Check in: Day 273

Week 39: We are not completely decorated for Christmas yet. We had a bit of a set back in that my son’s room had a slow leak in his window and it softened the wall board and warped the baseboards. Having a son with autism means he cannot let it go so he picked a GIANT hole in the wall. You could see the boards underneath!

We finally found someone who could remove the old boards, remove any mold underneath, fix the window inside and out then repaint his room. So we had to remove EVERYTHING in the room in 24 hours. His room is the place all things go to die. He hated having to sleep in the living room on the fold out couch for the past week. But, his room is finally done and we are slowly putting everything back into his room. All his furniture was in our room so that is going out piece by piece and we can start to decorate for Christmas. Our room is where our main tree sits.

He doesn’t understand that this was the best thing that could have happened. All the junk and papers are up off his floor and we can slowly go through things as we put them away. He loves his books and papers and has a hard time getting rid of anything. Last night we sat and went through close to 150 books. We made three piles – keep in his room, keep in other spaces, and books he no longer wants. I let him make the decisions but guided him through how he felt about each book and why he wanted to keep them or get rid of them. We still have lots more but we are moving forward thoughtfully. This is not easy for him and I understand.

We are asking my son to make lots of changes right now and it is tough for him all over. We have him using a new calendar system to work on his executive functioning skills. He really likes this one and I think we finally have one that may work once we get him to use it on his own. We are working on personal care and making him more independent of us. We are tying it to the calendar system to try and make it hands off from us. We are working hard trying to get him ready for college and life. Yes, we have been working on these things his whole life but when we look back at how far he has come from not even using eating utensils at 4 (though he could read and do math easily), to making friends in middle school, to now we see how much progress he really has made and it is amazing.

17 Comments Add yours

  1. Erika says:

    I can imagine that this was a big challenge for your son, in addition to all the changes in his structured days and environment. Do you think it would rather support the development in the long run since he learns to cope with changes or is it more confusing him?

    Like

    1. koolaidmoms says:

      Long term it will be better. He has trouble maintaining systems of any kind. He is definitely a shiny object kind of person who goes from one thing to the next and “forgets” where he has been or what he is supposed to be doing. His is so smart but socially/emotionally he is a 13 year-old.

      Liked by 1 person

      1. Erika says:

        Actually, that’s an eviable trait. He is in the moment. If only society would value this more instead of being focused on being faster, and more productive… that “time is money” attitude.

        Liked by 1 person

        1. koolaidmoms says:

          Yes, that is the hard part because we see him in the future struggling to hold a job or a relationship unless it is with the most understanding person or company. His ideas are so creative and amazing but the follow through would get him fired right now.

          Liked by 1 person

          1. Erika says:

            I understand what you mean, Marci. And I understand your worries well. He is still young and has a wonderful support in his family. Until he needs to deal with it more on his own a lot of time will pass in which he will develop more confidence for sure. Again, right because he has the family net to support him.

            Liked by 1 person

    1. koolaidmoms says:

      Thank you!

      Liked by 1 person

      1. You’re welcome! 😀🎄

        Liked by 1 person

  2. A friend of mine lived in an apartment where minimum maintenance was maintained. She too had an issue with a window. Your son is privileged having a great family.

    Liked by 1 person

    1. koolaidmoms says:

      Thank you. You are correct. He had that hole in the wall for a year because we couldn’t get anyone to fix it. But, it is fixed now and for that we are grateful.

      Like

  3. My son would do exactly the same thing. He is always damaging his bed linen and clothes by picking holes in them and then making them bigger and bigger. You are doing a good job preparing your son for college. We are also trying. This year it has felt like uphill work.

    Liked by 1 person

    1. koolaidmoms says:

      Thank you! I definitely feel like Sisyphus this year rolling the stone up the hill. But, I know in the end it will all work out.

      Liked by 1 person

  4. Fabulous tree 🙂 I understand about the books. I hate parting with them but have had to do some clearing out myself. I hope your son is enjoying his new room xxx

    Liked by 1 person

    1. koolaidmoms says:

      Thank you. He is getting there. It is “different.”

      Liked by 1 person

  5. I totally get this, and understand – my oldest is special needs as well, although he has come so far now most new ppl would not recognize it… all the extra daily training just to make it through a day. I was told once – do not project your child’s future by their 10 yr old self. The person who told me this had sp. needs kids too… they said at 10 they thought their kids were destined for prison – it was that tough at 10 ….. but at 16 they were honour roll students graduating, things change. And looking back shows how far we have come already – just as you said – Christmas will be extra special with his room back in order.

    Liked by 1 person

    1. koolaidmoms says:

      That is so true! I cannot tell you how many times we warn him – you cannot do this in public that they will arrest you or hurt you mistaking your violence against yourself as agression towards them. I am seeing further need for progress but so much has been done. Thanks!

      Like

  6. Carol anne says:

    that’s amazing! So good that he’s made so much progress! 😀 congradulations to him and to you too!

    Liked by 1 person

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