Greatly Blessed

Greatly Blessed

Saturday, March 8, 2014

Unpuzzling Luke


I didn't realize how much I was holding on to the doctor's words from Luke's previous visit to the MIND Institute last July.

What the doctor said:  Luke doesn't meet the criteria for an autism diagnosis at this point.  That may change as he gets older.  

What I heard:  It's not autism.


This week was Luke's follow up visit at the MIND Institute, and one of the first things Paul said when they got home was, "He now meets the criteria for autism."  I felt like someone punched me in the gut.

He also mentioned that this may make additional therapies available to Luke, and he should qualify for respite care when he turns 3 this summer.  "More therapies" does not excite me, as we already have 4 therapists coming to our house, but I imagine those will all transfer to school based services when he starts preschool in the fall.

Luke's MIND doc re-assessed him.  He was previously assessed to be about the level of a 5 month old, overall, with some lower and some higher areas.  He's now at the level of a 7 month old overall.  Which means in 8 months time, he's gained 2 months worth of skills.


I still think there's more to come, diagnosis-wise.  We still don't have lab forms yet for his next round of testing.  I'm very interested in the results of the copper testing.  I'm hoping that meeting this criteria doesn't cause his healthcare people to say, "Well, he's autistic, let's just leave it at that."  I do think that the other syndrome that was brought up at UCSF is a good fit for the way Luke presents, and I would not be surprised if that were his eventual diagnosis.  But I'm concerned that with a dx of autism, the powers that be might decide not to bother with genetic mapping, because it's so expensive.  I think we could be many months from the answers in that respect.


I'm finding it a little ironic that the organization Luke's MIND doctor recommended for additional information about our nonverbal child is called Autism Speaks.  I am not ready to be the mom with the puzzle piece bumper sticker.

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15 comments:

  1. Sending prayers for strength and understanding your way!!
    Ethan will almost certainly be getting and Autistic diagnosis in the next month, it's not an easy thing for us mamas to hear but great to finally have some answers. I have to agree with the ECSE once he is 3, Ethan was enrolled for 3 years and had some amazing success from it, unfortunately last summer we went on a 4 day family vacation and we are now back to where we were before he started ECSE...
    We have seen some success from using natural supplements, I have great things about ABA (which insurance only covers with an Autistic diagnosis) and Neurofeedback (which most insurances don't cover.)

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    1. What supplements are you using? I've purchased a few things on the recommendations of others, but I'm not as consistent as I should be.

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    2. Have you tried fermented cod liver oil and high vitamin butter oil, and a diet of healthy fats to nourish his brain? I'm seeing amazing success with this approach for neurological disorders!

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    3. We have had to play around with them to figure out what works this has been a very helpful site
      http://healingautismandadhd.wordpress.com.

      We do magnesium soak baths at least every other night, DMG(chewable pill), Nordic Naturals EFA'S & Ultimate Omega DHA, and Kirkmans Labs TMG/B12/Folinic Acid.

      I have also heard a lot of good things about the cod liver oil and high vitamin butter oil as Michelle mentioned but haven't personally tried it yet.

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    4. Thanks, I'll have to check that out. Luke gets Omega 3 packets, Mariposa Lily, Ignatia Amara, and something else... as well as essential oils.

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  2. Praying that God's mercy and grace are abundant in your life at this difficult time. The "label" will help you get more therapy and services for him, but I relate to the "punched in the gut" feeling when you hear it. Insist on the genetic mapping also! Lots of "syndromes" present with autistic tendencies. It's wise to find out everything you can about your little guy.

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    1. Thank you. Even the thought of more services is a little overwhelming right now, but I understand that it's best for him.

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    2. I completely understand the thought of more services being overwhelming. I'm hoping some of the services are more "respite" type of things for you. When he can go to your district Special Ed preschool, that will be helpful. Some of his therapies will be handled there at school!!

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    3. I hope so, too. We have a drop in respite facility here in town that I'm hoping we'll be able to be approved for after Luke turns 3. There's no respite at all for kids his age here. Which seems crazy to me, but what do I know?

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  3. We decided to forgo in house services and began off site speech and it seems to be the right thing to do. We also are discovering that our daughter "may" throw herself AT people because it's her way to keep the person STUCK so they will continue to play with her. While visiting my family, many times, she does the same thing to my brother and when he is done playing, she will cry and come to me for comfort. At home, she prefers me and gets upset to sit on anyone's lap. She loves hubby, but wants me if I am in the room over him. She also will give my Mom her shoes and go near the door and say Mama, as her way to say, I am tired and want to go home. She is making progress, but slowly and with our extremely active family we have realized she is equally matched in her desire to be active. We took her for a walk and she walked with us for a MILE!!! We only came in because it was late, but if Autistic, she is super social, loves the outdoors, makes great eye contact, iniates play with our family and comes alive with stimulation. We are beginning to wonder, by her desire to be out and about, that Did she create a world for herself just to survive. Walking with her showed us how much she adores the freedom of being out, it was Truly eye opening!!! Only time will tell, but with the issues she has, it makes me now wonder, how institutions truly affect a small child. We think one thing, but in reality part of the puzzle just might be, our specific child and how they coped, not what any expert says. In our case, our girl is completely healthy other then her "autistic" issues, but then again with my older 2 being totally functional but on the spectrum, seriously, she fits the spectrum but then doesn't! Every chikd is different, but for us, we are now going to ramp up our activity level further, because this may be the key in unlocking our girl further! Thankfully, she is super flexible in schedules and places we go, totally NOT autistic like so the skies the limit! At the end of the day, God MUST have a serious plan, now all we got to do is figure out WHAT that plan is! LOL And again, thank you for being so transparent about Luke, I love to hear about him because we are on similar paths and I learn and am inspired by your families story, it truly is an encouragement to me, that someone out there gets it! :-)

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    1. Oh how exciting for you! I'm so glad she likes to get out and walk! :) That's great!

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  4. Okay, a positive spin....

    For every three months a child spends in an institution, they are delayed developmentally by one month. Add an unknown special need and the delays are greater. But in 8 months, Luke progressed 2 months. If he continues at that rate, he will get to the finish line eventually. The big unknown is where the finish line is - what is his potential? I think that that is the question that drives parents crazy. It's certainly driving me crazy with my own kids. I am praying for you and Luke and your entire family, since the actions of one small boy effect everyone. Mostly, I'm praying for a diagnosis and path that will be clear and will help Luke reach his full potential.

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  5. I think you've hit it. My big fear is, "Where is the finish line?" Am I going to be changing diapers until I die? Is he going to be wheelchair bound forever? Will we ever be able to go anywhere without having an "escape plan" in case he starts melting down again? Will the other kids resent not getting to do normal things any more because we can't take Luke out?

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