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.

My Missing Piece

    The best laid plans are that, plans. Things change whether or not you are ready. I wasn't ready, Jacob wasn't ready, but we had to pickup the pieces and reevaluate what was best for Jacob. That really is the most important thing right there. Being your child's advocate is the most important thing you can do for them. Disabilities or not, you know them best.  You know what they need what their strengths and weaknesses are and you should fight for them. I see so many parents not even engaging in their children's services.  Trust me, we picked up and left one and asked for changes when we knew they were not a good match. Well it looks like we are at another turning point where that puzzle piece is changing and we need to find a better fit.
    We have decreased ABA services to make room for Jacobs schooling. He did the same school program last year, but I saw a train wreck coming two days in this year. He was so far behind and not getting the same attention towards his lessons as last year from ABA. So now he is home all morning with me doing school. Two days in and I'm happy to say its working for now. I have him enrolled in a online public/charter school. It has been great for him in so many ways. He gets the math and science he craves and breaks when needed. He gets some of his services through it as well like speech, social group and Occupational Therapy. He has made a few friends and now I see so much more time with him might be what I needed.

    I was missing him. He makes me laugh, he challenges me and makes me a better person.

End

The end. The end of my rope, the end of dance, and the end of school...for this year.

I think this year has been good in so many ways. Our online school choice was a perfect

fit for Jacob. He was able to skip a grade to challenge him this year and was able to get

the services he needed for speech, OT  and social group. They exceeded my 

expectations for an online school.  He actually seemed to get more out of it than the 

regular Brick and mortar school. He was able to get breaks from his school work and

get through his lessons and is doing well. I would say A honor roll this semester is a 

great achievement while getting used to a new way to learn. He was more flexible and 

even got through state testing with minor issues. I am proud of his hard work,  his 

willingness to get each days lessons done despite the ones he dislikes. All writing 

assignments were a battle, but we made it through.  It's the end of third grade and 

onto fourth.

     We have had issues at dance and whether or not we will continue next school year. 

His focus was gone after this spring. He was constantly in trouble and not appearing to 

be learning anything.  It was frustrating to watch. He constantly was getting electronics 

taken away due to bad behavior. It was the negative reinforcement trap we were stuck in.

A vicious cycle we couldn't break. Even though you ask him if he wants to do dance and

he says yes,  his behaviors seem to say otherwise.

  He mentioned martial arts. So we are jumping on that. I read a few articles listing 

Taekwondo as a good one for autism. So we are officially signed up and seeing if this is 

for him. Our concern is trying to keep jacob active. Instill a physical activity so that his

free time is not consumed with electronics. He always gravitates to those, which is fine 

for a child who doesn't become obsessive compulsive about it. I have hope that the 

future holds something for him. Whether it's just for fun or maybe a stress reliever.

Hen Hen

   We have added a new member to our little family this year and his name is Henry or as Jacob likes to call him "Hen Hen". With Hen Hen around things are definitely different around here some good and some bad. Jacob is finding ways to test us and see how far he can get with stuff before he is caught. The stinker knows our attention has been going towards Henry and he's banking on the extra 10 minutes he can squeeze in before bed playing the DS or grabbing that extra mini muffins pouch from the pantry while no ones looking. We have some new behaviors that have cropped up since the little guy came and we are trying to work through them. I knew there would be some transitional issues with Henry around, but its spilling over to everything from home, to dance, and now therapy. We are going to try to work though them the best we can, I know it will take time.
  Now there are moments when I see how much Henry makes Jacob pause and smile. He is not one to ask to hold him, which he has done maybe a hand full of times. But I asked him to here in this picture and as I came back into the room I caught him looking him over and kissing the top of his head. I heard him say "I love you Hen Hen" ever so quietly. I know he does love him in his own way and will be a great big brother!

Summer Break

    This is a unpublished post I was working on last summer and the same feelings have come back yet again as summer approaches:

     I miss my little man. I for years have felt like I have missed out on spending time during his preschool years until now and 4 summers worth. I don't think people realize how much time he spends in therapy. It's 40 hours a week! Its like having a job. I take him out for special occasions, family outings, and appointments, but I feel a gaping hole that  I haven't spent the time with him that I wanted too. I know it's for the best because we have been told many times early intervention is so important and insurance typically in the past starts dropping hours at this age. It is interesting that the insurance companies say he can get that at the public school system. Just so you know, they do not have ABA nor do they implement it in their program. In fact after giving them suggestions to do so in kindergarten and them not doing so we saw how that ended. It was a nightmare that I don't want to repeat.
    I hope this sacrifice is worth it. I for now have to pack in all the fun we can when he does get to be home!

I hope that I can pack in as many memories as I can in his time off in this coming summer like we did last summer as well.

Waves

    It has been awhile since I've posted about the little man. I'm sorry about that, seems like I had my own struggles this year and had a hard time getting myself figured out. He has grown leaps and bounds this year. Learning a new homeschool program and succeeding in his first semester with almost straight A's! He has been working on his behaviors and even took on two more dance classes this year as well as two parts in their nutcracker production. Don't get me wrong here ,we have bad days, really bad days and even great days. It's like riding a wave you never know which way it is going or how hard it is going to crash.

    I still struggle with parents who don't understand that Autism is not something you can see on the outside. It is in inner battle and many people have their own battles inside and are considered "normal". His are just different and you can't always see them. When you do see them they take on many forms. Could be a sensory overload issue and then he has an outburst, or maybe he is sensory seeking which for Jacob is rough play or in the past touching others hair to calm himself. It could be a transition or a sudden change of plans that sets him off.  Oh riding the waves....
   Other waves we are riding lately are dealing with services for the little man. Seems like the minute we get everything right in order and he is getting in the groove of things and then something gets changed through insurance or school. It's driving me nuts. Despite the issues of not knowing what is next for him, he seems to get great support from those who try with him. I can hear it in his voice when I say your name to him or the giggle he makes when I tell him you are coming over or we are seeing you soon. Some of you have been lucky enough to hear him express his love to you and others yet don't realize he does but those of you who have made of a point of talking with him about the things he loves or just trying to understand him have helped him this year. He feels loved and I love that!
  We took a trip in the spring to the ocean. He just loves the beach he had only been to the lake. This was his first trip to the ocean that he remembers and he was timid of the waves, but with encouragement from his sister he was loving them and riding them in. Ahh the waves. Thank you to all who have encouraged him, tried to connect with him and help him grow!