Expectations

   After having a conversation about my littles with a wonderful woman we met on vacation I have come to realize that others have high expectations on Jacob.  She inquired about my two oldest ages and was in complete shock to find out not only were they 4 years apart in age that they in fact were not twins. I was in shock about that and then I just watched them for a minute in the distance. I guess Jacob is as big and even bigger than his sister. Just yesterday he put on a shirt and boy was it tight! It seems he has hit another growth spurt. He wears boys 18 and he is 10. Just saying that is surreal. He actually has two medical issues. Autism spectrum being one but Beckwith Weidemann Syndrome being the other. With this one being larger for your age is normal. Unfortunately for him his maturity level is that of a 6 year old in a 10 year olds body and who wears the size of an 18 year old. 

   It has been years of struggle out in public with behaviors so much that the days I say "lets go do this" and come home with regrets I even tried. There are high expectations of just behaving from me, but now that thought that others are going to have even higher expectations with just the fact he looks so much older. Yes, he is highly intelligent but boy can things change with the flip of a switch.  I am hoping that things get better for him this year. I am worried with 6th grade comes many new responsibilities on doing things on his own. Which I have been trying to prep him on all last year.  I guess what I am saying is I am not upset about others perceptions as I am with him struggling to fit into this world. I am going to try to be positive for this coming school year and hope he stops growing because I seriously now need to check the sales and get him new clothes now......

Life Rafts

    Dealing with a parent with a child with special needs can be a pain the ass. No, I'm serious, we seem lost, flighty and at times like we just have too much going on. That is because we do and we try our best to seem like things are normal or running smoothly but they aren't. I've been on a roller coaster I didn't want on since 2008.

     From my oldest child's cancer to my oldest sons Aspergers and  to the death of a little one I am a shade of who I was in the past. Some friends and family avoid even telling me what the hell is going on.  I care, and it saddens me. Its like they don''t want to burden me with whats going on in their lives, but if they only knew that such distractions are a welcome release from the issues around me. But trying to understand these individuals is like listening to a foreign language I've never heard before and I have no clue what they are saying or why they are not here anymore. I totally get it, I'm full of baggage and issues that by asking me how I'm doing might bring about a issue you don't want to hear about. Plus I've changed a great deal, I know life is not full of sunshine and lollipops and maybe my life is too much of a reality check for some. 

       So I've been quiet for sometime, probably distant and if I have been I'm truly sorry.  It's proabably my fault. I try to share positive things about what is going on even though daily I'm burdened with so much. My children have become the center of all I do and can do. Dealing with their schedules, restrictions, therapy, and all that encompasses their well being is a must.  I try my best to surround my children and myself with happy times, positive influences and memories. My needs are always last as is seems. But then there are those that are here pulling me out of the storm.

   With the occasional random call, the oddball text or message, the offer to help with the kids, the lending ear that listens and encourages our choices and the words of encouragement when I have shared something sad have lifted me up and you know who you are. Thank You, and thank you for being my life raft in a sea of crazy that helps bring me back to normal, whatever that is.