Monday, May 28, 2012

Follow up and May meeting - May 16,17

Hello everyone remember me? Yeah yeah yeah I know it has been ages since I have updated but not without a good reason. I won't bore you with them however, I will skip to the reason we are all here. Caleb. Boy have we been learning a lot the last few weeks. I know every post says that and it is still true. This has been such a learning experience for all of us and I don't see that slowing down any time soon.

On May 16th we had a follow up appointment with Caleb's wonderful psychologist Dr. Perez. She wanted to check in on his progress and in on how we are doing as a family. She is pretty amazing. Jon was able to go with us this time and was amazed at how quickly Caleb warmed to her. Right off the bat Caleb has seemed completely at ease with her and very open and receptive to her when she interacts with him. It is amazing to see.

We went over some of the results of some of the ASD  (Autism Spectrum Disorder) testing he did at the begining of the month. Not suprisingly he has very real problems with his attention. The term ADHD was tossed around but not as a base problem rather it was put out there as a symptom of the bigger problem. All of these things can be worked with which is where we are heading. We should have her report of all of his tests, couselings, and interactions as well as her diagnosis and her recommendations for his therapies.

Once we get her report we head back to his pediatricians office to get the referrals for his occupational and speech therapies both of which we are 100% certain he will need. None of these things amount to a huge hinderance in his life but with therapy he will learn to focus and be more efficient. With time he shouldn't even notice these things and neither will we.

She told us that she already saw changes in Caleb just since his diagnosis which is a huge sigh of relief. I don't think she quite expected me to be so proactive about it. I have been though. Insanely so.

June will be a very busy month as far as appointments go. He will see his counselor, his allergist, his pediatrician, and he will start all forms of therapy.

On the seventeenth we went to our second meeting with the Onslow Chapter of the Autism Society of North Carolina. I walked away feeling so very confident and refreshed. I love having a place where we can go and be completely open about what Caleb and our family is going through. There isn't a single judgement nor a single person who looks down on you because all of them are facing the same things. I look forward to it every month.

This months guest speaker was the wonderful Ann Palmer. She is a wonderful woman who has released a series of books about Autism Spectrum Disorders and Aspergers. They cover a menagerie of topics and are honest and real. I encourage any person who wants to learn more about the disorders to get one of her books and read. After sitting around a table with her and the rest of these amazing people we walked away with so much confidence and hope. I will leave you with the link to her website. I encourage you whole heartedly to check it out and see what she has to say. I promise you won't regret it.

This week I also had the pleasure of hearing from a friend I haven't talked to in many months. After telling her about Caleb's diagnosis she said something I think I will always remember. She said "I would tell you I'm sorry but I'm not worried about those boys. They have such beautiful souls".

To a mother who has been getting bogged down with treatments and appointments and medical jargin it meant the world to me. It made me realize that maybe just maybe everyone will see past that term and see the beautiful little boy with the big heart that I get to call my son. He really is an amazing little person. He cares about things so deeply especially with him only being four.

Autism Fact of the Day. Today I want to leave you with a list of prominent people who are on the Autism Spectrum.

Notable people with Aspergers:

  • Henry Bond, writer and photographer[1]
  • Phillipa "Pip" Brown (aka Ladyhawke), indie rock musician[2]
  • Michael Burry, US investment fund manager[3]
  • Lizzy Clark, actress and campaigner[4]
  • Ryan Cleary, LulzSec hacker[5]
  • William Cottrell, student sentenced for fire-bombing SUV dealerships[6]
  • Paddy Considine, actor[7]
  • James Durbin, finalist on the tenth season of American Idol[8]
  • Robert Durst, American real estate developer accused of murder[9]
  • Tim Ellis, Australian magician and author[10]
  • Daryl Hannah, actress[11]
  • Peter Howson, Scottish painter[12]
  • Luke Jackson, author[13]
  • Heather Kuzmich, fashion model and reality show contestant on America's Next Top Model[14]
  • Adrian Lamo, American computer hacker[15]
  • Clay Marzo, American professional surfer[16]
  • Gary McKinnon, computer hacker who broke into high-security military and government sites[17]
  • Les Murray, Australian poet[18]
  • Robert Napper, British murderer[19]
  • Jerry Newport, American author and mathematical savant, basis of the film Mozart and the Whale[20]
  • Craig Nicholls, frontman of the Australian alternative rock band, The Vines[21]
  • Gary Numan, British singer and songwriter[22], although he has not been medically diagnosed.[23]
  • Tim Page, Pulitzer Prize-winning critic and author[24]
  • Dawn Prince-Hughes, Ph.D., primate anthropologist, ethologist, and author[25]
  • Nicky Reilly, failed suicide bomber from Britain[26]
  • John Elder Robison, author of Look Me in the Eye[27]
  • Vernon L. Smith, Nobel Laureate in economics[28]
  • Satoshi Tajiri, creator and designer of Pokémon[29][30]
  • Raymond Thompson, New Zealand scriptwriter and TV producer[31]
  • Liane Holliday Willey, author[32]
  • Travis Meeks, lead singer, guitarist and song writer for acoustic rock band Days of the New[33]
  • Adam Young, multi-instrumentalist, producer and the founder of the electronic project Owl City[34]

  • Go check it out over on wikipedia. Get ready for a wonderful shock! That is about all I have for you this update my lovelies. Until next time

    Marching to a Different Beat,

    One very blessed mother

    Wednesday, May 9, 2012

    Therapy First, Optometry Later

    Hello my lovelies!

