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Update and recommendation

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    Update and recommendation

    I haven't been around in a long while, but I wanted to give an update on my youngest, the Sprout. He will be six at the end of June. I finally got a diagnosis. I don't really think it is a complete diagnosis for a couple of reasons, but it has been a start. I found an alternate diagnosing company, who diagnosed severe anxiety. Apparently anxiety is on the blue list for childhood disabilities, so he has been accepted for Medicaid, which means he can, at last, start OT and Speech. (We have private insurance, but they wouldn't cover those things, or at least not enough that we could afford them.)

    His diagnoses as stands right now are: asthma, allergies, eczema, anxiety, anisometropic amblyopia (lazy eye that doesn't wander), chronic constipation, and sensory processing disorder. We're having to patch his weak eye now. He's done well with the patches, and terrible with the glasses.

    A recommendation for anyone with kids that are hard on their glasses. Find a place that sells Miraflex frames. They make frames to fit from three months to adult. They weigh next to nothing. They are made out of one solid piece of flexible rubber type plastic. No hinges, no nose pieces, no screws. The lenses are set into the frames so that the frames stick out further than the lenses just a bit, so that when he rubs them on the floor, the frame is touching, instead of the lens. For the smaller kids like him, the strap is a built in thing, so nothing is sticking out to poke him in the side of the head. If he stretches them out, just fold the legs in and they are reshaped like new. They come in many colors--for his style and size 27 colors. And best of all they are covered by Medicaid and private insurances. The only real problem is that his color of green ONLY comes in the size and style he is currently wearing. Next year he'll have to get both a different style and color. They are sort of pushing it on being too small for his face this year, but we went ahead with them. He doesn't do well with changes like that (so maybe check out their website and limit kids like him to the colors that come in all sizes).

    We should be starting the OT and Speech (for pronunciation mostly) hopefully in a week or two, they have to schedule update evals for it. He has finally calmed down some and recovered from the Christmas break of the big boys from public school (now that we have only a few weeks until summer break). He has allowed the priest's son, who is the exact same age, to draw him into a something awfully close to a friendship. They have at least progressed from simple 'tag' games to having conversations. The other boy is most definitely the instigator and one carrying it forward, but the Sprout is going along with it. We still have to leave him in the nursery during the service, because he can't tolerate the organ at all, but he is participating in the Sunday school group most weeks (out of 7-8 other kids in the class, I think four are on the autism spectrum. The lady that teaches it is awesome with them.) We are having some less resistance to leaving the house. I can now get him to at least go out in the backyard every day without panicking, and if we let him hide in a video game and headphones then we are able to go shopping for groceries with only minimal stress to him (and us and everyone in ear shot of him).

    As school goes, we are still working through the Jr K program. He still refuses to try to write his name without a highlighted version of it to copy, but he will now try to write the letters in the blank spaces and not get hysterical (runaway, hide in his safe room, and refuse to come near it again for days without a meltdown) if they are not perfect. For him, just being willing to see his less than perfect attempts and still finish the rest of the page has been huge progress. It'll probably take us the rest of the summer to finish the Jr K program. Then we are planning on starting the Kindergarten program. I am really looking forward to him reading.

    He knows the letters by sight, and the sounds of some of them. He is getting better at isolating sounds in different positions of the words, and has been playing with rhyming words. He wants to learn to read, and that has been a motivator toward getting him to do the workbooks. He is no where near saying the alphabet in order from memory though. (My mom said I was the same way. Wouldn't recite the alphabet until 2nd grade. She says I knew the letter names by 18 months and could read by 3, but refused to recite the alphabet.)

    He's been doing some amazing things with math this week. He has this hang-up with the number 12. I don't know why, but he always calls it twenty. He knows that 1-2 is twelve and 2-0 is twenty, but when he counts he says twenty in both places (and he usually skips 16 when saying them out loud--don't know why). Most people tend to completely dismiss him once he makes those mistakes, stop him and don't listen anymore. However, he loves numbers. Monday at the doctor's office he was playing with numbers, asking me addition problems that I was making him answer himself, and I ended up asking him the two's times table. What's two 2's, three 2's, up to 7 2's, which he answered correctly. Then he proceeded to just keep counting by twos up to somewhere in the 120's which is where he got bored with it. The next day, I asked him what time it was on the analog clock. We've done that a lot, and he tells me the hour and where the minute hand is and I tell him that's counting by 5's and what the minute is. So that day, he says, "Oh, that's just counting by 5's. I can do that." And went up to 100. Then his dad asked him if he could count by 3's, and he got to 48, before deciding that was a little harder and got bored with it. But we've never purposefully taught him that sort of thing, he's just asked us thousands of times, "What's this plus this?" and we've either answered or made him answer it. I honestly didn't even know he knew all the names of the tens up to 100!

