This week has left my quite disgruntled, and feeling like nothing is moving fast enough. For those of you who have been through the adoption process, it's like when you rush and rush to get the paperwork done, and then no one else has that urgency and you are forced to sit and wait for things to happen.
We have been attempting to get a wheelchair for Mason since August. It's not that we don't think he'll ever walk, but he's very heavy, and I can't carry him everywhere anymore. He hates a stroller because he feels all scrunched up, and the joggers force him to lean back, which he is completely uninterested in. He will probably always need a wheelchair for long distances, and it will certainly be useful for school. We switched companies because the first folks we were with were essentially useless. They were rude, gave us no options, and our phone calls went unreturned for up to 1 month. Completely unacceptable. We are now with a company whose rep. has been lovely to deal with. We felt like we had options, that he listened to us, and understood what we wanted. He even got a chair for Mason to try - a chair that we were interested in. So that is progressing, but is probably going to take another month or so to actually get the chair.
We have finally ordered orthotics for Mason. In my opinion it's about time. He wants to be on his feet now, is pulling himself up all the time, and prefers to be in his gait trainer at school. But again, this has been in the works since September! The company that his orthopedic guy faxed the prescription to never called us, even after I left messages. So our PT is also an orthotist and got him all measured. We were supposed to have them within 7-10 days. That was nearly a month ago. I don't think it's anyone's fault, it's just one more thing that is taking longer than we thought.
The PT eval at school was done after repeatedly reminding CDS - "it's in his IEP, you need to make it happen." They didn't want to pay for an initial eval to begin his 1/2 hour of consultation with the school each week. But it did happen. Now, I'm trying to get a hold of the PT to talk to her about the results. It's been 2 weeks, and we still haven't connected. She's on the road a lot and I can't answer my phone between 11:30 and 3. So it isn't really anyone's fault, but it's maddening!
Another frustration - we got a letter from his school stating that they forgot to get consent for psych testing that had already occurred in the fall. Would we please sign consent now. Seriously?!! Would have been nice to know that someone was evaluating my kid, and to have had some say as to who did it, or at least be able to do my own research on their provider. Not happy about this.
And the kicker this week was the eye appointment. When we accepted his referral, Mason had a clearly crossed eye. Although it has certainly improved, it still goes crazy frequently, and at our last appointment we were told that this is what causes him to constantly tilt his head back. We initially took him to a local eye doctor, who told us that he didn't see anything wrong. REALLY?!! When we had his speech evaluated, his speech therapist was very concerned about it and told us to get a second opinion. We went to a pediatric opthamologist who told us that he had "A shaped strabismus" and would need surgery, but wanted to wait until he got a bit more settled here. Time and time again we are asked by providers "what are you doing about his eyes?" He recently had a PT eval at the school he attends, and when my mom picked him up, that was the first question from the PT. We had that appointment this week. I took all morning off from work to drive down there expecting to finally get something set up to take care of this. I expected them to dilate him, because with Mason, I feel like that's the only way to get a good reading on it. They didn't. Instead they wanted him to point to these teeny dots on a flashlight (hello! he doesn't really have great fine motor skills). Then they wanted him to identify these abstract black and white photos of everyday objects. He's a concrete guy. The abstract thing didn't work for him. Lastly, the doc was trying to get him to follow that little pen light. Instead of talking to Mason and asking him to follow the light, he kept flicking this little pig thing around and expecting that to grab his attention. Mason could not have cared less, and I don't blame him. I was most irritated, because I want Mason's providers to actually show an interest in him. And there was none shown. He never spoke to Mason on any sort of level and I felt dismissed. He said that he didn't get a good reading, that he didn't want to do surgery right now, nor did he want to try glasses or patching. He stated that his head tilt looked more to the left today (I have no idea what that meant, and seriously, he was with Mason for like 2 minutes!) So we wait another 6 months before going back.
It's not that I want my child to have surgery, but I do want something to be resolved! He's got enough challenges, so if we can fix something that may affect his fine motor skills, his posture, and adds to his struggle, let's do it already! I'm sick of wating for everything to happen!
I just felt like I did a lot of running around, calling around, and got nothing accomplished at all. So this weekend, I'm forcing Daniel to help me clean the basement. That way I can feel like some progress has been made on something in our lives :)
I promise a happy, picture filled, holiday post soon!