Tuesday, August 16, 2016

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.

Sunday, July 24, 2016


Thursday, May 12, 2016

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.

Monday, December 14, 2015


    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!

Friday, May 29, 2015

A Fish In Water

     Feels like we have been through enough this school year and any happy endings have been a welcoming surprise. Jacob struggled this year, but I have seen so much growth as well.  Not just the belly hanging out of pjs and pants turning into waders type of growth either. He has been doing really well with his ABA therapy and seems to have done really well in speech and social group too. He seems more engaged with others around him and has been working on including peers and playing nicely together.  I hate to make more changes for next year, but I have signed him up for an online homeschool program next year.
      I think he did great this year, but I want to give him more. I feel like I might of been lacking and it was a juggling of sorts too. I basically was his curriculum coordinator and sent all his work to be completed at ABA.  It was nice to have control of what he struggled on and tailor it to where he was at academically.  I felt like I finally knew where he was at and what he needed. But I still had that need to have him in an accredited program.  I felt like I might be missing something important. He just took the placement tests for this new program. I don't know why I'm surprised, but they said he should be in fourth or fifth grade. He is a 1st grader.......I worked hard on second grade last year with him and did know his math skills were that far. But I can't imagine him skipping that many grades in a new program. I told them 3rd grade for next year. I hope I'm not doing the wrong thing, my thoughts were to get him adjusted to the new program next year and after that he would surely qualify for the gifted program  the next year and take more challenging  courses. I struggled last year too.
     Thinking he would go back to public school. People questioning why we didn't give the public school a second chance.  I held out hope that he would be able too, but after this year I can see why it will not be an option for years to come. Call it a mother's intuition or whatever, but he needs ABA like a fish needs water. Don't get me started on the fact that this whole skipping grades thing never would have happened at his old school. Because " He has an IEP, he can't skip grades". Yes lets keep focusing on his disabilities and ignore his abilities.....
    I was also surprised he did well in ballet this year. He moved up, but struggled this year once they introduced the barre exercises. I will be waiting till late summer to see if he wants to continue. He seemed so pleased with himself for making it through the classes and the end of the year showcase.  He needs the break right now both from dance and school. Summer should be a good time for him and he has earned a break.

Monday, April 13, 2015

Autism and Bereavement

     It has been a rough few months. I wanted to write about holidays and stress in January and how parties affect Jacob. Also his birthday in February, but things turned from pure excitement to a nightmare in a quick amount of time.  I will do my best to give you Jacobs perspective on this, but its been an all around hard time for us all. In December right before Christmas I found out we were going to have another child. I couldn't wait to tell the kids and surprised them with an early Christmas gift. In the box was ultrasound pictures of baby Charlotte and a pack of baby onesies. They seemed thrilled.
    For weeks the kids fought over the sex of the baby. Sophie hoping for a sister and Jacob a brother. Jacob declaring after a vote that sophie wanted nothing to do with that it was boy. He and I voted for a boy and I only voted for a girl since Sophie declined voting and not giving into such a silly way to determine the sex. 
    I was having issues spotting the first couple weeks and went in to have ultrasounds done every two weeks. Jacob told me it was a boy because it had short hair in those pictures. Cracked me up, by his logic short hair meant boy even though I constantly told him the baby had no hair right now. Baby was fine every ultrasound time, until the NT scan. Which this scan I had no idea was even a test until after the results because I had never gone through this test for any of my other children. 
   I don't want to get into a play by play of each appointment after, it was like a slow train wreck and quite frankly not something I want to relive. We would find out each time something worse about baby Charlotte. After each visit we told Sophia we were not sure she was going to make it and what they found. Jacob on the other hand was going to be hard to explain this to. We found out about the baby being a girl at the same time we found out she had trisomy 13. We did not tell him it was girl until after she passed away. 
    I discussed ways to have this talk with his therapy and they sent me to this site (http://www.oneplaceforspecialneeds.com) They have great social stories for this and they gave me some other resources on how to deal with death. This situation was a tricky one, and I wasn't sure how to go about it. So I showed him the information and tried to look at it from his perspective. Never dealing with death before and knowing how he didn't feel connected to Charlotte I tried to look at it how he would. I ran and grabbed a book about the body from his home school library. He love science so I could tell I had his attention, unlike the other stuff I showed him. I talked to him about the brain and its sections and how Charotte had no forebrain. I showed him the heart and its sections and how Charlotte had only a two chamber heart. I talked about how she didn't make it to be with us because of this. 
   I could tell he finally understood,  I was talking on his level and he understood she was "broken". He wasn't visibly upset on the outside, but we all grieve differently so I don't know how he is inside. Emotionally he still is a 4 or 5 year old so I didn't expect much. But he understood which is half the battle. He seems to be back to normal now, but I just need to my find my new normal, whatever that is.