    Anyway, that's a long-winded update of where we are. I hope everyone here has been doing well.
    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
    Hello!

    Sounds like you have a lot going on with your guy. Sorry to hear as I have similar situations with a few of my children and I know it can be very frustrating.

    By no means am I an expert but we have seen a plethora of doctors, been on different meds over the years, and I have done extensive research..desperately trying to "cure" my children of these ailments. My 7 yo dd, born prematurely, suffers(ed) from many allergies, eczema, sensory issues and chronic constipation. My 10yo ds has(had) anxiety, IBS, ADD (unfortunately passed down from my husband and my mom's side). I was at my wits end a few years ago and tired of med after med, only to have other side effects and not cure the original problems. We started elimination diets for the whole family and discovered my dd had(has) and milk allergy..which is often linked to eczema, chronic constipation and other allergy triggers. Off the dairy, her constipation went away in a few weeks, eczema does not flair up hardly at all like it used to, and she no longer needs inhalers or steroids, is focused and smart as a whip! My son, we found has gluten (come to find out, so do I), food dye, soy and slight dairy intolerance. Since removing these, his attention and memory has improved immensely, his IBS and reflux is practically cured. My three year old, thank the Lord, is the poster child for healthy. My 1.5yo twins (born very premature), we discovered one has egg allergy, and one a dairy. After eliminating these things, their fussiness has subsided and their bm's are "normal" and regular. They are super healthy and surpassing their growth and developmental milestones.

    Like I said, I am not a childhood health expert. However, just a desperate mama that has done quite a bit of research for a more natural solution to our family's diagnoses and ailments. It takes some time and patience to get it all sorted out, but it is so very worth it!!

    Just my ideas and two sense from what has worked for us. Please take these with a grain of salt. I hope others can give you some advice and recommendations too. I can recommend some wonderful books if you are interested

    Blessings,
    Katie
    Katie

    2019/20 6th year with MP
    DS 15: 10th, MPOA: Latin & HS Comp II
    DD 12: 7th, MPOA: Latin, Pre-Algebra, Chreia/Maxim & Ref/Con
    DD 9: 4th using 3A
    Twin DD's 7: 1st

    Comment


      #3
      Originally posted by Miah View Post
      I haven't been around in a long while, but I wanted to give an update on my youngest, the Sprout. He will be six at the end of June. I finally got a diagnosis....

      We should be starting the OT and Speech (for pronunciation mostly) hopefully in a week or two....

      He has allowed the priest's son, who is the exact same age, to draw him into a something awfully close to a friendship. They have at least progressed from simple 'tag' games to having conversations. The other boy is most definitely the instigator and one carrying it forward, but the Sprout is going along with it.

      ...As school goes, we are still working through the Jr K program. For him, just being willing to see his less than perfect attempts and still finish the rest of the page has been huge progress. It'll probably take us the rest of the summer to finish the Jr K program. Then we are planning on starting the Kindergarten program. I am really looking forward to him reading.

      He knows the letters by sight, and the sounds of some of them. He is getting better at isolating sounds in different positions of the words, and has been playing with rhyming words. He wants to learn to read....

      He's been doing some amazing things with math this week. Anyway, that's a long-winded update of where we are. I hope everyone here has been doing well.

      Hi, Miah.
      What a great update!

      As you might have noticed, we had a flurry of productivity with the release of Simply Classical's Level A, so I am just now responding.

      All of this is such good news. Let us know if the OT and Speech helps your "Sprout!" Has he started yet? Be sure to give the OT any results & recommendations from his sensory processing diagnosis and evaluation.


      As for this,
      We still have to leave him in the nursery during the service, because he can't tolerate the organ at all, ...

      a local friend has a son on the autism spectrum with the same trouble. He is now nine, and they found that slipping in just as the service begins, then slipping out at the end (avoiding the Prelude and Postlude) helps. They also give him earplugs before he arrives. He receives one Lifesaver for every 10-minute interval he tolerates the sounds without a fuss. She does not want him to miss the service, so she stumbled on the combination of earplugs and Lifesavers to allow him the benefits of being there each week. Your OT might have more suitable suggestions for your own son.

