Michael, Cats and Finding the Best of Things.
Been a busy couple months. Michael has been to 3 states. Glad he flies well!
We finished the current Utah study Michael was in and are now prepared to begin the next. Working in the hotel between study days was interesting. I pretty much had to make sure I took the boy out and walk and walk and walk him so he would be semi quiet as I tried to work. A hahahahaha.
Hotel after long walk
The new study frequency will be more often. When the drug comes available visits even more frequent still. SLC may be in our future for living or at least part time. We will return in October. Will be meeting up with Sarah and Josh again.
Michael got to go to Denver on my work trip with my co-worker as his nanny. She worked from hotel with Michael and I went to meetings and then we met up and enjoyed walking Denver. I really like Denver. Everything is easy access. One of the few cities I could see living in. Not that we are going to!
Michael will be starting Head Start in September. He continues with having his 1:1 aid. His IEP meeting was very successful and felt supported by staff, though of course I had to push for what Michael needed. Always a high stress meeting even when prepared.
Meetings with state reps that were asking for input from disabled community on what we needed, as funding will be, not IF, but will be cut. Sigh....... It is really sad when you meet families that made sure they were financially set to start their family, owned their home, careers all set. Then a disabled child with all the bills and needs is born and literally removes every financial and career gain made. The family is basically homeless now and parents divorced not due to lack of love but to keep from full financial ruin. Another, if their support is cut, one parent will have to stop working and they will be in similar situation due to medical costs. People wonder why we have so many disabled babies in our neonatal nurseries that are going to foster care or looking for a forever family. Michael is not nearly as severe as these children are but even with him my expenses are quadrupled what all of my boys together were. I am thankful I am a motivated, responsible adult with a job that allows all the time I need for Michael.
Michael's speech therapist has closed her practise. She was one of two options available and the other option and Michael did not match. The big deciding factor on future is Michael and his need for services that our community here just cannot provide. I had discussed it a couple years ago and was shot down as Steve did not want to leave Roseburg. Now the plan is to see where we want to live to benefit Michael the most.
The cats have paid off greatly! Michael is much more interactive, mobile and on the move. He is more comfortable sleeping on his own though both of the cats sleep near him. I think I must kick them ;) Pip and Michael are a unit. Where one goes the other is sure to follow.
One of Michael's behaviors is he watches videos of himself and then mimics. If he sees himself carrying his bird, he finds the bird and does what is shown in video. If I had recorded him playing with the cat, he will play with the cat in the exact same way.... If I recorded him swimming in his pool.... he swims in his pool with my Iphone in hand.... GULP.... If he sees himself in the bathtub playing, he goes in the bath tub with his IPad... Gulp. The IPad survived once but took a second dunk and still waiting to see. The IPhone did not. Telling your boss you need an urgent rush on a new phone and the why....... and why you will not be on any conference calls today..... and hoping you will be on Monday..... Waterproof case on order as well. Pool drained. Will have to just wait until Donda, my neighbor is swimming in hers and invites us. I won't swim alone with Michael for safety reasons. We did get to swim with Donda today and Michael was in heaven. Of course it was way better than his little pool but the little pool was fun while it lasted.
My office doorway is set up for therapy gear now. Will be clearing out pool table downstairs and turning it into gym. Hang it all from ceiling with padding underneath.
We finished the current Utah study Michael was in and are now prepared to begin the next. Working in the hotel between study days was interesting. I pretty much had to make sure I took the boy out and walk and walk and walk him so he would be semi quiet as I tried to work. A hahahahaha.
Hotel after long walk
The new study frequency will be more often. When the drug comes available visits even more frequent still. SLC may be in our future for living or at least part time. We will return in October. Will be meeting up with Sarah and Josh again.
Michael got to go to Denver on my work trip with my co-worker as his nanny. She worked from hotel with Michael and I went to meetings and then we met up and enjoyed walking Denver. I really like Denver. Everything is easy access. One of the few cities I could see living in. Not that we are going to!
Michael will be starting Head Start in September. He continues with having his 1:1 aid. His IEP meeting was very successful and felt supported by staff, though of course I had to push for what Michael needed. Always a high stress meeting even when prepared.
Meetings with state reps that were asking for input from disabled community on what we needed, as funding will be, not IF, but will be cut. Sigh....... It is really sad when you meet families that made sure they were financially set to start their family, owned their home, careers all set. Then a disabled child with all the bills and needs is born and literally removes every financial and career gain made. The family is basically homeless now and parents divorced not due to lack of love but to keep from full financial ruin. Another, if their support is cut, one parent will have to stop working and they will be in similar situation due to medical costs. People wonder why we have so many disabled babies in our neonatal nurseries that are going to foster care or looking for a forever family. Michael is not nearly as severe as these children are but even with him my expenses are quadrupled what all of my boys together were. I am thankful I am a motivated, responsible adult with a job that allows all the time I need for Michael.
Michael's speech therapist has closed her practise. She was one of two options available and the other option and Michael did not match. The big deciding factor on future is Michael and his need for services that our community here just cannot provide. I had discussed it a couple years ago and was shot down as Steve did not want to leave Roseburg. Now the plan is to see where we want to live to benefit Michael the most.
The cats have paid off greatly! Michael is much more interactive, mobile and on the move. He is more comfortable sleeping on his own though both of the cats sleep near him. I think I must kick them ;) Pip and Michael are a unit. Where one goes the other is sure to follow.
One of Michael's behaviors is he watches videos of himself and then mimics. If he sees himself carrying his bird, he finds the bird and does what is shown in video. If I had recorded him playing with the cat, he will play with the cat in the exact same way.... If I recorded him swimming in his pool.... he swims in his pool with my Iphone in hand.... GULP.... If he sees himself in the bathtub playing, he goes in the bath tub with his IPad... Gulp. The IPad survived once but took a second dunk and still waiting to see. The IPhone did not. Telling your boss you need an urgent rush on a new phone and the why....... and why you will not be on any conference calls today..... and hoping you will be on Monday..... Waterproof case on order as well. Pool drained. Will have to just wait until Donda, my neighbor is swimming in hers and invites us. I won't swim alone with Michael for safety reasons. We did get to swim with Donda today and Michael was in heaven. Of course it was way better than his little pool but the little pool was fun while it lasted.
My office doorway is set up for therapy gear now. Will be clearing out pool table downstairs and turning it into gym. Hang it all from ceiling with padding underneath.
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