Tuesday, October 14, 2014
All I can say is where did the time go.I know, I know, it is probably in the 5 day a week of commuting to Tacoma and Puyullup for physical therapy and either dropping or picking from school. Tuesdays are really the only day I have more time at home. If Luke sleeps in or naps I can actually wash the dishes. Today Abe was crying and screaming a lot not wanting to go to school so it woke Luke up. I feel bad for Abe because I have to wake him up between 630-645am since bus comes at 725 even though school starts at 835. He has had a lot of resistance towards wanting to go to school even on the days I drop him off. This past month since Abe left the hospital have not been easy. I have made countless phone calls, one in person meeting, in personal conversations and emails in an effort to get him the one on one paraeducator as recommended by the whole rehabilitation team at Seattle Children's which includes a doctor, PT, OT, recreational therapist, neuro physiologist and an educator. I am beyond momma bear status on this. Not to mention he barely got teacher for vision impaired services as I was picking up last week ONLY because I sent an email reminding the whole team 7 minutes in the IEP. Speech was missed for several weeks as well because no one gave her Abe's schedule. I saw her one day as I was bringing Abe or picking him up and she had no idea about his outpatient schedule. She kept coming on a day and time when he had appointments. That's not her fault but if someone had gave her his schedule this could have been avoided. Moral of the story the beginning of every school year I am requesting a meeting with the whole team. Another thing that is completely unacceptable but we are all human right is Abe's lunch comes home almost completely untouched, plus his water bottle. Oh the real kicker is he was not taken to the toilet or diaper change and he was at school 830-130pm that day. A basic need not being met because they are under staffed. I fully support employees getting breaks and lunch. I worked several years as a nurse and if you don't get a break or eat you are cranky and not as productive. Abe fell out of Rifton chair as well. I really don't want to file for a law suit or pull him out of school but unless more support is provided I might not have a choice. Not offering a child liquids or bathroom is not acceptable. Also by law anything in an IEP must be followed or legal action will be taken no IFS ANDs or BUTS. I also have spent countless hours advocating for what needs to be done to get ABA therapy back. Abe had the ADOS II testing done already but needs Vinland for the ABA pilot program for retired military families. Retirement for us meant we lost ECHO benefits for Abe including ABA service and respite care. I am working figuring out respite either through DDA and DSHS. Our former respite provider has agreed to be a "babysitter" we just need to pay her hourly. She has been with Abe since November 2010 and he seemed to have some adjustment issues not having her around. She can't come and watch the boys 40 hours a month but is willing to occasionally babysit them but it's not thru any programs just straight up babysitting. I am thankful she is willing to do this since Abe has missed her a lot. He also lost ABA therapy until all the testing and reports are done and Tricare approves it and the company has availability. Also figuring out DSHS benefits. I have a rough time with Paratransit Services but I think I finally got the it all figured out. Fuel card is provided for his appointments which is a huge relief for us. Just hope the fees for the Tacoma Narrows Bridge won't be a problem. The bridge fees are $90.00 a month for one year plus the cost of fuel and wear and tear on our van. Some days it just depends on who answers the call. The former teacher quit after the first week and Abe has a new teacher now. The new teacher seems to care about the kids and an IEP meeting was set up for next week. I started asking for one in August but I guess momma bear wasn't assertive enough yet. Abe getting stronger but had a cold a few weeks ago that set him back a little. Some positive changes I have observed post surgery, his ankles and feet are much more relaxed so getting AFOs and shoes on have been a lot easier. He is still very weak in sitting balance but is able to pull to a stand and hold onto a table or a wheelchair ramp independently. His legs still cross over but not as much. He is continuing to improve and get stronger but it is definitely a process. This momma feels more like a case manager and a taxi cab driver lately.
Posted by Karen Goddard