special Olympics practice of the year was last night and Callie had a total meltdown.  Actually meltdown is way too weak a term for what happened tonight, but I can't really think of a descriptor that is strong enough.  

Usually I know what sets Callie off, but last night was a mystery.  She was running around the track the first time stopped and laid down on the track before finishing, but recovered.  It wasn't severe enough to raise my flags.  The next time around didn't go as well.

She was running ahead of me and I was chatting with another parent.  I look up to see Callie whipping her shirt off.  At first I thought it was Christian, it never occurred to me it could be Callie.  I ran as fast as I could as did the coach from the opposite direction.  There was the school's boy's lacrosse team practicing on the field as well as our whole Spec. O team.  I don't know how many people got an eye full, I was too focused on getting her redressed.

She then finished running and spiraled into a the biggest meltdown I've ever been privy to.  She started by pushing a younger girl from behind and then went after her younger preschool age sister.  She pushed then so hard they face planted into the track.  I grabbed her before she got to anyone else and then she went over the edge.  She fought me for all she's worth and if you've ever gotten a good look at her you know she is nothing but muscle.  She was kicking, hitting and spitting and throwing her shoes at me.  I got her to the ground and just laid on top of her to see if she'd stop or wear out.  We were on the ground for at least 15 min. 

 At one point she seemed like she was settling down and I suggested we call daddy or her friend.  I got Mark on the phone and by now I was almost in tears as I wasn't sure how I would get her, Chad and Christian home - at least safely.  She calmed enough to get her shoes on and I had her walk the track away from the other athletes.  I tried to get her to tell me what happened, but she wasn't able to express what the problem was.  

My theories run from a side ache or other physical ailment to hormones.  She's 11 and clearly in the midst of puberty.  Everyone was asking me what I thought had set her off.  It's such a helpless feeling to not know what is causing such distress in your child and a horrible feeling that she'd hurt other children as well.  

The coach told me she didn't think she'd be able to compete because of zero tolerance for violence, which I understood, but was so totally bummed as she loves it so much.  Coach called me later and said she'd be calling the state office today to see if she could give her another chance on the condition that she have someone next to her at all times.  I still have to find someone available to go with us and it has to be someone that knows that if she flips out it can only take a second and if your attention is elsewhere it'll be too late.  She's just too fast.  It'd likely be better if I stay on her and someone else helps with the boys.

It's time to get her up and ready for school and I'm trying to get psyched up to get going.  It's a rare thing for me to be at a loss for how to handle most parenting issues, but this one really threw me and, frankly, frightened me.  Today is a new day - I will rejoice and be glad in it.  I think I can I think I can. One foot in front of the other.  OK - here goes.

The Last shall be First

Our Jacob has brought a couple firsts to our house.  Firsts that after 10 children you just don't really expect and frankly, so far, would have lived a happy full life without experiencing them.

The first first was that Jacob initiated me into answering the age old, "you're not my mother" response of adopted children.  Amazingly none of his previous adopted siblings had spoken these words.  The last time I remember him, well, yelling it at me,  mere minutes later he was asking for my help with something.  Clearly, he didn't mean anything vitriolic by making this declaration.  Frankly it was rather amusing that he could be so intensely angry one minute and not even realize how ironic it was to request my aide the next.

Secondly, Jacob was diagnosed with learning disabilities.  Even though we've dealt with a variety of learning disabilities this label was new to us.  He has come so very far and may even catch up, thus removing this label at some point.

Then today the dentist pronounced that he has an overbite and will need braces at some point.  My reaction with each of these firsts has been - really God we couldn't just have rested on our laurels and delved into the extensive knowledge we've already gathered as ridiculously experienced parents?  Then after I give it some thoughtful consideration I think, well, we won't have to be the older people making sure they do crosswords to ward off dementia.  No, we'll be too busy developing more strategies to cope with the new challenges our children bring every day.

We often receive the compliment - "oh, but you look so young".  This is very flattering, but sometimes I think that's because no one would believe two 56 yr. olds would be stupid enough to be parenting children as young as 8.  I now am declaring it's a strategy for evading dementia.  So, if you too wanna stay young - parent your old age away.  All the cool people are doing it.

October Baby and Adoption

A couple weeks ago I saw the movie "October Baby" which is about a young woman, Hannah 19, who survived an abortion and her struggle with her identity.  Her adoptive parents have kept her adoption from her until a medical situation forces them to disclose her adoption.  "We aren't your birth parents," her father states.  She then proceeds to search out her birth parents and discovers she survived an abortion.

I've been thinking a lot about the movie the past few weeks and find myself frustrated.  Such an amazing opportunity to inform people about adoption in a positive way isn't exactly lost, but wasn't exactly capitalized on either.  During her search she encounters a police officer who asks her what she will do if she finds her mother i.e. not birthmother.  Hannah refers to her birth mom as her "real mom".  Hannah's boyfriend tells her dad, "she's not your daughter".

