Tuesday, November 26, 2013

A Little Overdue

It's Been Awhile 

I feel bad that it has been awhile since I've "blogged" or given an update however I have a lot of news. Most of it pretty positive! 

More Talking 

 I am so happy to report that Colton now says "Mama" and "Dada" plus a few more things. Cutting my hours down to just weekends and getting more active therapy has really been working. I've seen so much positive changes in the last month alone and it makes me so happy. To hear my son say "Mama" made me the happiest woman in the world. I truly wanted to throw a parade. Something so many take for granted really made my day. In fact it has been the best thing so far in my life other than the day he was born. It is also awesome to note that we now have a speech therapist on board and she seems to really understand our son well. This makes me happy, we have been so blessed to have every therapist be a wonderful one. 

Neurology Appointment 

 We still are on a waiting list for this but it looks like it won't be much longer. Looking like sometime in late January and while I am nervous about it I would like to try and stay positive and hope that maybe there could be a few answers to things we have been questioning albeit even if they aren't we can at least rule some things out. 

Case Manager For Insurance 

 After the guidance from an amazing woman who works for WAAA (which I have mentioned previously) I demanded that we get assigned a case manager for our son and after much "badgering" we finally have one. She seems to really want to find out everything she can for our son and us. I'm so blessed to continually have so many wonderful and well informed people come into my life. Although we are surely going to have issues with our insurance we at least have found someone willing to go the extra mile for us and for that I am grateful. 

Some Bitter Things 

As with everything in life with the good comes the bad. We are finding out more and more how much Colton is struggling with fine motor skills. It is causing him a lot of frustration which results in more violent meltdown type tantrums. Potty training still seems to be something for the much distant future although we will continue to encourage him but not push it too much. I think that Colton is starting to realize that he can't do several things other children his age can and that hurts me. I feel so much for my child and watching him struggle is hard. I can see how much he wants to ride a trike, to open a door, to color and throw balls like other children his age. He truly is my hero though, he always tries and when he fails even though he has meltdowns often he continues to push himself. Just this last month he began to "scoop and pour", which is something he was really having a hard time with. He has so much drive and motivation, I am such a proud Mama. 

Bright Future 

Colton is making so much progress and I truly believe he will accomplish a lot in his life. He is so brilliant and to live in his world must be incredible. I'm just happy he lets me in it sometimes. The way he sees the world and the patterns he creates are so fascinating and beautiful. I will just continue to advocate for him and be the best I can be for him. I know some who see me in everyday life may see a very tired woman and in truth I am but don't think for a second I am not always trying to be a "Super Mom", I'm just also human. Colton makes everyday worth living, every battle worth fighting. No one makes me smile like he does and I have no doubt he will bring many people happiness. I am so proud of the progress he is making and will continue to make. Thank you all as always for reading this and your continued support. 

Tuesday, November 5, 2013

Today Was A Good Day

Today Was A Great Day 


The Sweet

 Well to be fair things have been looking up for at least a week now. Starting last Friday one of Colton's therapists came to his co-op preschool to observe him and he did really great and was responding well.I was so proud of how hard he was working to try new things. He has been making tremendous progress in a few areas especially in speech. He now says "Mama", "Dada", "Papa", "Baby" and "Nona/Nana". This is huge for us. I'm also happy to report that we are finally getting a speech therapist for him and I feel the timing couldn't be better. Our son wants to talk, he wants to work hard. I feel so lucky. Of course with the sweet we have the bitter.

The Bitter 

 While we have been seeing a lot of improvement in some areas especially speech we have encountered some new and worsening behavior. Mainly with Colton's tendency to self harm and cause harm to other people and animals. I'm not sure if this is due to the frustration of still not having the right words to be able to communicate wants/need/emotions etc. I'm sure they play a part in it. It's really hard to kind of have to admit that your child has a mean streak, a tendency for violent behavior. I'm desiring a behavioral therapist more now than ever. The other issues have been with our ongoing battle against our insurance company. 

Many of you who have been reading along probably remember how early on in this blog I explained that our insurance company does not cover anything related to autism. Yeah,nothing. Our son is only 2 1/2 and even trying to get "developmental delay" covered is a struggle. I have recently hooked up with WAAA which stands for Washington Autism Alliance And Advocacy. They have already felt like a godsend. I no longer feel so alone in this fight especially after learning from them that our insurance is violating federal laws by doing this. This only adds to my need to triumph over this problem not only for my son but for the children struggling presenting and the children of the future. Part of this battle for me will have to be in taking on my husband and I's work union. Turns out that even though it's a huge union no one has ever stepped up to the bargaining table to end this problem. It's truly hard to believe that there are no other people belonging to our same union that have not encountered this problem. Nevertheless I will not stop until it's resolved,whatever it takes I will do it. After all it has to do with my child and his medical needs! 

More Sweet 

I'd like to close with some more happy news because ending on a positive note is often best. I have recently starting getting more into my local autism community,I have already met so many incredibly strong and smart women who have filled me with comfort,hope and positive feelings. I highly recommend any of you out there reading this who may have only recently had their child diagnosed on the spectrum or have not yet actively sought out their local community/support groups to please do. The best resource and support we have is each other and I promise you while not everyone you will always meet will be like you,you will make some great connections and learn something new and helpful. I'm more excited now than ever to become as involved as I can be especially since it won't be long before Colton will have to get into the special education public school system. Thanks as always for reading and for your support! 

P.s. For more info about WAAA visit http://www.washingtonautismadvocacy.org/updates/