House of Krause

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.

This boy has not had a fun week. The flu hit our family, hard! I am so confused about all of this swine flu/flu stuff.  What I’ve heard is that our regular seasonal flu is not even here yet so 99% of all flues now are the H1N1 variety.  Is this true?  Does this mean we’ve already survived the swine flu??  It all began at Luke’s wonderful 3rd birthday. He was kissed on all day long. Four days later…BAM, he’s sick. Sweet Lily despite all my warnings would not stay away from her sick little brother. I would leave for a minute and come back to her stroking his head. Needless to say, she fell ill.

Now after a week of caring for these two, it finally got me. Paul and Preston are the only two that have escaped, SO FAR.  These children have been very sick.  Thank goodness Preston is a gadget man and ordered a stethoscope on e- bay a few weeks ago. It has come in very handy.  After trips to the doctors office, I’ve been listening for any signs that the lungs are having problems. They did not swab the kids, so I still have no idea what type of flu this is.

Here is my question. I was set on NOT having my kids vaccinated on the swine flu. Now I’m questioning it, because if this was in fact only the seasonal flu, I would seriously hate to see what this H1N1 flu will do.  Any one have any information??  All of the information I hear is so confusing. Will you have your kids vaccinated??

I think we are through the worst of it. The love these two have for each other is really incredible. Not a fun week, but they survived together!

My poor Preston is so set that he is not going to get sick. He has been living outside for a week. He asked if he could stay in the motor home. Not a bad idea Preston!

I’m so proud of your new belt Pres. Your mental disciple and focus is really amazing. You have more self control then I have in my little pinkie.

New belt, yellow with black stripe. You’ll be back to orange in no time!

It’s hard for little ones get that good pincher grasp on crayons for coloring. Someone just showed me this easy trick. Buy the fatter crayons and just snap off the tip. Look, works like a charm.

No matter how simple or how complex you make it, this is an awesome language toy! This is an activity we use at Speech.  Luke got one for his birthday. This is another Lakeshore toy.  It is meant to help children learn to read and rhyme hence the name ‘Rhyme and Read’ but it works great for Apraxia. This activity contains sentence strips and the cutest little figures to fill in the blanks. In the beginning we used it in a simple way by breaking it down to a simple form. Luke would need it scripted for him, one word at a time.

Example; Bee, in, tree/  frog, on, log/ cat, in, hat/ ect.

Now we are adding in all those extra little words. Still scripting most of the time. But Luke can connect 2-3 words on his own. We just spent an hour having fun with this new toy. You can forget the sentence strips and just put together different objects. There are endless combination’s.

I also like pointing to the words to introduce Luke to reading. I am told children with Apraxia often have a hard time rhyming words in school. I figure why not get a head start with it.

Love this activity. Encourages a lot of talking. Seriously!

or maybe two or three!

and there was a goofy too…

Luke had a wonderful day celebrating the big number 3. You know grandma asked me,”How does it feel to have a three year old?” I said, “It feels wonderful! We have so much to celebrate this year.” And indeed we do. What a happy day.

Yes, I made a fool out of myself as Minnie. But it was all worth it. Every time Luke saw me he ran over and gave me a huge hug and said, “Hi Minnie!”

I realized yesterday my days of silly themed parties for my kids are quickly coming to an end. They grow up so fast! I had better soak in every moment I can. This is it. This is the last of my babies. I hope my kids will remember all the fun celebrations we had and all the family and friends who love them.

Grandma spent hours making an awesome Mickey Cake!

“Preston, Lily, let me tell you a secret. I love you guys but the cake is mine!”

Happy 3rd Birthday my sweet son. Can’t wait to see how you will amaze me this year!

THE END

Yesterday I was speechless.  It was a whirl wind of a week. I made another attempt at contacting the school district.  I finally got in touch with some one who was really upset that some how Luke’s paperwork was some how missed. With in two days and about ten phone calls later,  I had two psychologist and a Speech and language pathologist at our house.  I explained to Luke that new teachers were going to come meet him and play with him. He was very excited.  I don’t care how many times people look at and test your son, I never like it! He is my angel and just perfect in every way. That’s the proud mother talking in me.  I know they have to do these things so they can understand the situation, but it’s never easy. I think any mom could relate to that, having your child scrutinized under the microscope. Did I mention I don’t like it? Well, Luke was warm and welcoming as they filed in. The SLP said she would play with him while the school psychologist asked Paul and I all the questions. Luke warmed right up to her and decided he would begin to show her everything in the house. He started pulling toys out of the monster toy cupboard. As we were talking I would look and he would be dragging out one thing out after the next. He gave me the eye as he walked by. He knew he could get away with a huge mess because I was to busy talking. I guess the SLP brought out a little shoe from her bag. Next thing I know Luke is walking past me with all his shoes piled up in his arms. Paul and I are talking to the two psychologist and more and more toys were being coming out. At one point I looked over and Luke was pulling peacock feathers from my floral arrangement in the living room.  I stopped and said to the psychologist, “Excuse me, I need to go see what he is doing.” Of course the SLP had a little peacock feather in her bag. Luke decided to show her his. He was having a grand old time. I could have died when he jumped up on the fireplace and hung them all a full moon while singing, “AH- DO-BE- DO-BE-DO -DA!” They looked at me and said, “What did he say?” Mortified, I blamed Preston and said, “His older brother teaches him terrible things!” Two hours later when the three hundred questions were over the house was a wreck! You could not see the floor.  Luke was in no mood for the psychologists to start her formal testing. He crawled in to his toys cabinet closed it on himself and said, “Bye, bye.” I would have crawled in to if I could fit. He was ready for a nap. The two hours of testing by the SLP had wore him right silly.  Needless to say they are coming back next week and finish their testing.  The good news was that they thought he was doing so well. They could not believe he ever got speech services through regional. I explained to them how hard he has worked and just how far he has come. It makes me feel so good that we were able to find  Megan McCann at Lucid Speech and Language, and learned the Kaufman method! I just wanted to call her and say THANK YOU! Thank you for what you have done for my son!  Early intervention is so critical. It really made me feel even more fired up to encourage other moms to continue to fight for speech therapy services.  I will never understand why a child would qualify for services BECAUSE of a speech disorder,  and never receive any speech therapy. Some thing is very wrong with that??  Anyhow, We will see what will happen with the district.  Last night after I regrouped from the stress of the day, I couldn’t help but sit back and start cracking up. Oh no, my sweet son did not hang those three ladies a BA today, did he??

