Bells, whistles and LIGHT BULBS!

by Dianna
(Georgia)

Hello everyone!


I have two daughters, almost 9 (Lily) and 6 (Leah).

Leah is the one who has had issues most of her life.

Physically, She had sinus issues and ear infections constantly as an infant, finally had tubes put in around 1-1/2 to 2 years of age. Ended up having a tonsillectomy/adenoidectomy when she was 4.

Moving to school issues - she didn't start even wanting to pick up a crayon or color or anything having to do with fine motor movements until she was in pre-K AFTER she had the T and A. She also had some social issues in pre-K, as she was wanting to keep to herself and didn't interact with her peers much. Seeing as her birthday is in July, she was a very, very young pre-K person, so we attributed this to her age, etc. She is in special ed at school - not all the time, just a few hours a week as well as speech - question of expressive/receptive language disorder??, and the school puts her under a generalized "learning disabilities" umbrella until the age of NINE!

Kindergarten got a bit better, she came a long way with her fine motor skills (spent a TON of money on different things to help with that as well as exposing her to a lot of things in her environment, the names of things, etc.). Now she is in first grade, and there are still issues going on. My three year old great niece has INORDINATELY better speech skills than Leah, who is 6. Thought she would have to repeat kindergarten and had NO qualms about doing that, but they said they saw no real reason to hold her back.

1st grade - HORRORS. She is having SO many problems. So many "DNM" grades which means did not master. I have no doubt in my mind she will be repeating first grade. And through ALL of this, there has always been a nagging suspicion in this mom's heart that SOMETHING was going on with her. So I decided to take action steps to get her hearing tested to make sure nothing was going on there and also get a referral for language. Autism didn't fit, Asperger's didn't fit, so many things just DIDN'T FIT!

Move to tonight. I was putting her to bed, and all of a sudden "sensory integration disorder" pops into my head. I work in the medical field, so I knew this was a real thing, but didn't know much about it as I was there getting her to go to sleep. Came out and could not WAIT to get on the computer and then I found this marvelous web site. And the bells, whistles and lightbulbs that went off were ENORMOUS!

She has hypersensitivity to sounds (covers her ears with toilets and will not even GO in bathrooms with automatic flushing toilets) AND hyposensitivity to sounds (all points but ONE on that list!). Really keyed in on the item in parenthesis on the list above - (no diagnosed hearing problem). She has hypersensitivity to oral input (picky eater does not begin to describe her - and it is NOT that she is being willful and obstinate and just refuses! There is a REASON!). Fear of the dentist, toothpaste. Hypersensitivity to smells, auditory language processing dysfunction list is HUGE for her - and also some items in the emotional list fit her as well.

I feel so relieved that there appears to be an ANSWER for what is going on with her. So will be calling my PCP tomorrow to get input from them on what is the next step, get a referral to an OT - whatever it takes to get her the help she needs! I am no longer waiting on the school to determine what is wrong with her!

For all those parents out there - TRUST yourself and KNOW that you KNOW your child better than ANYONE! Don't let anything stop your search.


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Mar 29, 2011
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My daughter
by: Anonymous

Reading your story I had a feeling that I am reading mine. My 6 year old daughter is having almost the same problems. She is visiting OT for almost one and half year as well as speech therapy. She is going to repeat preschool because SHE IS NOT READY TO GO TO FIRST GRADE JET!!! At the age of 6 she is not able to talk properly ...

I am loosing my mind because she can not write and is not willing to do anything with pencil.

Jan 06, 2010
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An update
by: Dianna

Thanks for your comment, Anonymous! I appreciate it!

Speech language pathology shows receptive and expressive language deficits to the order of being over 2 years behind for her age range. Neurologist said that there really wasn't anything she saw that she would need to take care of, but said that there are most DEFINITELY sensory issues going on! And it is VERY COMMON!!!! Recommended occupational therapy for that, but the next step the neurologist said we needed to take was to get neuropsychological testing - key in here - NEUROpsychological testing, not just psychological testing. They apparently test a wide variety of things with this, and it will give us a much clearer picture of what we need to do next. (Speech pathologist that called to say speech therapy visits were not covered because my daughter had no MEDICAL diagnosis suggested the neuropsychological testing also). Doing this testing before we pursue any kind of occupational therapy for SPD or speech therapy for those deficits.

Just wanted to throw this out there for anyone who might be searching for the next possible steps to take for their kids. NEVER GIVE UP! Blessings to everyone.

Jan 06, 2010
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go girl
by: Anonymous

You are an wonderful and incredible mom! Treat yourself to something special and give your kiddo a kiss for us!

Dec 03, 2009
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An update
by: Dianna

For those who might be interested - these are our next steps - she has a specialized hearing test which was "off" a little bit due to what they thought was just a cold - will follow up on that. She has a speech/language pathology appointment on the 10th and a pediatric neurology appointment on the 29th - and this lady has background in special education for 11 years before she went to JOHNS HOPKINS to medical school. I'm SO excited to go see her. Looking forward to getting a specific diagnosis as to what is going on so we can take more specific steps moving forward, as the school system has children under a very generalized umbrella until they are NINE. Forgive me, but I am not waiting 3 years....... :o) Blessings to every parent or guardian out there dealing with this. It is very real - becoming more and more convinced of that every single day.

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