Learning disabilities related to Spina Bifida

Depending on how old your child is, you may have already discovered that his learning process seems to be different from the typical child. For us, we noticed that Lauren took longer to learn certain concepts, and forgot them much more easily. She also takes much longer to do chores and activities and often forgets what she is supposed to be doing. She is a typical kid in almost every way (except for mobility and toileting) except for her memory. She loves singing and dolls and dress-up. She wants to be a surgeon and she wants children someday. She loves to spend time with her friends and enjoys coloring, drawing, and writing stories.

We had a sleep study done as well as two series of tests, one with a child psychologist and one with a special-ed teacher. The sleep study showed that Lauren woke over 70 times during the night, and that she received very little REM sleep. A good night’s is imperative for learning and retaining knowledge. We all need sleep. To help Lauren, we diffuse Lavender or spray Roman Chamomile on her sheets. I also allow her to sleep as late as she wants, because we were told that her best sleep seems to be in the morning hours. We do homeschool, so that makes it easier. No buses to catch! We held her back one year in early elementary school, but she is catching up and doing well. She is currently in 5th grade.

The cognitive/psychological tests we took showed that Lauren has extremely poor long-term and short-term memory. She retains knowledge best when all five sense are engaged in the learning process. This is the only way that the professionals could explain how she knows what she knows. They were shocked at her memory scores. I have since learned from other SB parents that they are facing the same questions and issues. Again, we choose to homeschool, so we are able to ensure that she does have curriculums that are engaging to her and that she is able to move around and use what is needed to help her learn. If your child is in your local school system, work closely with the teacher to implement a plan of education that works for your child. Lauren does a lot of hands-on activities. She touches and feels, sees with her eyes. We read to her so she can hear while reading along with us. Her reading skills are very good. We also diffuse essential oils to help with memory and focus, such as Peppermint or In Tune.

Please let me know if you have any questions. I love being a teacher and a mom to two girls with SB. Both of them have serious memory issues but you wouldn’t know it! You have to find what works for YOUR child. I am a wellness advocate with doTERRA, so of course I use doTERRA essential oils. Let me know if you are interested in ordering oils for yourself. I’m glad to help.

14 comments

  • I should also add that the child psychologist suggested medication and I turned her down. I prefer to try natural methods before pursuing anything unnatural that affects the psyche.

  • Very interesting to read. I have an older (20) daughter, no SB, who is significantly impacted NonVerbal LD that shares some of these characteristics. Its never occurred to me to try EOs.

    I’ll have to think a bit about this, but may have some questions for you later.

    Thanks for sharing!!

    • You are welcome to ask me anything! Our sense of wellbeing and cognitive function are tied into our sense of smell, so aromatherapy might be a big help for your daughter. I’d love to talk to you! Not just to share my experience but to sit at your feet and learn more from YOU about parenting a non-verbal child. I know you can encourage so many parents with your story.

      • You are so kind to say that. You know, the NVLD has been rough at times, just because its not a well known dx. I’ve told my hubby, more than once, I’m grateful that SB is so OBVIOUS. No one can tell me they don’t think there is really a problem…

        My daughter is pretty severely affected. More than most that I know of. But it has been a blessing in its own way. You certainly learn to think about things differently!!

        Right now, I think the big thing for her is sleep. And maybe concentration. We are in a big transition period for her. And those are the two things we struggle with the most. She doesn’t sleep well (never has and we’ve tried all manner of solutions) and she’s so, so, so easily distracted. She’s looking for work these days with the help of some good community support services, and I’d bet improving those two things would make a difference.

        Any suggestions you have there would be much appreciated. And feel free to ask me anything!

        • What sleep helps have you tried? Do you diffuse essential oils at all? Lavender works for most people, but for Mira (my youngest has FAS, Autism, and hydrocephalus) we find that Roman Chamomile works well. Also Cedarwood is a great sleep aid. Frontal lobe damage somehow changes the effect of Lavender….well, the damage itself causes lots of issues, sleep included:)

          • We’ve tried lots of things, but not diffusing oils. Its something I just didn’t know of/think of until I saw you mention it here. I put a diffuser on my Christmas wish list and plan to start very shortly one way or another.

