I just saw that this is post #500! Wow-- that is a lot of cute pictures and a lot of rambling on my part! Thanks for reading!!
Anyway, if you have ever seen Mairead in a pool, you know that she LOVES being in the water. She would be in there from morning until night if she could. There are days when her skin is blue and she is shaking she is so cold, but she just does not want to get out. When she is in the water, she is even happier than usual, and it is so good for her. It builds muscle strength, helps with coordination, and provides the sensory input that she really needs. She talks more (and louder) while in the water, and it really is just her favorite environment. In January, she started swimming lessons with Pool School and they did a great job with her. She is usually very afraid of putting her face in the water, and afraid of 'the deep end.' By the end of the first lesson, she was completely submerging on her own, and a few weeks later, was independently jumping off the side into the deep end. She mostly 'dog-paddles,' still, as the synchronization of her arms and legs is pretty hard. She also still has the left-side weakness, so sometimes she ends up turning herself around when she leads with her right. But, she is getting there, and she loves it!
We had eight weeks of swim lessons and while she had that, I was working on getting her into an aquatic physical therapy program. This was not an easy task! There are not a lot of facilities that offer these programs, and some that do require that the person be at least 4feet, 8 inches tall. Most therapy pools are 4 feet deep, and the person must be able to stand comfortably. Also, it's not easy to get insurance to cover these programs because they are more expensive, and someone has to justify the use of the pool for PT, rather than just writing a scrip for regular PT. Thankfully, Mairead's neurologist wants to help however he can, so he wrote the scrip for APT with no hesitation. I then called every rehab or PT place in the area to see who could accomodate her. Once I had those steps in place, I tackled the insurance company red tape. It took some doing, and some frustration, but finally, she was good to go! Insurance covers the sessions with us paying the $20 co-pay per visit. I can live with that- especially since she has had eight sessions so far and loves it! It is definitely challenging for her and tires her out, but the benefits are myriad. She is going to Northeast Rehab which is in Salem, NH, which is about 20-25 minutes away, depending on traffic.
She has to have a re-evaluation every eight visits to get continued insurance coverage, so we'll just keep hoping it continues to work out. At her recent re-eval (which is on land), an Occupational Therapist was in the room and suggested to our PT that we ask for OT, too. She noticed a few things, including decreased self-regulation, that would warrant OT. Also, the PT wants to add on-land PT to help Mairead with things like stairs, pedaling a bike, catching a ball, balance, etc. They also recommended seeing an opthamologist because they are thinking she has some depth-perception issues. Her neurologist and I have discussed this in the past but held off because her language was not really strong enough for he rot understand and answer the questions during an opthamological exam. Now, though, we might be ready for that. I love the idea of Mairead getting more help, it's hard to think about how we will fit in all of these appointments since she does not get out of school until 3:30. I don't want to exhaust her; three appointments each week would be a lot for all of us. So, we'll see what they recommend and talk about the best way to make things work.
When we are at APT, there are a number of other patients in the pool as well, all of whom are facing disabilities more comprehensive than Mairead. Several of the other kids and young adults are in wheelchairs, and a few are also non-verbal. The families have all been very kind and very friendly, and everyone seems so positive. It's amazing to watch-- we get frustrated with Mairead's situation and wish that things were easier for her. But then I see these kids and parents who are facing such a hard road, and I am thankful for how lucky we are and how well Mairead has fared.
I was saying to Dave the other day that I sometimes feel like Mairead is living in two worlds-- one is the world of regular education, fully abled sports, traditional school and social events, etc. The other is the world of PT, OT, APT, Speech, IEPs, Neurology, etc. She is super smart and does so well academically, but there are many things in the neuro-typical world that are very hard for her, and that cause her to struggle and have anxiety. She is not as independent as most five year olds, and we do have concerns about her safety since she is not really aware of things like getting lost, or what she should do if that happened. If she didn't have a teacher to guide her, she couldn't even navigate her own school building. She can't ride a bike or climb a ladder like other kids, and she still does not really have 'back and forth' conversations with peers. However, she benefits so much from the typical models in her class, and just loves Kindergarten so much. She is thriving there, despite it being hard for her. But, the other world is part of her life and likely always will be. She needs these services to help her learn things that would come naturally to others, or to develop coping mechanisms for things that still elude her. It's sometimes hard to find places where she truly belongs, if that makes sense. For example, she has the opportunity to go to summer school through the public school system, but we are not going to send her. In that environment, she would actually be the model, not the one learning from others. We think she would have more to gain by being home with us and navigating social situations, day trips, etc. Plus, I miss her during the school day so I am looking forward to having her home with us!
This post about swimming turned into quite a long one, so I appreciate it if you have read all of this!