Tuesday, April 19, 2011
I am very familiar with the IEP process, since I am a special educator. I am also very familiar with inclusion, since this is something that I promote and support in my work. But I was having the hardest time navigating the homebound services and so was the school staff. Parker is really the first kid that they have had with this situation, so we were all learning together. But note that I am purposely using the word “together”…there is something very special and empowering when people come together and especially when it is for a child who will be learning and growing and contributing to our community.
So after we shared who Parker is and what he is experiencing medically, we then asked about his education options. We were so impressed when one of the people from homebound said, “Well I think we need to think outside of the box here.” She was spectacular! She even called the county office to get permission to do what we as a team thought would be best for him. She here is what will happen. From now until the end of the school year, he will try an altered schedule. He is going stay home on Wednesdays so that he has a day to re-coop and rest. On Tuesdays, after school, the homebound program is going to pay one of his teachers (who was gracious to volunteer) to come to our house to bring missed work and review lessons that he may need help with. And Parker absolutely adores the teacher who will be doing this!
Then the team discussed starting an eval for alternative and augmentative technology and look at a possible “other health impaired” classification for his IEP for next year. So we are starting this process in hopes to get it done prior to the start of next school year. The team will bring various forms of technology out to test him and let him try out the technology to determine what will be the easiest and most effective in assisting him with “writing”. Some days he can barely hold a pen/pencil and to use the pressure it takes to write is very painful and exhausting. His IEP is a work in progress. We wrote up the homebound dual enrollment and all of his needed supports and accommodations/modifications. We are very very thankful to Parker’s team!
Friday, April 15, 2011
So we are so thrilled because Parker made school all week…So why was Parker so grumpy when he came home? I was cheering and encouraging, but something felt off. At first I just thought he was exhausted or in pain, but no…it’s cause of the Lunch Lady.
Ready for this…because I must vent a moment…today, when Parker went to lunch and tried to sit with his friends, like he ALWAYS does, the lunch lady told him that he couldn’t sit there. Then, she told him he had to sit at the “handicapped table” and she made him move.
So I must interject here…it took us weeks at the beginning of the year to convince him to even use his wheel chair at school; so he could last longer and not get so tired. This all stems from when he was in elementary school because he was made fun of. The kids were calling him the “idiot with arthritis” and “don’t get too close to him cause you will be an idiot too”. So he didn’t want to stand out as different. But it was critical that he used his chair to increase his stamina, plus he was falling a lot.
So back to present time…his friend reluctantly pushed him over to the “handicapped table” where no one was seated and he was very upset. He asked if he could please go back and sit with his friends and she said “no you need to sit here by yourself.” And to make matters worse, the lunch lady then told kids that if they went and sat with him, then they would get a ticket (tickets will be part of a raffle later in the year). Parker was totally humiliated and kids he didn’t even know sat with him to get a “ticket”. So what kind of message is this sending our youth?
We are so proud that Parker didn’t lose it at school. We are even prouder that he has more empathy and understanding than most. And we are incredible proud that he went to school all week. Why didn’t he get a “ticket” for that?!?!?!
Sunday, April 10, 2011
Where would we be without our JA friends? They truly understand how difficult our days have been and have periodically checked in with us to see how things are going. We were showered with their support this week, as we endured our wait for medical results. We are so appreciative. We had a hard week not only with Parker, but
was also really sick. I too was undergoing many medical tests; and our dear dear friend has been very sick and is in intensive care. So for those of you who called, sent messages, and the very special person who sent a very lovely card…we thank you all from the bottom of our hearts. Logan
We are happy to report that Parker does not have JDM, however, he does have vasculitis in conjunction with his systemic JA. To learn more about this condition, here is a website that explains it: http://www.webmd.com/rheumatoid-arthritis/guide/vasculitis-treatment
We also found out why his jaw is giving him trouble. There is little space nor cartilage between the joints on both sides of his jaw. His rheumy wants to keep a close eye on that; and we are going to an ortho for a special splint night guard. We also found out that many of Parker’s blood levels are still off and he is quite weak. Thankfully, I found one pediatric physical therapist that takes our health insurance and so we are now on a wait list to resume PT, 2 to 3 times a week.
As many of you know, we have had some difficulty around approvals with our health insurance. This week our primary doctor (I just LOVE her!), recommended that we call our insurance and ask for a case manager because she believes he would qualify since he has a “severe disease that is difficult to manage”. She even gave us the direct phone number. Who knew we could do this!? I will let you know how that goes…
As for me, we found out that I don’t have lupus (both my primary and my allergist had this concern). We are very thankful for this news. I do have another small goiter on my thyroid, but we just need to continue to monitor it. I did find out that I have a severe vitamin D deficiency (already working on this) and….ready for this…significant arthritis in both shoulders and hips with the start of osteoporosis. Parker says we are still two peas in a pod (he has always said this about our allergies and asthma)…but I know that my pain has been nowhere near the level of his.
, he is doing much better. Still coughing a bit, along with Parker, but we think both boys are finally on the up-side of this infection. Thanks again to our aggressive primary doctor who quickly started treatment. And as for Michael, he is taking care of all of us…and I love him dearly for that. Logan
We have successfully completed Parker’s second round of his Actemra infusion. We truly think it is starting to work. We hear joy in Parker’s voice again and although he still is requiring tons of sleep, he has more alertness when he is awake. His swelling also seems to be going down and he appears to be moving smoother. He is still in pain, but we are so incredibly hopeful that the Actemra is doing its job. We will continue to go back every 2 weeks for infusions. We think we are beginning to see light at the end of that tunnel; and as our friend WilmaSue has joked, we hope it’s not just a kid down there waving a glow stick. But if it is, maybe some day soon Parker can join that kid!
|Parker is the Spring 2011 Walk Honoree for Tampa! To Donate visit:|