            We did try lavender on pulse points and in bath water. Nothing. But I will certainly see about the Roman chamomile and Cedarwood. (My hubby will LOVE that.)

            Interesting about frontal lobe damage and receptivity to the lavender. Not exactly surprising, but very interesting.

  • You said: “She also takes much longer to do chores and activities and often forgets what she is supposed to be doing. ”

    OMGosh, I think all my kids might have SB!

    No, all jokes aside, this is such helpful information. I’ve already been thinking about needing to find more full-sensory curriculum for use with Pooka. Do you have any recommendations? Especially for math!!!

    P.S. Jesus from My Bleeding Ink (who has agreed to write his story for our Adult Stories section) has a point on NVLD in his “Everything You Ever Wanted to Know About SB” post. Scroll down to #26. This was my introduction to NVLD and that this was something we needed to consider for our future.

    http://mybleedingink.com/2014/09/04/spina-bifida-faqs-everything-you-ever-wanted-to-know-about-sb/3/

    • You made me laugh. It is funny because for the longest time we thought Lauren was just our lazy child. Then we started putting two and two together and realized she was struggling in a very real way to accomplish things. Yes, Bleeding Ink’s list is SO good. I shared it on FB a while ago, so family members would understand, especially because the LDs aren’t so immediately noticeable. For math, I highly recommend anything with manipulatives, Math-U-See is a good one. Colorful workbooks are important also. I love Saxon, but the books are black and white and BORING. Horizons math workbooks are fun.

  • @MrsK, I just posted about gluten over on your Eczema post, which made me think about your older daughter.

    You know the story about my older daughter’s autoimmune condition. One of her doctors struggles with autoimmune problems that manifest themselves in very similar ways to her own. Well one of the problems is sleep. The doctor uses a mixture of essential oils on her wrists before bed, which works wonders for her. But it does NOTHING for my daughter.

    Through trial & error, we discovered that gluten is the culprit. I’ve never researched it to see if it is common or why, but it is a direct correlation for my daughter. When she eats gluten for a few days, she will stop sleeping for about the same amount of days.

    OK, I just googled it. Ha! Sounds like my daughter has lots of company. Interestingly the Livestrong article links gluten & insomnia to a B12 deficiency. Wow!

    You know that we recently did some DNA testing and found out that both my daughters (and probably me) have the MTHFR defect. I’m starting to find so many connections between folic acid/folate and other things. Now this. I can’t wait for my ND to get back from Cambodia so I can ask her SO MANY questions.

    Sorry, I got off-track there for a minute. I know gluten has been linked to both behavioral & learning problems. Your daughter might try eliminating it from her diet for a few days to see if it clears her head and helps her sleep.

    Has she ever been tested for Celiac?

  • I don’t think that gluten is the culprit, but I haven’t ever actively ruled it out. I’ll talk to her about it. It certainly can’t hurt to try.

    Any idea how long it would need to be out of her system to really be determinate?

  • So, there is a blog I’ve followed for years. The author just recently adopted a daughter from foster care. Yesterday she posted this. http://fosterhood.tumblr.com/post/103332783150/a-bit-about-clementine

    I loved her perspective and, though it isn’t NVLD, I thought it appropriate in general.

    Hope you enjoy it.

  • Check out the bottom of this article. It lists symptoms before and after eliminating gluten.

    http://www.drkaslow.com/html/gluten-brain_connection_.html

    From what I read in just one place about 50% of people experienced improvement in 3-4 days. The other half about 2-3 weeks. This is just me eyeballing the responses in a long forum I was reading.

    You could also just have her tested. Not sure what exact test they run. I want to say you can test gluten allergy, but then the celiac test is something different. But I don’t know for sure.

    If it was me personally, and I was skeptical, I would probably just give it a week and see if I saw any improvement. If I was more convinced I might give it 30 days.

  • And this! http://niederfamily.blogspot.com/2014/10/false-negatives-evaluations-of.html

    Holy cow. I love this.

    Edited to say: I know that the child in this blog IS nonverbal, and NVLD kids are verbal. It still speaks clearly to me about testing and the experiences we’ve had with my daughter’s inability to interpret the subtleties and presumptions that tests and their administrators have. This has been particularly true in the “Public” domain. Private school. Private therapy. These have been better.

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