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On bad days

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    On bad days

    I read Simply Classical. I was very impressed--like note taking impressed. We had a really good week last week (at home--it was asked, very politely, that he not return to the daycare he's been going to once a week due to his behavior.). The two older boys were gone to separate grandparents, so it was just me and the youngest. He learned several letters that he was missing. He was even calmer than typical.

    Then this week, with everyone home, no one has been able to get anything done, including the youngest, because all of our time is being spent dealing with his behaviors. It's honestly probably in the last two days, four solid hours of him screaming and flailing and having to be held back from breaking something or hurting someone or some animal. This is worse than normal for him, at least that's a ray of hope that he'll go back to his more normal level of difficulty. I am guessing that every kid regardless of special needs status has bad days, even bad weeks.

    How did you all deal with those bad days and weeks? Did anything get accomplished? If so how did you manage it?


    *Edited to add: This is really just looking for examples of how others have managed to continue the education of the others when one is having drastic issues. I know no one can really know the situation from over the Internet, and I know that at this point we are probably going to need some professional guidance. We do have all the initial paperwork submitted to the doctor's office for the referral to the only developmental diagnostic center in this state, and we're just waiting now to find out when the appointment will be.

    (The appointment will likely be months from now, and if they hold true to prior patterns, the initial appointment will only be an interview and then we'll have to wait at least another 3 months to get the actual appointment, so we might get the results by Christmas, if we're lucky. It was more like nine months of waiting last year with the oldest.)
    Last edited by Miah; 07-24-2013, 09:25 PM.
    Miah - married to Warcabbage, 3 boys, BS in social work, AS in Electrical Engineering Technology

    Evulcarrot - 18, freshman in college, Medical Technology , mild autism
    Battlebroccoli - 17, lives with grandma, attends a special high school program part time
    Doomsprout - 10, highly verbal moderate autism, anxiety, motor delays, sensory processing issues - SC 4 with R&S 4

    #2
    Hi, Miah.

    I'm sure I speak for many when I say we feel for you!!

    For anyone not familiar with Miah's situation, she has multiple children with various special-needs (excerpted from her earlier post about the school year):


    My oldest is 13 in 7th grade. He is generally a very sweet and calm guy, so I don't have overt behaviors with him. He is diagnosed HFA with an IQ of about 95, but severe executive functioning problems. Last year close to his 12th birthday he was rated equivalent to a four year old when it came to the amount of supervision it requires to get him through tasks, especially unexpected or new ones. He spends a great deal of time asking what his next step in a task is (and he can never use three words when there are forty to cloud the issue with). He has improved in the last year on some aspects of this--none of them related to difficult homework. He also has moderate to severe fine motor and visual motor integration problems, so writing and typing are difficult and frustrating, and he does his utmost (almost never through direct means, but he is a master of delay) to avoid them.

    My second child is 15 months younger. He just turned 12, and is also going into 7th grade. He is moderately severe ADHD, emphasis being on the H. Getting his body at the table and his mouth quiet are ongoing challenges. He is also a late reader, only having independently finished his first novel a few months ago. He's loved audio books for a long time, and even at eight, he would listen to books like The Wizard of Oz (his absolute favorite series) or The Prince and the Pauper. The reading issue is with the decoding, not the understanding, but he is easily embarrassed and frustrated. He is also mischief incarnate and can start something without even seeming like he is doing anything (but these things don't happen when he's not there, and the smirk says it all). He is really good at math. It is the only subject he'll sit still for.

    Now I have my youngest, who just turned 5 entering Kindergarten. He's been attending a Mother's Day Out preschool one day a week since last fall, and will continue through until next summer. They wanted him tested after seeing his behaviors at school, and the results of that were that his language skills ceiling age range was 12 (this was a few months before he turned 5), his physical skills all fell between low and high normal, and his social skills are in the 5th percentile. I strongly suspect Asperger's (well, would have been if that was still in the DSM). He is very, very smart. His memory is amazing (he often gets through conversations in movie quotes, but most people don't notice due to his huge store of movie phrases.) He stims a lot (mostly lots and lots of spinning circles on his tip toes, repeating the same word or phrase hundreds of times), he's extremely rigid, he scripts (in his mind) interactions that must go according to his scripts, he focuses in on his topic of obsession until he'll even forget to go to the bathroom, he arranges things in orders, he's got some sensory sensitivities. And then when things get interrupted or go off script we get him hitting himself in the face, hitting others, going into meltdown. He is often extremely clingy, as in literally wrapped around my arm, pressed up against my side. He also has asthma and if it's acting up all of the behaviors are magnified and multiplied.




