Special Needs

How much time do you spend........

thinking about your SN child? 

I'm talking: Therapy, what you need to implement, what they need you to do, what you need to buy for them, what you need to research, who you need to call, what time they need all their 'stuff' to happen, why they are quiet, why they are loud, if this will help or not, how much will this cost, will this toy benefit muscle tone, what coloring page will improve this, what exercise will benefit that, did someone answer my question on the bump, upcoming evals, will this food change his mood, should I let him crash or just watch TV, did I cut his tag, maybe I said too much, will he qualify for preschool, oh yeah- I need to make another list, maybe playdoh is good now, eat crunchy stuff to wake his mouth before lunch, what dinner will he tolerate, hold his right hand down as we play mancala, sit on the ball while he does the puzzle, fine motor skills with these blocks, will he walk with me.......... you know..... the list is endless.

Maybe I shoud ask you how much time do you NOT spend. But last night, I just had one of those total MENTAL breakdowns. Just all out, gut wrenching sobbing. I told DH - it is NEVER off my mind. I ALWAYS think about it. It was really hurting me to think about that.......  It has almost been a year. June 2 is the one year anny. of his Dx. It just hurts me to think about all the years prior to that & how I've never really had ANYTHING fixated in my mind like this.

I REALLY REALLY try to take mental breaks. I stop researching, I stop thinking (or at least I tell myself I am). But then, in comes the SLP and wants to talk about new goals - and aw man - I'm on a mental break - I have NO IDEA!!!  I've actually told her that. 

I hope I'm not the crazy loopy one on here who just NEVER gets it off her mind. If I am, please be nice to me. I'm just curious. I figure we ALL share this in some capacity. Maybe those who are more than 1 year in have some answers.......?

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Re: How much time do you spend........

  • Honestly this is how I ended up on anti-anxiety medication and in therapy.  I think if you couple a person with the need to "fix" things and ASD you can have a mess on your hands.  On some level I wonder if I haven't really accepted the whole thing since I think I can some how change/improve/fix things with my DS.  I try to take breaks too, but I really struggle with it.  Its sort of strange - when he's having more obvious symptoms (lack of communcation, echolalia, etc.) I get more manic with my searching.  I need to badly to connect with him that I sometimes think I make him more nervous which in turn triggers my guilt...  Let's just say its an ugly cyle.  I'm not really helping you here, but you are definitely not alone.
  • I go back and forth.  I'll spend awhile obsessing and reading and researching and worrying.  And I'll feel panic that I'm not doing enough, etc. 

    The last couple months have been like that for me.  I'm coming down from that now though, I think because I've finally gotten him into therapy that I'm happy with and he's starting to show progress.

     

    DS - June 2006 DD1 - November 2007 DD2 - August 2010
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  • I think about it ALL of the time.  There has been so many times, that I have just sat there and cried my eyes out.  I always think that I am not doing a good ebough job.
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  • I think about it pretty much day in, day out.  It's always find the next thing for him, what should I be doing for him, etc.  I don't know if it will ever end.  Probably not.  At least it takes my mind off the "is he gonna make it..." question though.
  • I thought of this post today while feeding DS breakfast. He eats probably 15 things total including snacks. I am able to go to Mcdonalds in the morning because he loves the sausage. First I was thinking how much I would love to pull over somewhere at lunch or dinner time and just grab him somthing to eat at any old random place. My only other option out really is a hotdog at costco or target. Then I thought of you again because we just started theraputic listening and brushing and I didn't do brushing at all today. I 'll just start over tomorrow since yestrday was day one but anyway I'm thinking we do the music twice a day at least 3 hours apart and im supposed to brush every 2 hours. I never had my kids on a nap or feeding or sleeping schedule and here I am supposed to have a schedule. Then since ds is so selective with food, I have been struggling inside becuase I want to do the feeding program our OT does and she has graduated hundreds and the base graduates leave with 10 foods from each food group. 1O FOODS EACH?!!!! so I desperately want to commit so I kick myself for not being serious about it . I just can't find the brain capacity and time in the day to do it. I will this summer but in the meantime I am doing the  "just noticable difference" so this is when I though of you specifically , when I was taking a tiny tiny tiny morsel crumb of ds 2's pancakes and blending it in with the sausage bite cause it kinda looked like it and he was eating it just fine. I was thinking um to answer your question, I THINK ABOUT IT EVERY MINUTE! I'm in a constant limbo with my insurance co wondering if tomorrow or Tuesday they will call and have approved more sessions of speech and ot and then I can go forward with my pt eval. I'm thinking he is too young for every speech camp in the world  because he isn't 3 or 2 and a half even for that matter, so I want to bulk up on therapy this summer because he starts EI in the school next year and I want him ready to roll. I think of therapy and am I doing enough at home. so yep Im with you. I think you are really doing wonderful things for your son.

    your slp frustates me only because I wish you didnt have to come up with the goals. Certainly if you had things you wanted to work on of course she should include you but I just want someone to say this is my plan etc. and I really really do get you when you say the money is non. That's why I keep stalking you to go to the DIR/floortime website :)

     but I definately thought of this post today and I answered immediatley to myself . all day

  • A lot of time, but fortunately a lot less the past few weeks. Now that we have an ABA program up and running, that is one less thing I have to worry about. Our pediatrician has a case manager that helps find therapists for her patients. So, I have released that duty to her in finding ds an OT and PT. That has reduced my stress a little. Fortunately, we have lots of family around to help take him to his therapy as well, so my dh and I can continue to work. We need to considering how much all this therapy is going to cost.

    The financial part is probably the only thing that weighs heavily on me. Although, we really didn't have much debt before all this, so that has helped out a lot. Plus, in the end insurance may come through, and of course medicaid. Still playing the waiting game there.    

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