I ‘m off  to get ready for a very special little three years old birthday tomorrow. Good Night friends!

These are my children. I love them all so, they will never know! They light up my days and give me the strength to carry on. I will always be on their side and stand up for what is right!

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Today was a special day! A day to celebrate just how far we have come. Luke’s play therapist had her final visit. She is such an amazing person. She came in with a birthday cake and she explained to Luke that now is he is going to be three so she won’t be coming anymore because she only works with babies. He’s a BIG BOY now! Luke was proud. We had a wonderful visit and just sat at the kitchen table and talked. We remembered back to her very first visit. She brought in a farm animal set. We tried to help Luke make any sounds. Imitate a cow, pig, horse, anything. For seven months we heard nothing! What a celebration to sit together today and hear all of Luke’s talking. She taught me many things. She empowered me to be an advocate for my son. She taught everyone in the house what a powerful role they have Luke’s life. She was always honest with me. I admire her very much. She has made a difference in so many peoples lives.

I let Lily miss a little school because she really wanted to say good bye. Cyndie always brought Lily things she could do with Luke during the week. Lily is already an awesome teacher!

They say it takes a village to raise a child. I believe it takes two to raise a child with special needs.

A sweet Kiss for a wonderful person!

Cyndie heading out with all those big bags of toys for the last time.

We have accomplished so much… thank you for all you have done!

We will miss you.

If there is one thing I’ve learned in the past year, it is to think like an occupational therapist at every opportunity! There are so many activities you can do right in your own home.  In three days I will be left to my own creativity in regards to Luke’s O.T and play therapy time. I am excited to continue to work with him and have enlisted the help of my sister who is a teacher. I want to share some easy ideas I have learned this past year watching Luke’s wonderful therapists.

We do this activity utilizing the stairs. Luke thinks it’s just fun stuff. His task is to reach down low and grab the blocks, then reach up high and stack them on the stairs. But there’s a catch. See that black disk below his feet. It’s a balancing disk. It has a red ball in the middle that makes it a little more tricky.

Usually after he stacks them all on the stairs, he goes up the stairs to retrieve them. We also use the stairs for many things. Like working on that jumping. Just from the bottom step to the floor (no crazy super man stuff). And of course we are always right there with him.There was a time when we would just practice stairs while holding hands just for balance and coordination. Standing on this balancing disk uses tons of muscles.  I think a couple of pillows under his feet might work well also.

Sorry I have been quiet lately . There is so much going on around the House of Krause. Really I have been at a loss for words. I thought we would be able to squeak by in this rotten economy. Unfortunately, it’s effected us tremendously as I know it has for so many! My stress level has been through the roof. Luke is fast approaching his third birthday. It is bitter sweet. At three he will lose all of his services through our regional center. Including his one on one speech therapy with Megan, his play therapist, and his occupational therapist. This has been Luke’s life for a year and a half now. He waits at the window for his therapist to come. The most devastating loss is of course his time with Megan. I have been heartbroken. He has come so far this past year. I kept thinking what’s going to happen? I had committed myself to just continue on, doing the best I could for him. What else could I do. Just take what I’ve learned so far and just keep trying. But I was scared to death.  I really don’t have a clue what I am doing on my own. Could I accept this responsibility? What if I really blow it, and all this hard work for the past year starts to melt away. Believe me it does happen. There are certain sounds I’ve seen come and go when they are not consistently worked on. I pretty much cried all the way to speech yesterday knowing these were his last couple sessions. I pulled it together to sit through the session and try to retain every bit of his instruction I could. I left the office and continued right back to my tears.  As my mom and I drove home I told her I just wanted one phone call. One person to call with any good news.  When we got home I was rubbing my legs with cortisone cream and taking Benadryl to combat my stress hives. I heard the faint sound of my cell phone ringing. It was my cousin on the line. She asked what I was up to? I said, basically I am a true mess. To make a long story short.  Their family had been planning to take a Disney cruise this summer, and after a serious family meeting they all decided they would cancel their trip and use the money to pay for another six months of speech therapy for Luke. We both sat on the phone balling. There are really no words to express how grateful I am. I feel terrible that three very special little girls will not be boarding that ship. There is a reason children grow up to be givers. There is a reason children grow up to have compassion in their hearts. It’s something that is learned. I pray God will bless this family a hundred folds.  I hope they realize this will not only affect Luke’s life but it will also allow me to continue to share my experiences with you. I am so thankful and grateful beyond words.  Special people, huge hearts!

This little one said, "It's o.k, we'll all go on our Disney cruise when were all rich." One day I know she will realize just how rich we really are, because we have each other!