Where do you start when something is wrong?

[emmanizzysmama]

When we were having troubles back in preschool, my DD's pedi referred us to a counsler. We never ended up going, but we are having issues again and I wonder if that is where we should start. The counsler is a LCSW and LMFT. Now for the background:

 

DD started out being cared for by a retired grandma who was also staying with her grandchild. DD cried a lot and Grandma would tell us she sometimes had to leave the room because she could not get her to stop crying. At home, she had to be interacted with constantly. She didn't care too much for toys unless she was playing with us. We noticed DD's eye was turning in and took her to an opthamologist. She had strabismus surgery at 16 months. She began patching and started wearing glasses at about a year and a half.

 

 

We moved her to an in home daycare that a former lead teacher at a daycare center began. This woman said that when DD got upset, she just could not calm her down. We called early intervention for an evaluation. DD scored within normal range but was borderline for hearing. Early Intervention suggested we not jump in so quickly to help her when she was frustrated but could not help us with services as DD did not qualify.

 

About 6 months later, DD moved to a childcare center on-site at my work. The 2 year old teacher asked one of the assistant director to come observe DD, but the Assistant Director felt her behavior was within normal and that she might have been going through a growth spurt. DD went through the next two classrooms with little incident. In fact, we received comments on how affectionate she was and how smart she was. She has some minor sensory issues. She didn't want to wear socks or jeans. I mentioned it to pedi but she said to just tell her she had to wear socks.

 

In the 5 year old class, thing really came to a head when she crumpled some papers and threw them on the floor (she was frustarted a drawing was not going the way she wanted imagined it). The teacher told her that her behavior was unacceptable and DD bit the teacher and then tried to throw the chair at her. They suspended her for the day but we withdrew her from the school shortly after. This is when we went to see the pedi and she referred us to the counsler.

 

We changed preschools to a more academic preschool (where some kids, including DD were already reading). She did wonderfully and we had no issues. In kindergarten, her teacher said she was doing great and only sometimes struggled with pefectionism. She was tested for entrance into the gifted program. She did really well on the achievement test (ITBS) but did poorly on the CogAT. Her ITBS was above 99% in reading and 86% in Math. I don't have her CogAt scores here to report them but obviously they were poor enough to keep her from getting into the gifted program. She had a second strabismus surgery in kindergarten. She also had numerous strep throat infections.

 

In first grade, she continued to do well academically. Her teacher ended up quitting in December but before she left, she wanted to have DD test for the gifted program. I explained that DD tested last year and did not qualify, but she wanted to test her again. It never happened though, because that teacher left. DD often complained to her new teacher that she was tired and slumped down on her desk. On the other hand, she sometimes would be overly excited and unable to sit still. I told the teacher I would not object if she wanted to have the counsler or school psychologist speak to DD. Her teacher didn't think that was needed. She said she thought DD might be bored and she would try to challenge her more. She ended up having her tonsils and  adenoids out and having tubes put in her ears.  DD often speaks in low mumbles (we are constantly having to ask her to speak up). She is very sensitive and has low frustration tolerance.

 

This morning, she felt her 3 year old sister laughed at her, so she bit her finger and generally pouted all the way to school. I just don't know what to do anymore. I have a child who performs above grade level but is not gifted. She has had some minor medical issues, which we have quickly addressed. The comment I get most often is that she is a sweet girl but she can be so negative and pouty. The academic work she can do (1-3 grades ahead) does not match her emotional capability (which seems to be 2-3 years behind).

 

I feel like no one wants to help or even acknowledge there is a problem because she is not behind academically. Where do I start? Should I keep our appointment with the counsler or go somewhere else?  We don't have a ton of money to spend on getting her evaluated (and I'm not even sure what we are evaluating her for or where to go for that). Any suggestions would be appreciated.

 

[clemota]

Wow - it sounds like you've been through a lot! :grouphug:

 

Two things off the top of my head:

 

From what you've written, it sounds like DD may need to be assessed by a neurologist or psychologist who specializes in 2E kids.  2E kids are "twice-exceptional," meaning that they are above-average in intelligence (and yes, gifted in one or more areas) but have other issues which are holding them back from reaching their full potential.  This can include a wide range of issues from LD's like dyslexia/dysgraphia/dyscalcula, anxiety, sensory processing disorder and depression.  It's possible that your DD is gifted and is unable to perform as well as expected on G&T testing because something is holding her back.  It's quite common in gifted children.  They also tend to learn in asynchronous ways - so reading may be off the charts but math skills can lag - just as one example.  It sounds like your DD's 1st grade teachers suspect DD was gifted, despite DD's first round of testing.  The "bored and needs to be

challenged more" is a big clue as well as the first teacher wanted DD re-tested.

