http://www.clickondetroit.com/video/21682168/
Check out this video. It is wonderful to see the great work Nancy Kaufman is doing. If you want more information on the Kaufman Center, I do have her listed under my links.
Thanks Jacqui.
I find my self a bit confused. I started blogging to relate and talk to other people about their childrens struggles with Apraxia. It started as a way to express my feelings, get out my emotions, tell our story and try to help other people. Now I am stumped because I wonder just how honest I can be. I do not blog to put on a show. Can I continue to pour out my emotions about how this feels? Right now it does not feel so good. I don’t feel so positive. I feel sad. Sad because I can not fix this for my son. It breaks my heart into a million pieces to watch him studder and grope for words when he’s really worked up about something. It feels terrible to hold him in my arms while he melts because he understands every word I am saying but I have no idea what he is saying back(and he knows it). Things the average three year old does not even give a second thought about. Wonderful carefree words just slide out of the mouth. For Luke and other children with Apraxia this is the greatest struggle. How frustrating this must feel. I see some changes happening with Luke. I know it is not him, it is his struggle that is changing him. It’s much easier to just tell a friendly face “GO!” then to explain how school was. It’s easier to just scream “NO!” then to tell your sister you want her to please stop because she’s bothering you. I have spent the day replaying in my mind, the little quivering voice who told me last night, ” I talk, but I no talk.” Luke feels no pressure with me, most everyone else equals PRESSURE! Questions require an answer. Answers are hard to come up with. This is a tricky fight. Luke has really come a long way, no doubt about that. But there are still those days and those times that are really rough. He is getting older now, he is understanding so much more. We have a long road ahead of us. I guess sometimes I just want to take off the gloves and get out of the fight.
road. A long hard road. It’s steep and full of bends. Most of the time I can’t see what’s around the corner.
And a lot of times it feels like this…
or this…
The seasons change and I’m still on this road.
Wish there was a sign to let me know how long this road will be.
Eight miles would be fine.
Will I make it up this hill? What will I find on the other side?
Then I stop…
and realize I always end up back on the same street.
And then I realize that road always leads me to the same place…
HOME!
Luke was given this book for his birthday, My Little Red Toolbox. Oh my, it is the coolest book ever! From the outside it looks like maybe a fancy pop up book. However when you open it up, it’s full of surprises!
This book is all hands on and so creative!
So I talked to this person, called that person. Met with this SLP and that one. Looked at this program, then went back to that program. Made a ton of phone calls. Held people off. Worried, questioned, debated in my mind. Thought I had it all figured out, only to wake up and change my mind again. Called more people. Talked to friends. Worried some more. Cried. Thought this is all happening to soon. Got angry because after all it’s just not fair. I wanted Luke to go the same school route my other children went. Finally came to the conclusion, I HAVE TO LET HIM GO, he needs all the help he can get! So I signed my name on the line (IEP) and Luke is off to preschool.
Thoughts were racing through my mind. What if no one understands him? What if he can’t express himself when he is upset and scared? Did I make the right choice? Will he be able to come home and tell me about the things he did while he was gone?
We found a small Thomas back pack. I filled it with a snack and hid Mickey Mouse inside. I told Luke Mickey was going to sneak into school with him so he could learn too! We talked about lots of things. Daddy managed to get the morning off from his new job and off we went. We got to walk him into class and stay for a few minutes, then it was time to leave. Luke was upset. He cried a little bit. I held strong because I knew in my heart this is the best thing for him.
I returned a few hours later to see my little star leading the line with a fireman’s hat on. He peaked around his teacher and saw me standing there. He waved and his face lit up. He said bye to his teacher and new friends. Told the teacher he would be back. Then he proceeded to talk non-stop for the next two hours. In his own way he told me about everything that happened. Fireman came to school, showed kids his clothes, had cheese and crackers and apple juice, played on the toys, went pee-pee in a little toilet, made crafts. My heart was so full. I have never seen him more animated and excited (and so talkative!). He wanted to get his brother and sister right away so he could tell them about his day. Once again I sit here amazed. Luke is not limited by his speech problems. This is who he is and he is not afraid. I’m looking at the mountains, he sees little hills.