      Interestingly, now that my friend's son reads, he sings heartily on some of the hymns. Very heartily. I wonder if this helps him drown out the organ in his own ears. Regardless, it makes the older churchgoers smile.


      Keep us posted. Good to hear from you!

      Cheryl

      Simply Classical: A Beautiful Education for Any Child
      Cheryl Swope, M.Ed., with Foreword by Dr. Gene Edward Veith

      NEW Simply Classical Core Curriculum
      Memoria Press

      Comment


        #4
        church music

        Hi,
        Our son with autism could not tolerate attending church at all until he was 9 years old. It was just too overstimulating. We used to joke that Finn's idea of observing the Sabbath was a long, hot bubble bath. For years my husband and I took turns taking different combinations of the other children to Masses at two different times. Then one morning I woke up and realized that he had made so much progress in the recent past, we should give it a try. It was never truly comfortable for him, but he made it through. The earplugs seemed to help a little. (We have noticed that he is the only one in the family that can carry a tune, and music that is even slightly off is like fingernails on a chalkboard for him. And the Novus Ordo parish we were attending had guitars, piano, wind instruments, etc... played at varying levels of -- um, well, not exactly mastery.) Also he gets a small piece of Stockmar beeswax to work with his fingers during Mass. (I got the idea from Dr. Greg and Lisa Popcak on their Catholic parenting show. Perfect for kids who just can NOT be completely still.) He made his First Holy Communion at age 13. Shortly thereafter we switched to a Latin Mass community that celebrates the Roman Rite in the Extraordinary Form. I thought we would go once to give the kids a chance to experience it, fully believing that Finn would never be able to make it through. He was so much calmer, it was amazing. I think a big part of it is that most of the music is Gregorian chant, with some older, traditional hymns, usually a cappella. The organ is played only occasionally, and the choir is amazing. Even though the Mass is much longer, he can stay for all of it, including the prayers before and after Mass. It has made a huge impact in our faith lives to be able to share this with him.
        Blessings,
        Jude

        dd 17
        ds 14 (special needs)
        ds 11
        ds 9
        dd 7
        ds 4
        dd 2

        Comment


          #5
          We haven't started OT and Speech yet. The speech eval is scheduled for Friday. The place we go had an OT move last week, so they are shuffling schedules, but promised to have him worked in by next week. They decided that his eval from November is still good, so we are going directly into the two hours a week he qualified for then.

          I decided to try him again with taking him into church, as the nursery lady said he's not really supposed to stay in there after he turns six (June 29th). Our service has a lot of organ. The Doxology and the Sanctus both include the organ, then unless we are at the front then the song will be started before we go up. He... Well, I won't be taking him in again for a long time. I talked to the children's leader and the priest and we are going to try taking him directly to the TLC room at the back of the church. It has a one way glass and a speaker, but only the priest has a mic, so he is the only thing that comes through the speaker. With the door closed, the organ is still pretty loud, but it is muted. Apparently the reason he has been refusing to go to the children's church is that he knows they will bring him into the big church after the sermon. He knows now that they will bring him to that room instead, so we may have solved that problem.

          They also told me that one of the ENT's in town makes custom molded ear plugs for kids. (The ENT has a classically autistic son, and he is actually the one that recommended the place that I got the at least partial diagnosis from. I was in his office about my tonsils and the Sprout was with me. He recognized the behavior.) I am going to call his office and see what I have to do to satisfy either my regular insurance or Medicaid. Ear plugs that will stay in his ears would make certain life activities so much better for him and all of us.

          It's interesting that you mentioned that the off-tune bothers Finn so much. I am essentially tone deaf. I can catch big differences, but subtle ones...not at all (part of why I sit in front, fewer people to have my singing directed towards). Anyway, when I said the organ was what was bothering him, some people (because everyone had to come ask if we were okay) thought I meant because the organ is so off. Apparently it is in need of repair and misses it's mark on what note it should be playing. In fact when he screamed, a lot of people thought the organ had finally died! I hadn't realized it was off. I think it is mainly that it is loud, but that is something to think about. Maybe he'll not hate it so much once it is repaired.
          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

          Comment

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