    In our own home school, during those times that became especially challenging for us, safety became the main priority. The child with severe behavioral difficulties could not be allowed to be alone with anyone (or any pet) he might harm. Supervision was continual. This can be exhausting for one parent to bear alone. If your husband could help a little more than usual, this would be ideal. If not, or even in addition to this, another adult might be helpful to keep everyone safe and restore some peace for the other boys. Pace yourself. You'll want to interact in a calm, matter-of-fact way. Being rested & having some time to yourself will make this easier to do.


    Do you have a pediatrician that might help with a preliminary diagnosis or even diagnostic treatment (e.g., medication?), while you wait for the full diagnostic evaluation? The schedule changes (being dismissed from the preschool, having his brothers return after such a quiet and productive week with you) may have exacerbated his own internal struggles. Perhaps the pediatrician would see your son for this acute behavior, especially if you communicate that he just needs some short-term help, while you wait.

    Regardless of the approach you take, do not be too hard on yourself about educational goals at the moment. His own learning may be limited, except for his "best" times. If these are morning hours, then schedule his one-on-one academic time with you during these times. The structure will be helpful for him, and the continued progress will be encouraging to both of you. Most likely, he doesn't want to be "bad," but would prefer achieving and acting appropriately. A little academic success, especially because he does have such strong abilities, will help him right now. Whenever you're not teaching him, find whatever is most soothing and satisfying for him (listening to calming music, swimming, running, jumping on a trampoline, reading quietly on his own) for the remaining hours whenever you can.

    As for the other boys -- explain that everyone has difficulties sometimes, and their brother is having a very hard time right now. So you're going to bear with one another, until some solutions can be found. This could take a while, so everyone will need to work together. The older boys might have some insights, so allow them to offer (constructive) suggestions. Perhaps they have noticed something that especially helps prevent or avert their brother's meltdowns. Perhaps they would be willing to help you in some way (e.g., cooking, folding laundry, working on some academic subjects more independently, or even grading each other's work), while you work with your youngest. Assure them that you have already taken necessary steps to help their brother, and that things will not always be this way. You will be getting some help for him, but until then everyone will need to work together. If nothing else, they may need to be especially good at ignoring, for a time!

    Tell the boys how much they are helping, and how much you appreciate this, whenever you see them working to help the situation.

    As you wait for those evaluations, be sure to document the behaviors and triggers in bullet-point form (as directed in the Informal and Formal Assessment chapters in Simply Classical). As difficult as they are to witness right now, clear documentation of these behaviors will be helpful when the evaluation finally occurs.


    Maybe others will have additional thoughts for you--

    Cheryl

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      #3
      The bad

      This will have to be brief, as I am typing on an iPad. Sounds like you are having one of those weeks that brings us to our knees. I am so sorry. I know it can really sap all of your energy and make you question every decision you have made. Just keep holding on, one breath, one minute, one hour at a time. Sometimes we are forced to kind of put the other kids on hold to deal with the one that is having the greatest problems. Don't feel guilty about this.
      I think a good first step is to go to NCLD.org and download and print off the free Antecedent, Behavior, Consequence chart. This will really help you provide whichever professionals you consult with some concrete data. It also helps you to identify what is triggering the behaviors.
      I will absolutely be praying for you. I had a particularly rough day yesterday where I wanted to just grab the baby and drive away from the mess, and the misbehavior, and that feeling of being slowly pecked to death. And the special needs son wasn't even the one at fault. Fortunately, my husband came home and had a "coming to Jesus meeting" with the four that were being difficult and then did the dishes for me. A good night's sleep (and some chocolate) have helped immensely.
      This is the Bible verse that I cling to on the bad days:
      "But I will call this to mind, as my reason to hope: The favors of The Lord are not exhausted, his mercies are not spent; They are renewed each morning, so great is his faithfulness." Lamentations 3:21-23
      Blessings,
      Jude

      Dd 16, Ds 13, Ds 10, Ds 8, Dd 6, Ds 4, Dd 15 mos.

