Friday, November 27, 2015

New glasses

Andy's new glasses are working out so far. He hasn't tried to bend them, and hasn't knocked a lens out. I think he looks cute in them. He is playing with a bead toy here on Thanksgiving. I don't notice his eyes crossing inward when he has them on either, which is great. He gets frustrated if his eyes cross repeatedly, and he will shake his head to try to get his eyes to go back. The glasses seem to help though. They are mostly for his astigmatism though, so things won't look distorted to him. 

Friday, November 20, 2015

Circles of communication / PLAY project

We have a child psychologist that comes over once a month to observe Andy and give me suggestions on how to interact with him. He has told me about circles of communication. This is when Andy is doing something and I get his attention and then he interacts with me. He will then react to me, often by doing the same action again. Usually, one of our circles of communication is when Andy starts making noises by tapping his hand or fist on his mouth and then he looks at me. I then make the noises by tapping  my hand over my mouth and then when I stop he repeats this again. It's like I'm imitating him and then he repeats the action. He really enjoys this and we now will carry on this behavior for 10 to 15 minutes. At first, the circles of communication would only happen once or twice. Over time, Andy is seeking out more interaction with me, and is wanting to do it more often. We are interacting with each other every day for longer periods of time each day. This will ultimately help Andy to start learning. 

He first has to be comfortable interacting with me and regulating himself, so that he feels OK with his body and in his space. Once our interactions can be stretched out into longer periods of time, we might be more successful in helping him to start learning things. His needs have to be met first on much lower developmental levels before he can begin to learn academic things. These small steps are slowly building into larger interactions, and progress can be seen with him wanting to interact with us more often.

Wednesday, November 18, 2015

Our respite care worker quit

On Tuesday, I was patiently waiting for the respite care worker to arrive. She comes three times a week to watch Andy for four hours.  Once she was 30 minutes late, I texted her asking, "Are you coming today?" Then she replied, "Sorry, they didn't tell you? I quit on Friday." Nooooooo!  She says it wasn't about our family, she loved caring for Andy, it was about too many demands from the agency and not enough money. 

I am very thankful for the three months that we had her services. We really enjoyed all the time we got to spend with our daughter. I really enjoyed all the times I got to go to dinner with her, just the two of us, or sometimes my husband would join us too. I loved the sewing classes I got to attend with her, and the rollerskating nights, and the movie nights. It was good while it lasted. But just as I had feared, all good things must come to an end. Until we get a new worker...sigh.

Saturday, November 14, 2015

Had to return the Miraflex glasses

We had to return the Miraflex glasses because the lens kept popping out of the frames. Andy would fidget with the glasses and push the lens right out of the frame, and I am worried that he will choke on the lens if not being watched every minute. We are going to try some flexible wireframes. These might be better because the lens is held into the frame tightly with a screw.

We got outside today to enjoy some warmer weather. Andy's sister took him for a ride in the Barbie Jeep. He really enjoys it. 

Tuesday, November 10, 2015

Son's speech therapist refuses to recommend music therapy for Andy

The county that we live in has agreed to pay for music therapy for my son, but first his school speech therapist must write a letter stating that it would be beneficial for Andy. I asked nicely, and she refused. It was a bit disappointing. This is how the email went:

Dear Speech therapist,

The county has told me that they would pay for music therapy for Andy, if you feel that he would benefit from music therapy. We would need a letter from you stating that he would benefit and that he has a deficit in one or more of the three areas of receptive, expressive or pragmatic language skills. Please let me know your thoughts. 

Thank you!

She prepared a letter that did NOT recommend speech therapy for Andy, however, it stated his deficits and that "Andy responds well to music". She clearly was not stating that Andy would benefit from music therapy in any way. I submitted the letter anyway. When it was rejected by the county, I sent this:

Hello Speech therapist,

The county would like to know if you feel music therapy would benefit Andy. They told me the letter was rejected because it doesn't state how music therapy would benefit Andy. Could you elaborate on this in your letter so we can try one more time? 



I got this:

I clarified this with the special ed director and was told that the school district is unable to directly recommend outside therapies, since it can make them liable to pay for them.  I have CC'd the special ed director on this email in case there is anything else I can do from my position.  I am so sorry- I tried to state in my letter that Andy loves music.  

The special ed director further said:

Good morning,

It is difficult for school staff to recommend outside therapy if they do not see a need for it within the school environment.  Staff can write a letter based on observations they see within the classroom and/or therapy time. It sounds like the speech therapist wrote the appropriate letter based on her observation within her therapy sessions.  If you have any other questions please let me know.