None of our children were survivors of an abortion, but many have had very difficult beginnings.  All of our children grew up knowing they were adopted.  We can not tell all of them that their birth parents made the best choice for them because they loved them so much as many adoptive parents are able to.   How and when we relay that information is still to be determined, but at some point what we know is theirs to know as well.  We don't deal in deception in this family.

We have had the difficult job of informing one of our adult children that they were the result of a rape. We struggled with how to tell her and whether it was the best thing to tell her, but we also knew it was her truth and she deserved to know it.  We also felt an obligation to her birth mother to honor her by telling the story so her birth daughter would understand the sacrifice she made to give our daughter life.

Not all adoptive families will react as I did and I'm sure many people will feel the overall message is  most important.  I think the fact that adoption is shown in such a negative light over and over again in the movies, especially ones made for children - Tangled and Despicable Me most recently - creates my sensitivity to cinematic adoption messages.

Believe me, I'm not overly sensitive to people's ignorance when referring to adoption, but in a movie which is celebrating life and since adoption is commonly suggested as a alternative to abortion, I expected the filmmakers to reflect adoption in a positive way.  Creating adoptive parents who have deceived their daughter her whole life by withholding such basic information is counterintuitive in promoting adoption.

Yesterday was conference day for Ella and Jacob.  Jacob has struggled with his school work since, forever.  He received special ed. services as a preschooler and was placed in a DCD, Developmentally Cognitively Delayed, classroom in Kindergarten.  Mark and I both thought and stated we did not see Jacob as having delays, he was just struggling.  Whether it was because of his prematurity and early hospitalization or being adopted at 19 mos. and the adjustment to all that I don't know.  But, we always knew he would catch up.

Yesterday I walked into the classroom and the teacher was so excited she could barely contain herself.  She said, "You won't believe what Jacob did today."  She proceeded to tell me as she was retesting him quickly before our conference to check his reading level she started at the G level, the level he'd been working on.  He aced it.  She handed him the H level - aced it and answered all her comprehension questions.  Then the I level and then the J level and that's where he began to struggle a bit.  He is now at the level which is the beginning of his grade.  It's the first time his grade level and reading level are within reach - she declared, "He will be caught up by the end of this year."

We have had the privilege to witness so many fantastic accomplishments with our kids.  We may have made some good decisions along the way that helped them to achieve their successes, but most of the kids have just had incredible perseverance.  The best decision we made was to have Jacob repeat Kindergarten.  We were able to have him take Kindergarten in two different schools which really helped as he didn't have to watch former classmates pass him up.  Our second best decision was moving him to Paideia Academy.  The way they provide their sped services and the small classroom sizes they are committed to along with their school calendar that keeps them in school from mid June till early Aug., so he retains what he learned.  He also has summer fun camp at school which is designed to help with retention and - score - he loved it!

No Not Really

Yesterday after church was cra-zee in the van.  Mark loaded most of the kids up in the van while I finished my conversation and gathered the last two.  The craziness had already begun with fights between Callie and Christian and Shannie was very unhappy for some reason.

I jump in the van as Mark runs back into church to help load the storage van as it's his Sunday to help and off we go.  I decided to do the drive through.  Ella and Jacob had play date exchanges, so Jacob was with his friend and Ella's friend was with us.  Ella starts taking down the orders.  Shannie is still unhappy and crying in the back of the van.  Callie is generally patient with Shannie, but yesterday it was just too much for her sound sensitivities.

As I'm ordering, Calle starts to yell at Shannie to be quiet.  Finally I complete the order and try to cajole Callie.  Now, she's thrown her earphones, that she wears to muff the sounds, and she's taking off her seat belt.  Ella's friend undoes her seat belt and slips into the front seat, sweetly saying, "I think I'll just sit up here."  Callie starts catapulting herself over the seat towards Shannie.  Ella grabs her and Callie's face is in Chad's face - thankfully not Christian or it'd been a total knock down drag out fight.  I'm yelling at Chad, "'Push her back Chad", but he isn't able to comprehend what he should do.  So, I stop the van in the drive through line, remove my belt and grab Callie turning her around and telling her to calm down.

It should be noted that all during this Ella and I are hysterically laughing.  Perhaps we weren't exactly conveying to Callie the seriousness of her behavior, but come one, it was crazy funny.  Callie calms down a bit and we get our drinks, but have to pull forward into the #1 spot to wait for our food.  Finally the food comes and I realize I forgot to order Ella's friend's food.  So, Ella and said friend go into the McD's and order her food.  I notice Callie putting a burger wrapping into Ella's bag, but didn't think about it.

Ella and friend return and we're just about to leave and Ella says, "Hey, where's my burger?"  Oh, so that's what Callie was doing.  She had eaten all her lunch and then Ella's in the time that they spent inside ordering friend's food.  So, of course, I didn't dare go inside and Ella didn't want to go in, so through the drive through line we go again.

I was teasing good natured friend and said, "Doesn't this sort of stuff happen in your van?"  She smiled and said, "No, not really."  Ya, I didn't think so.