      Comment


        #4
        The others have already responded so well so I won't repeat it all. The only thing I can add is that his sensory needs might not be being met. Each kid has different needs so what works for my dd might not work for your son. This is all just meant as an example. My youngest (nearly 3) is a handful but most especially if she doesn't get her needs met for running, hard work (muscle/joint input like carrying or pushing heavy things), jumping, movement (like swinging or spinning) and sensory play (rice box, music, videos-visual things calm her).

        She has a sensory bin with squishy things, a vibrating bat on a stick (i can't for the life of me remember what this thing is called but it's an Occupational Therapy (OT) thing), pop tube that she can pull and then push back together, and a squishy ball on a stick that she can bash and it'll light up. I use this box for when she can't keep herself together. It's in her room where I turn on her music and she can play with that stuff until she feels better. If we are meeting her needs on a regular basis, her need for this quiet time with her sensory box has gotten more rare. We've gotten to the point where she'll take herself there if she's crying for no good reason. This took active practice with me going in there with her and doing some of the techniques my OT taught me to her and then encouraging her to use these toys.

        Maybe you could get into an OT before all the rest goes through just to get a handle on that part at least. Due to my own unexpected health problems, we haven't been able to get to her OT appointments and I haven't been consistent with doing these sensory things with her. Now her crying, pacifier use, shrieking, hitting, frustration, jumping (she will literally 2 foot hop through an entire parking lot and/or store even while holding my hand), and toe walking have increased drastically. .....As I write this, it's a wake up call for me to get back with the program! oops

        I know this won't be the fix for everything but maybe it can help to calm things a bit so that the house can be calmer. It might even help him to be able to accept the help that he'll eventually be getting for the other areas.

        If you're interested or think it might be helpful you could check out these books: The Out of Sync Child Has Fun, Sensational Kids, or The Out of Sync Child.

        Comment


          #5
          CelticDea: I will try to find those books you recommended. We were doing pretty good with the sensory stuff. He has a tub of homemade moon sand (8 cups plain flour plus one cup baby oil) and a "ball pit" (pool noodles cut up 3-4 inches long in a huge 4 foot long tub), light up bumpy balls (he likes to put these against his face). Anyway, I thought we were doing well with all that, and he seemed to be satisfied, then all of a sudden, he says he hates all of those, and none of them are calming him down like they were a couple of weeks ago. Thank you for the recommendations, they'll help with the search for more ideas. I also liked that crinkle tube, you mentioned. I bet he'd like that.

          SaintJude7: Thank you for your reply, I'm sorry it took so long to acknowledge it. I hope your bunch is behaving better for you. The way you describe of feeling like being slowly pecked to death, is so apt! I have that ABC chart you linked and we're trying to use it. So far, nothing much is getting written down, because it made me realize that I am really bad at picking out the antecedents. But at least I am thinking about it more clearly and learning.

          Cherylswope: Your replies always encourage me so much. He has settled back to his normal level of disruptions. We haven't gotten basically any school work done with him, but he's not beating on his brothers at that level or screaming all day. He even woke up this morning, changed into a shirt, didn't scream when I told him to also get shorts on, ate his breakfast, and played nicely with his brother. It was quite pleasant. He didn't want to work, so in the interest of peace I went with Horatius at the Bridge for the older two and let him spend an hour looking through an animal book with about 700 pages in it. Then at lunch, he even ate something new with only minimal complaints, and asked to do alphabet flashcards. Great day so far to balance last week.
          Miah - married to Warcabbage, 3 boys, BS in social work, AS in Electrical Engineering Technology

          Evulcarrot - 18, freshman in college, Medical Technology , mild autism
          Battlebroccoli - 17, lives with grandma, attends a special high school program part time
          Doomsprout - 10, highly verbal moderate autism, anxiety, motor delays, sensory processing issues - SC 4 with R&S 4

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