I spent this chilly May morning in my basement with the two boys, cleaning and sorting through our buzzilion toys.
Before having Roa, I was pumped up to start my own little preschool in our basement. Bryan and I started organizing the space as soon as we moved in with toy shelves, tables and chairs, alphabet hung on the wall,... the whole works. After years of teaching, I was excited to do it MY way without the bother of teaming with other teachers, therapists, etc. I was excited to work with the "typical" child and was feeling a bit burnt out from the "special needs" scene. Set up that wonderful, enriching environment, plan hands-on learning activities set to music. Laugh and frolic together and earn a little extra cash as I enjoyed my new career as a Stay-at-home mom.
Well God had other plans for me. No other children to care for when I had my Roa needing me full time. So, that lovely play space in our basement has been exclusively the King's... until....
Enter, Prince Gunnar.
So both boys were down in the basement with me. Both boys wanted the same exact toy. Both boys wanted and NEEDED mom to be right there beside them.
Pick a toy up, throw it in the bleached water, run over to Gunnar as he cried to be picked up, run over to Roa as he screamed from his blanket because the Animal Train was ramming into his forehead...., run back to the water to lay the toys on a towel, run back to Gunnar who now was being tumbled over by two wrestling dogs,....restart the bubble machine for Roa, race back to Gunnar who grabbed a dog toy to mouth, run back to Roa because he wanted to roll over and insists I be beside him for the big event..... place Gunnar beside Roa to stop my running, return to the bleach tub, only to hear the shrieks of Roa as Gunnar pulls his hair....
You see, I spent years playing with children at the daycares I worked at, at the schools I taught. I visited children's home and played with their own toys with them and encouraged parents to join in. I studied play and brain development and earned my Master's degree in education. I taught play to learn/learn to play classes for parents.
Yet this chilly May morning, I actually forgot all my knowledge and tried to get some work done when both my boys (and both my dogs) just wanted me to play.
The funny thing about kids.... you can buy them the Willy Wonka World of Toys, but until they have your full attention, until you show them the joy that toy can bring, it ain't gonna happen.
We had our IEP meeting with Normandy Park School Staff on Friday. It was such a crazy experience for me- to not be in the teacher seat, but be there as a parent. We met Roa's teacher for the fall. Lori was very nice and took the position of recorder of all topics we talked about at the meeting. She seems like a great teacher, ready to take on the challenge of King Roa! ;)
He can be a handful... and a non verbal one, at that!
That part of Roa, his inability to verbally communicate, has us in the most distress about sending him to school.
As a parent of a child with special needs, it appears as if God has granted us the super power to read Roa's mind. We are now telepathic in regards to Roa's needs. Roa can whine, whimper, scream, or shriek and we know if it is joy, fear or a need to be met. When we have a babysitter or relative watching Roa, we try and explain the different sounds and their meaning. When Roa is at therapy, I am usually there to mind read and pass on the info.
What will the school staff do? Will they know what he wants or needs? How will Roa fair? Will he get frustrated, angry, sad? Will he be able to interact with the other kids?
It is not just the interactions he may miss, but also his physical positioning needs. Since Roa doesn't move on his own without his gait trainer, how will he communicate that he is tired of sitting/standing/squatting/ kneeling. etc..? Will he get enough time on the floor to attempt floor play?
Will his iPad save the day? Will it be the tool to help him "talk", along with his few attempts at words? Will they understand?
They will get in a groove. They will figure him out.
But it is so hard to think of sending him off on that school bus with me, his Medium, standing helplessly in the doorway watching him go.
Beautiful weather here in Minnesota! Finally! Hopefully it will stay this way for a few days.
Roa has been enjoying his time outdoors as always. While doing some work in the front yard, Roa did a wonderful job of taking out all the dead plants that I put in the wheelbarrow. Working on skills is the way I looked at it! My little helper.
We are back to cruising the neighborhood in the gait trainer. Up and down we go, greeting neighbors as we pass. I am quite a sight with Gunnar strapped in the carrier to me and Roa giggling from the gait trainer. That's how we roll 'round here! I have had a few people out for a stroll ask if I need any help. Is that what it looks like. people? :)
Roa had a great session of PT with Andrea at Courage this week. He was running around the center in his gait trainer! Andrea has never had the pleasure of seeing him on the go, so it was a nice way to end our 8 week session before taking a little break from one on one therapy there. Andrea gave us a reverse walker to try over the next month or two. She also loaded us with ideas for pool time therapy as the summer months of aquatic therapy time are upon us.
After Roa turns 3 in June, we will be beginning hippotherapy with Courage Riders. We are very excited to give this form of therapy a try. I have heard wonderful things about the benefits of horseback riding for kiddos with cp. Improvements in trunk control and balance as well as decreased tone. We are really lucky that we got into the program as there is a waiting list. God truly had a plan when one of the therapists for the Riders ran into Roa and my sister, Vickie, at Functional Kids during a speech session. She thought Roa would be perfect for the program, so yippee ki yay, off we go!
Roa had a great session of PT with Mary and Craniosacral time with Kim. Something seems to be clicking in that brain of his and he is allowing more weight bearing in his arms in 4 point stance. God willing, Roa will learn to keep up the strengthening of his arms to actually move himself across the floor someday.
Next week Monday, we are off to tour the Early Childhood Program at Normandy Park and meet some of the therapists and teachers there. Friday is Roa's official IEP meeting to enter the school system. Big and scary day for us! We are still sorting out the details of Roa's school for the fall and might do a combination of St. Jude's preschool with ECSE program in an every other day set up. Many decisions to make on Friday.
Well, happy Mother's Day to all you moms out there who devote your lives to your children. May you find time to celebrate the graces you have been blessed with!
I apologize for my absence, but need you to understand that my life has changed and getting time to journal with you is limited. I also need you to know that I think of you often.
I blog in my head as I drift off to sleep for my 2-3 hour slots of slumber time before Sir Gunnar beckons to be fed or the King requires repositioning in bed (now primarily Daddy's job). I blog in the car as I drive to and from therapy sessions with King Roa. I blog in the shower. I blog in the rocking chair as I nurse.
You are always on my mind, dear Blog. Because of you, I can get out all my emotions, both positive and negative, concerning our journey into the Land of Cerebral Palsy. Because of you I can share with the world things that have helped us, discouraged us, gave us hope, gave us grief concerning CP. Because of you, Blog... I remain sane. ( I guess that is really still questionable)
To the faithful followers of you, Blog, I also apologize because I am not keeping you posted and up to date on our journey. I will, as I have promised before, attempt to do at least a weekly visit to share, vent, rage, rant, laugh, share and reflect.