You shine like a star my little friend. You bless my life in ways you’ll never understand. You show me we are only limited by ourselves. You are AMAZING!
I’m no Molly home maker but every once in a while I try. Especially when I have sick kids who need to start eating again. This was a fun breakfast. The kids love to help cook. I remember Luke’s very first occupational therapist telling me how great it is just to include him in every day activities. Things like; Pushing a laundry basket, sorting clothes, sweeping with a broom, washing kid friendly dishes, letting him help put away groceries, cooking together. She said another good one is letting him spray and wipe off tables. That takes some muscle to push the towel across the surface. Sounds good to me. Just go ahead and clean the whole house Luke! This is the greatest OT idea yet! Really if you think about it, these activities do use huge amounts of coordination, muscle control, and skill. Fine and gross motor skills. Cooking remains the favorite for Luke.
I did manage to get Luke to eat a couple bites, but he is still really trying to fight off this flu. I’ve had a house full of sick kids all month long. This has been awful. Please say a prayer. I hope this is almost over. I’m ready to rip my hair out!
So sweet, such a family effort. Lily made this Halloween chart for Luke to practice with. She wanted him to be able to say some things about Halloween time. She only got a little mad when Luke decided to color on the witches hat. Luke really has an advantage of having older brother and sister that try to help him with his talking. It makes me smile to watch!
Always looking for an OT moment!
Whoa!
So much suddenly going around here. Exciting things for Luke. Big changes. New adventures. Trying to find some balance myself. One step at a time. One day at a time. Luke always seems to show me the way!
We made through nearly two weeks of sickness. Lily almost ended up in the hospital over the weekend. The doctor said she did have a flu (most likely H1N1, but said they are not allowed to test for it unless the child is hospitalized or has died from it, WHAT?? What kind of sense does that make??). That passed through then she developed a secondary infection of pneumonia. The doctor put her on a strong course of antibiotics and thank goodness that worked. We are all back to good health. I’m just exhausted over the whole ordeal. So today may have not have been an ideal day to end up back out for more school district testing for Luke. But right back to business. Now, have I mentioned before I hate testing? I know it is necessary. I know there is no way around it, but I hate it. When we pulled up to the elementary school Luke says from the back seat, “Too big, too big!” Referring to the enormous size of the school form his little view. I try to handle this whole process as well as I can. Today half way through Luke turned to me and said, ” All done now.” I firmly told him, ” No, we are not done yet. Listen to your teacher. Do what she asks you.” Inside I’m thinking, I know baby, I’m all done with this too. There’s the door. Let’s make a run for it and go get some chocolate milk. You just can’t help it as a mother. I want to cradle him and protect him. I just want to make it all go away and make everything better. But this is not reality. This would not be the best thing for him. I have to fight against my own instincts and push him out a little bit. This is not easy for a mom who enjoys having her children tied to the hip! Anyhow, I just wanted to share what kinds of things they are looking for at a three year old OT assessment. These are all things that we had been working on all along with Luke’s play therapist and OT therapist. Again it just reinforces how important early intervention is. Just to give you an idea of things you can work on if your not already.
It went something like this;
Stacking blocks. Not the big wooden blocks, smaller colored blocks. Up to 12 high.
Coping a pattern with those same blocks. Example; She made a train with blocks. Three on the bottom, one on top. Luke had to look at her pattern and copy exactly how she made hers. She made a wall with blocks, Luke had to copy her wall.
Stringing toys. Not the big stringing toys, small blocks with tiny holes. Luke had to feed a shoe lace through.
Lacing a paper with holes punched in it.
Pre-writing skills; Drawing scribbles, drawing a circle, drawing lines up and down and side to side, trying to draw a square, trying to draw a plus sign.
Buttoning and unbuttoning. Zipping, and unzipping.
Unscrewing a small lid. Screwing it back on. Dumping out the contents and counting the contents up to five.
Folding a piece of paper in half.
Cutting with kids scissors. Using one hand.
