Friday, December 16, 2011

God's AMAZING plans

I was thinking about Christmas this year and how to make it more Christ focused for my kids.  I started thinking about the books we could read or ways we can give to people in need.  I love this time of year.  There are so many activities I want to do to share with them.  Then I started thinking about Jacob and how I can teach him.  He doesn't understand the word mommy.  What will he be capable of learning when he is older?  I started thinking about how difficult it may be to describe something to him that he cannot see.  I hear that autistic and asperghers kids take EVERYTHING very literal and therefore things like faith are hard to explain. 

Later I saw a video of a blind autistic child singing to a huge group at their state capital.  He was singing "Open the Eyes of My Heart Lord". I couldn't watch it without weeping and boy when I say weeping that is an understatement.  Having a special needs child has made me into such a sissy.  I can't even watch commercials without crying.  I wasn't sad, though, this time.   I wasn't thinking, "poor baby he is blind" or "that's so sad he is autistic".  All I could hear God telling me was that He has this AWESOMELY AMAZING plan for Jacob!  Its like I knew in that very instant that God can do whatever He wants through Jacob no matter what disability or struggle he may face.  God is being glorified so magnificently through this 10 year old who is blind and autistic singing to God to open the eyes of his heart, what can He do with my Jakey?!! I felt in my heart at that very moment that I better not let anything keep me from sharing God's word with my baby.  He may not understand the word mommy, but God can do anything.  So I am going to stay faithful to my Father and teach Jacob everything I can and sing to Him everyday about Jesus and I know with all of my heart that God will use my precious baby in some way to bring Him glory.  I have so much peace about that.  What a blessing God has given me this Christmas season.  He is continually blessing me and I am continually in awe and so very thankful. 

As far as what's going on with therapy and so forth we have stopped Jacob's ABA temporarily because we are out of funds for it.  I did start a job and will begin the therapy soon I hope, but it isn't enough for much.  Somehow I have to believe that one day children with no coverage for autism will be able to get help at an affordable cost.  I really see changes from ABA so I know it works, but we can't afford to spend every dime we make on therapy.  I have been considering getting the training and trying to do it myself.  I am just curious as to how to handle my other kids during that time.  I am currently still trying to teach Jacob simple sign language and working on all the basics with him.  He is an usually happy baby and that makes things so so much easier. 

 I was sent a poem by my mom today and it really touched me.  Thought I'd share...


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

Wednesday, December 7, 2011

Jacob's progress

Jacob has made some real progress lately and I wanted to share with everyone.  In the past few weeks he has learned how to clap.  This may sound simple to some, but its a huge accomplishment.  He is a year a half and has just now realized he can clap his OWN hands.  Woo hoo!  He is also making excellent eye contact and responding when we call his name.  He seems to be engaging with other kids to play.  I am so excited about how far he has come lately.  I can hardly wait to hear him say his first word.  He has babbled dadada, but does not relate it to his daddy yet.  That will be such an awesome day when he does!  He doesn't wave bye bye but it seems like he is trying. He is still stimming by hand flapping or spinning around in circles.  He can't eat real food yet, although he puts peas in his mouth and then spits them out, which is the first step!  He isn't communicating much although he has begun to shake his head "no" when he doesn't want to eat, which happens to be every single time I try to feed him.  We are working with an occupational therapist to help with the feeding.  I have started some simple sign language since he can use his hands now, but he hasn't caught on yet.  Hopefully we can get him communicating soon.  He has learned how to distinguish a train from a cup.  I don't know if he actually knows it is a train though.  We teach him by holding the train and the cup out and asking where the train is and putting it closer to him so he chooses it and then clap and praise him.  He loves the praising so much that eventually we can keep the cup and train side by side and ask where the train is and he chooses it.  Its so strange to be teaching something so simple, but it seems to be working.  We are now moving on to the next item.  Its one item at a time and we have to change the distractor. Meaning I can't use the train and a ball and say where is the ball because then he will choose the train because that's what made him receive praise.  That tells me he doesn't quite understand that the train is a train.  But with autism like his (where language is the biggest problem) this is the only way we can teach him....Or at the least the most successful way so far.  He has to memorize.  I think that's how therapists teach behavior issues with kids with autism and aspergers.  They role play and let the kids learn and memorize how to respond correctly or appropriately.  We also work on simple 3 piece puzzles where the pieces fit inside a wooden puzzle.  We take the pieces out and just give him just one piece.  We show him how to put it in and clap and praise him and then let him try again with the same piece.  I would say he puts it in maybe 20% of the time, but we are working on that.   Anyways I just wanted to give an update.  I have started watching a newborn to help with the costs of therapy so that we can get our own house so please say a prayer that I can balance all the responsibilities of Jacob, homeschool and Jordan, Tyler and the new baby.   I will post more updates as we go.