Thursday, August 15, 2013

update on grace...

six years ago, this little cutie joined our family and we have never been the same...

Grace came home to join our family six years ago today.  It hardly seems possible.  I remember that trip so well.  It was the only time Mark and I have ever spent with just Grace.  It was filled with anticipation, the same expectancy that filled us every time we traveled to add a baby to our family.  However, it was colored with doubts and fears because we didn't know what to expect.  And truthfully, we find ourselves in that same place today.  We look forward expectantly towards Grace's future, but we have no idea what to expect.

 The number one question I get from people is, 'How is Grace?'.  The answer I give depends completely on who is asking, how strong I am feeling emotionally and what is going on in our family.  So I guess you could say, the answer I give is totally dependent on my circumstances (which are always changing).  The short answer and the one I most frequently give is; Grace is fine.  And she is.  Grace is doing well, really well.  She is super healthy and happy and seems to be thriving in our family.   But that is only part of the story.  Because the truth of the matter is when I get asked 'how is Grace doing', some people really want to know.  How she's doing?  That's when it gets difficult to answer because there is no easy answer.

Our sweet girl is making progress and growing but is still super, super delayed.  I struggle with the words and the format to give you an update because it is so nebulous.  All of her progress is anecdotal instead of measurable.  By that I mean, she is making progress and we see it but it is not progress that can be measured or tested by her doctors, teachers or therapists.  Because my heart could not be more full of love for her than it is today, on the anniversary of her homecoming, I am going to try and give a realistic and honest update.

Grace still has no diagnosis.  She has a school diagnosis of Mental Retardation, which provides her with the special schooling, classroom and therapies she needs to grow and learn.  However, without a diagnosis, we get no support or help with her care.  I spent years searching and praying for a diagnosis and finally was able to come to the realization that we may never know.  Some days I am more okay with that answer than others.

Grace is considered total care.  Which means she needs every aspect of her care taken care of for her.  Which means that she is; 1) completely non-verbal she can't speak or communicate her wants, wishes, needs or desires in any way, 2) she still eats most of her food in a pureed form and needs to have most of her food fed to her and she does not drink any liquids at all, 3) she is still in diapers, 4) she can walk, however she doesn't respond to her name on a regular basis so this is a HUGE safety issue.  And even though she can walk, sometimes she chooses not to and needs to be carried where we are going (she is about 40 pounds of dead weight and getting bigger).  Truthfully, she may never have any self-care skills.  That is a hard reality to face.

I would consider Grace to be trainable vs educable.  By that I mean, she can be trained to follow a routine and the amazing people at her school have done a great job with her on this.  She knows exactly what to do when she gets to school because she does the same thing day in and day out.  We have also had success with following a routine for her at home.  However, with limited cognitive ability, they put her at about a 12 month old cognitively, it is clear that Grace doesn't make clear choices and doesn't have the ability to 'voice' her opinion on any matter.

A clear example of this is Grace doesn't ask for help.  If a toy she wants to play with is off, she will bang on it until either she gets someones attention who understands that she wants it on or she looses interest in the toy. 

Or a more recent example is, the other day I was feeding Grace her snack while cooking dinner.  She was feeding herself some booty and playing with the chip clip from the bag.  All of the sudden, I realized that she had just frozen in place.  She wasn't eating or playing or anything.  She was just frozen in place.  I looked at her hand and she had gotten the chip clip stuck on her hand.  But being unable to communicate in any way, she just froze instead of asking for help.  Thankfully, it was a clip that pinched her but didn't really hurt her or cause any pain (I think).  Since I realized what was going on, I took the clip away from her and she resumed her snack.  But I will say, I had tears streaming down my face because my little girl was unable to ask for help when she needed it.

On the more positive side, I recently put her on our big wheel (see picture above) and she started pedaling.  I didn't know that she could pedal a bike, I just put her on it to see what she could do.  Evidently, they taught her to pedal at school, so once I put her on the big wheel she 'knew' what to do. 