    I hope all is well and that the weather has been treating you as well as it has been treating us. While I detest spring with its multitude of pollen, weather changes, and the bugs I am rather fond of its' thunderstorms.

    I should have my butt kicked for taking so long in updating. We switched internet and cable providers. Charter was more than a little awful!

     Caleb has had a very interesting couple of weeks. He had his very first therapy appointment May 1st. It went amazingly well. The therapist we saw worked with all four of us and made sure we had the networking and support tools we needed. Caleb was in pure heaven. She dumped a tub of stickers on the floor and turned him loose with a piece of paper.

    She listened to our concerns and answered our questions. Suprisingly she picked out the one question I was terrified to ask. Was it something I did during my pregnancy or the circumstances of his birth that led us down this path? It is a silly question I know but I had to ask it or it would have driven me crazy.

    The answer was no. She went into some medical studies with us as well. Studies show that people with Autism Spectrum Disorders brains are literally made differently than those without it. Their brains work just as well as most everyone elses but the information takes a different route causing them to seem slow or less intelligent. That simply isn't the case.

    We discussed Calebs options pertaining to medications and his therapies and where we went after this. In the end we made another appointment with her for June just to check in. It is safe to say that we left that appointment feeling a little more secure in our abilities to take care of him the way he needs.

    The very next day Caleb has his very first optometry appointment. Yes, I finally got his crazy eye checked out. Bless his little heart he has been miserable lately with his sinuses and eyes. He was coming to me a few times a day telling me his eyes hurt. I finally strong armed his pediatrician into referring him out to see someone. It was a good thing too. After all was said and done I was told something I already knew. He needs glasses. I snorted and told him to tell me something I didn't already know.

    Caleb has a condition known as Accommodative esotropia. Here is the clinical definition of it.

    "Accommodative esotropia is often seen in patients with moderate amounts of hyperopia. The hyperope, in an attempt to "accommodate" or focus the eyes, converges the eyes as well, as convergence is associated with activation of the accommodation reflex. The over-convergence associated with the extra accommodation required to overcome a hyperopic refractive error can precipitate a loss of binocular control and lead to the development of esotropia."

    I felt so bad for the little man. Bless his little bones though he did so well! Not a single meltdown, bite, hit, scream, or pinch. My dad, Caleb's grandfather, also has the same exact condition. He can use each of his eyes independantly of the other which is kind of cool. He has excellent control over his little eyes. I was torn between feeling bad for him and being proud. When one eye gets tired he can focus the other to take up the slack. Basically what this all boils down to is that he needs glasses. We are starting him off on a pretty tough prescription for them. The optometrist tells me to expect him to be really disoriented for a few days until he gets used to them.

    Caleb has taken it in stride like the little champ he is. I couldn't be prouder of him. Everything is so simple in his little mind.

    So that is the latest with Team P. Next week we see Caleb's psychologist again to finish his referrals and enroll him in EFMP and get the results of the tests he took a couple of weeks ago. We also have a sensory friendly movie to see next week (a fabulous event put on by the local theater in support of our special little people) and our second meeting with the ASNC.

    Tonight I want to leave you with a set of indicators  in children with ASD that happen later on in their development. Just keep in mind that every case is different :)

    Later indicators include:

    • impaired ability to make friends with peers
    • impaired ability to initiate or sustain a conversation with others
    • absence or impairment of imaginative and social play
    • stereotyped, repetitive, or unusual use of language
    • restricted patterns of interest that are abnormal in intensity or focus
    • preoccupation with certain objects or subjects
    • inflexible adherence to specific routines or rituals.
    In the end I say that no one knows a child better than his or her parents or guardians. Only you know when or if something is an issue. Please don't be alarmed if a child close to you exhibits these symptoms the child you know and love is still in there. . they just need a little extra help.

    I LOVE my Caleb just the way he is. He is crazy, funny, smart, loving, kind, protective, and an absolute joy to all of us. He amazes us more every day. Some days I sit back and watch him and I can't help but bow my head and talk with my God.

    "Lord, thank you for this amazing gift. I can't believe that I get to be his mommy"

    Until next time,

    One very blessed mom.