Wednesday, January 14, 2009

Normal? Finding a new one.

Hello all. This post is a break in all the passionate talk of vaccines and such. I am so proud of my husband for being honest and fearless in his quest to educate. I have no doubt that someday he will be public speaking on this matter and I will be right behind him, cheering him on.


On to other things -

We are slowly finding a new normal as me as a SAHM. (I prefer CEO of the house. Jay calls himself the CFO.) I truly am enjoying this time and feel like my working outside the home days are long gone. I still love hearing about all the goings on but, don't really miss the work. I miss the people and the outlet and some of the project work but now more than ever I am needed much more at home and am loving spending this time with my boys.

I think the two week break over Christmas took Carson over the edge. We have had a VERY hard time getting back on schedule with sleeping. He has been VERY crabby and that has been tough. We are dealing with some new issues that I wrote about in another post but am holding off on publishing it as, I was very down when I wrote it and don't want anyone to worry about him nor I. Maybe when this time passes I will share it as a look back. I do know this time will pass and we are working hard on finding some resources to help.

In the mean time, I have been becoming very domestic. I actually cook a lot and pack Jay lunches. I am enjoying the housework as I feel a great need for it to be clean and organized. My only frustration is that it does not seem to stay that way for very long. I am working on being okay with that and going with the flow but I feel stress when the house is a mess and things are not tidy. I guess I have my issues too.

Jay and I are getting back into a good exercise routine. As with most people we slacked for the holiday and are now trying again. Problem is - the gym is packed and we are having to go at certain times just to get on the equipment we would like.

I am working on planning a family vacation. Just a few days ago, I would have told you that it was the last thing I wanted to deal with but..... we need it...the kids need it and....we want to make memories. We don't have the specifics yet but we will be going to Florida to see Jay's dad and step-mom and then taking a few days to visit Mickey.

When we first started talking about going I did not even bring up the Disney part as we are trying to be very disciplined with money and did not want to put pressure on Jay. The other night we were talking and I casually mentioned that if we go during Carson's bday that he would get into the park for free. Jay looked at me and said - well yeah, I figured we would go for a few days. I literally started crying. I know I sound like an idiot but Disney truly is to me the happiest place on earth and I feel the magic when I am there.

Two years ago, shortly after hearing the diagnosis we did not want to hear and having to deal with that....Jay and I looked at one another and said....lets go..... we left for Disney two weeks later. I was seven months pregnant with Fin and got the okay from my Doc. We needed that time with Carson and to be away. We felt the magic and just had fun. It was amazing. It was not our first time there with Carson. We have been blessed to have taken him every year since he was born but this is the first time Carson really started to know what was going on. We have great memories to that time with Carson. The only negative was being so pregnant but I can tell you that I now know where every single bathroom is at all the parks.

(Many people don't understand taking small children to Disney. I will be totally honest with you and say that until he was almost three (the trip below) he did not really know what was going on or care. I know that but - I DID. He still enjoyed the magic and the shows and such. I don't believe in not doing things with your kids just because they might not remember. I remember and I always will. )

The 2007 trip right before Fin's arrival. This sign was outside Animal Kingdom. I loved it and had Jay take the pic. If you can't see it, it says - Where dreams come true! In side my heart all the dreams I had for my child seemed lightyears away!

The magic kingdom. This was one of the best days of our trip!

Buzz Lightyear attraction. Carson's favorite ride. It would be almost a year and a half later before he would really enjoy the movie. I can't wait to go back for him to ride this ride again now that he loves the movie.

These very special (first one) hat resides in Carson's room.

Meeing Annie of the Little Einsteins - the love of his life at the time.

Hi Little Fin - We would meet him exactly two months later. (Holy cow, his pregnancy was hard on me!)

We have been lucky that we have gone every year and this year, I did not think we could make it work. We will see. We still don't have all the specifics yet but hopefully it will all work out. IF not, I am okay too. I don't want to go at the expense of financial peace either.

Disney is so important to me because I have very vivid memories going with my family as a child. We went every single year. My grandparents were snowbirds and we would drive down to Florida and then one day go to the Magic Kingdom. Walking into that park with my own kids and seeing the castle always brings tears to my eyes. To me it is magical there and truly the happiest place in the world for children.

During the trip I mentioned earlier, I learned about the guest assistance pass that is available to families with a disability. As much as I hate to think about it - Autism is recognized by the American Disability Act as disability. So, we get to use this pass and not wait in line. Disney also has GFCF food. So, as you can see it is the perfect place to take our family. We don't have to worry about Carson's diet and we can enjoy the attractions without putting Carson though too much. BELIEVE me - I would much rather not be able to use this pass and wait like everyone else. If you don't think this is fair - just come live our life for the other 51 weeks a year and tell me just how unfair it is we don't have to wait in line. I can assure you the stress and worry over his life and future do not compare to the hour wait in line to ride Dumbo. If we had to wait, we would not be able to go. Carson would not be able to handle it.

Fin is just killing us with all his conversation. Really, I don't think it is "normal". He talks more than any 21mo. old child I have ever met. It is crazy. I know we have a different perspective but come on..... I have conversations with him. He understands most everything and will give you up to four word sentences with ease. The joy in this is tremendous. We missed out on all this and Jay and I look at one another everyday with amazement. I can tell you that typical childhood development is a miracle and grossly under appreciated my many.

As for my other projects - I am looking into various grad school programs and trying to figure out a good fit for my future. I like working and would love to find a new path that I feel passion about and do something that I love. I doubt that it will ever be full time again, at least until the kids are in school all day but I am excited about where life might take me. I do know that I want to use my experience with Autism and other Autism families to lead me and think I would have a great sense of fulfillment in doing something with it. Right now I am leaning towards getting my Masters in Counseling (child/family). I have already looked in to the Phd program and it is very intimidating but will take it one step at a time. In my experience there is a real need for therapist that specialize in the marital dynamic of having a special needs child. For one - the divorce rate for parents with children on the spectrum is 86%. There is a need for the parents to find some help. Not that our marriage is perfect but I feel like our experience and insight might be useful in that arena.

Jay too is looking at going back to school. Oakland has an Autism certification program. He would like to explore that and utilize it along with his already complete Masters in Training and Development. We both feel that God has given this to us for a reason and we should try to educate, motivate and support the Autism community as much as we can. After all, autism spectrum disorders is a rising epidemic with 1 out of every 150 children being diagnosed per year. That is a lot kids (too many to not notice) and families that need a strong support community.

As we figure this all out we continue to plug away. Carson's waiver is in the works and the behaviorist and case worker were over yesterday setting up his plan. I can't wait for all of his services to begin. We already have plans for Carson to attend (along with me) a weekly equine therapy camp this summer and he will soon be receiving additional OT, PT and speech. I can't tell you enough how wonderful everyone we have worked with has been. Social workers are amazing people and deserve much more recognition....and pay!

Take care and thanks for reading. Love to you all - Em

1 comment:

Anonymous said...

So many good and positive notes. I pray all your dreams come true - including Disney World.