Grace clearly prefers certain people over others and remembers people that she hasn't seen in a while.  We see this with friends and extended family all the time.  Recently, we saw friends who we hadn't seen since they moved to Hong Kong last August.  Grace clearly remembered our friends because she sought them out both in church and in our home.  She clearly seeks out certain people and leans on them or grasps their hands to have them clap with her.  Grace has the ability to bond with people and make connections.  The picture below (on the tire swing) shows Grace at camp with her one of her volunteers whom she clearly bonded with. 

Grace is the loudest member of our family.  She may be completely non-verbal but she is very vocal.  She frequently expresses herself by uttering happy screams.  Very loud screams.  This can be done for hours and hours.  It is particularly special while we are in the car on a long trip or having dinner at a restaurant or at night when she should be sleeping (she says with heavy sarcasm...)

Grace might be non-verbal but she is very musical.  She loves music and will often hum or make noises to the words to a song.  She loves to clap.  You know you are one of her preferred people when she comes up to you and has you clap with her.  One friend loves to tell a story of how her son was with Grace in one of the preschool rooms at our church.  She was sitting on his lap and he was purposefully clapping off beat to the song.  He says, Grace reached up, took his hands and got him to clap on beat.  I love that story!

Grace is the most pleasant child.  She is always smiling and happy.  She is truly a joy and has brought a lot of joy to our family and the people who take care of her.  We are so thankful that we don't have to face mood swings or behavior issues with Grace.

Our family has gained so much by having Grace a part of it.  However, having Grace a part of our family sets us apart on a daily basis.  Our family is different, always.  We are a family that has a person with special needs in it and we will never be a 'normal' or 'typical' family.  Our boys have had to deal with things that most children just don't have to deal with or process.  We know that these experiences are shaping them into the men God designed them to be and giving them a compassion that you can only have by living it.  But sometimes it is hard to be different.  It is hard to have someone in your family that has special needs.  It is hard to have someone who is different in your family because that causes you, by extension, to be different.

We love Grace and can't envision our family without her.  We thank God for the strength He gives us to face the days ahead that are filled with such uncertainty.  And we thank God that He looked at us and found us worthy of this gift of Grace...



Donna said...

I love the way you write. I love your openness and honesty! And I love your family! It's wonderful to hear all the "can do's" and it's heartwarming and beautiful the way your lives have been touched, enhanced and challenged. Sure do hope we cross paths again one day! ...Nonnie included!

Marjorie said...

Wow, Anne. What an amazing update. Having a learning delayed child and one who is transgender (not to mention being a single parent), you struck a chord with your description of how your family is "different." I also feel the same about how, while there are differences, you are grateful for them. I think about my Jackson. There were many times when I felt that fear -- the fear when you are not sure if your child will be able to care for themselves -- to learn, to walk, to participate in society. I can't imagine what I would have done if those challenges had materialized (and to a certain extent, they still may). You handle it with grace. I, too, have no firm diagnosis. Jackson had been classified mentally retarded. I know what it's like when your friends are talking about all their kids have accomplished, and you compare your child. So I am in awe of you. Grace was meant to be with you. She has enriched many lives, including mine for just having shared in her story. All the best, Marjorie

Hannah said...

Okay, I keep trying to leave a comment, but blogger is having issues with me.

I loved your update. I love your honesty and I love the love that you have for your family.

Melissa Leigh said...
This comment has been removed by the author.
Melissa L said...

Hi! It has been a while since I visited your blog. I was going through my saved bookmarks & found your blog so I thought I would catch up. I am so sorry that you do not have a diagnosis for Grace. Has she been tested for Autism? Some of the things you said above makes me think Autism, but I could be wrong. My daughter, Ashleigh, was diagnosed with PPD-NOS (a form of autism) in March. Her main diagnosis, HSP, took us 8 years to get. I pray that you receive the diagnosis very soon. I know it is hard. (I posted this before on my wrong google account).