I really still do not know whether it is the therapists' professional opinion that music therapy would benefit Andy or not, because she refuses to answer!Basically so they won't be held liable for payment. Really??  How frustrating!

Here are some parts of the letter: 

Andy presents with a significant expressive, receptive and pragmatic language disorder. His current eligibility for services is SXI...Andy responds well to music...

None of which, helped him to get the music therapy being offered to him by the county. Again, the school continues to create roadblocks for my son. Sigh

Monday, November 9, 2015

Andy is unable to self feed

I don't think I've updated on the occupational/fine motor skills in a while. I usually just focus on Andy's standing and taking steps. Andy cannot feed himself and finds it very difficult to put food in his mouth. Although, he can put toys in his mouth. He seems to overshoot with a fork, or drops it before it meets his mouth. He also drinks only from a cup with a straw,  but I have to hold it for him. He will gesture towards the cup, but he will not grasp it to pick it up. If I show him hand over hand, sometimes, not always, he will hold he cup and drink it. Then he will drop it down to the floor. 
It would be amazing to see him reach out and grab the cup himself, and place it back down. I have to slowly show him that he must do this in his own, even when he's very frustrated. He does it with toys all the time I just don't think he had the confidence to do it with food. He is also fascinated with just smashing the food in his hands, so it doesn't make it to his mouth. He doesn't seem to understand a whole lot, so we will continue to work on having him drop objects into containers in hopes that he will soon drop food into his mouth. 

Wednesday, November 4, 2015

Andy is standing often with my help

I try to have Andy stand and take steps as much as I can. Even going to get a drink of water I had Andy walking in front of me. He likes it best for me to be behind him and not in front. He doesn't like me to hold his hands so I hold his elbows or upper arms. I am standing behind him here in this shot. 
If there is a chance for him to be on his feet and not playing on the floor, I have been very motivated to do it. I can tell he is benefitting from it and stands stronger each day. His appetite is also very high. He is quite hungry at home and at school. He is growing and getting heavier. It might also be because of all the activity he is doing now, instead of just lying on the floor too much. 

Saturday, October 31, 2015

Miraflex glasses

Andy is wearing his new glasses all the time now. His misshapen eyes (astigmatism) are causing him to see things as being stretched out. The doctor says the glasses will help him to see less blurry and not see images in a distorted way. We got glasses that will not break easily, because Andy likes to take glasses and bend them. Any object he can get his hands on, he tries to squeeze and twist it, not really meaning to break it. He probably doesn't understand what he is doing really.

These glasses are called Miraflex and  they are a flexible plastic type of material. He does not try to remove them. There is a strap that goes around the back of his head to keep them on. He seems to be able to put toys into containers better now, and is taking steps slightly better too.

They will also help him to see far away.

Monday, October 26, 2015

Frankenmuth was tough with a wheelchair

We went to Frankenmuth,MI on a Saturday, which was probably the busiest day of the week. The crowds were unbelievable. Frankenmuth is a little tourist town with an all year long Christmas store and little cheese shops, fudge shops, toy shops, and shops to find unique things. Many shops had only stairs to enter. I mostly went into the ones that were wheelchair accessible. The Kite Craft Frankenmuth Toy Company was very helpful to us. They held the door open as we came and went, and had many unique and appropriate toys for Andy. He loved these Sesame Street bean bag toys that I had never seen before. I kept picking them up and chewing on them, so I had to buy them. He enjoyed them so much. The tag says 2015 Sesame, so they must be a new item. I would like to get more.

I will be returning for some more Christmas shopping, but next time it will be during the week when it is less busy. I'd also like to go back with just my daughter to see the lights at night. I loved the fresh fudge and toffee it was such a nice treat. Andy was also excited to watch the people walking by.

Sunday, October 18, 2015

Trying to enjoy warm days before winter weather

Anytime it is warm we jump on the chance to do something outside. Andy loves riding in the Barbie Jeep with his sister. He also likes the bin full of corn at the apple orchard/cider mill. 

Some days the weather can be at 70 degrees F, and the next day can be a chilly 39 degrees F. Now that it is mid-October it will soon remain cold. Yesterday, we had big snowflakes coming down for ten minutes on October 17. 

We also got to Cedar Point Amusement park in Ohio too. Andy loves it there. I bring his noise canceling headphones for when we are near the loud roller coasters. He loves the camp snoopy area  for the peanuts 500 cars. The lines were super short because the Ohio kids were back in school when we went. We got a passport hat would allow us to get scheduled times to come back to the rides, but we didn't have to use it. You can get it at guest relations. 

It's nice to see Andy having so much fun despite his disabilities.