 

It also sounds like DD may need to be evaluated by an occupational therapist for sensory processing issues.  Can I say that I am a bit saddened that your pediatrician told you to tell your DD that she just needs to wear socks?!  Children and adults with sensory processing issues cannot just ignore the fact that a sock (or tag or lining or what-have-you) is bothering them.  It can overwhelm the body and make them act out in unrelated ways (biting, tantrums, etc).  This is what was happening to my DD - now 11 years old - when she was 5/6.  We were dealing with daily tantrums and anger that would have been more appropriate in a 3 year old.  Occupational therapy eventually reduced the external stress so she was able to function on a "normal" basis.  But telling her to "just ignore" the tag on her shirt would have been like me trying to study for a test in a movie theater showing the latest action film: it can be done, but afterwards I'd be irritable and edgy.  And I would not have been able to focus on my studies.   There are not many pediatricians who understand SPD - ours didn't either  - but OT's are VERY familiar with it. Here is a checklist that may help you decide if SPD could be the issue.  

 

 

If it were me (and it has been, in the past!)  I would start out with testing by a psych/neurologist with 2E familiarity.  A competent examiner will notice other issues and suggest treatment (i.e. Does she need vision therapy, occupational therapy, remedial reading help, etc).  It would also give you some of the answers you are looking for.  It's not an inexpensive evaluation, and insurance rarely covers it.  But we've had to go through it twice now, and it has been worth every penny.  I'm no longer guessing what is causing my kids issues, and am learning how to work with them through their strengths and weaknesses.

 

Here's a link to listing of known 2E testers.  It can be a good place to start.  You could also ask your school counselor for recommendations.  Since your school has a gifted and talented program, they may be more familiar with resources in your area. 

 

Hope this has given you a place to start.  I'm hoping others will add their thoughts.  So sorry you've been having to deal with this -  Feel free to ask more questions - there is a LOT of great info on these boards!  

 

[emmanizzysmama]

Thank you for the reply. Yes, it is sad that the pedi just brushed it off and told her she needs to wear socks. I actually picked this pedi specifically because she minored in pyschology and she has been a pedi for a number of years. Then again, I blame myself for not pushing the issue. I probably wasn't conveying that it was a big issue and she took it as toddler stubborness. I was reading another thread where someone's family was like "see, I told you nothing is wrong" and I feel like that too. DH is just now getting to the point where he is like, "She's a normal kid,....right?" Before now, I'm pretty sure he thought I have whatever disorder it is where you make up things that are wrong (in relation to our DD).

[Arcadia]

DH is just now getting to the point where he is like, "She's a normal kid,....right?" Before now, I'm pretty sure he thought I have whatever disorder it is where you make up things that are wrong (in relation to our DD).

 

It took seeing how same age children behave in activities for my hubby to realize that my older boy has sensory issues.  The first pediatrician my kids had knew something was off since he was a baby but is not keen to refer.  The second pediatrician leaves it to us when we want a referral done.  For us, it would be the OT that would give a formal SPD diagnosis. SPD is covered under my insurance.

The books Highly Sensitive Child and The Out of Sync Child helped.

[OneStepAtATime]

I agree with the above posters.  If your mommy instincts are telling you something is off with her behavior, and your child seems gifted (and teachers think so, too) but she is struggling in certain things or not performing in the gifted range in certain things, then an evaluation through a neuropsychologist and probably an OT would almost certainly be the way I would go.  And seeking out evals from these sources should give you more specific answers for both strengths and weaknesses.  But screen them carefully.  You want a neuropsych that will actually take time to do a thorough eval, then spend significant time explaining the results, then give you the opportunity to come in and ask questions again once all the numbers and words finally sink in.  Some just give you a bunch of numbers with no interpretation. Best wishes.   :grouphug:  :grouphug:  :grouphug:

[Arcadia]

 We don't have a ton of money to spend on getting her evaluated (and I'm not even sure what we are evaluating her for or where to go for that). Any suggestions would be appreciated.

 

Forgot to answer this part.  For ADHD, Autism and Speech, we could do the evaluation for free through our school district.  I would just need to fill up a request for evaluation form.   For SPD, my boys would have to be evaluated by an OT under my family's medical insurance.  My school district does not do the SPD testing.  We choose to have a private evaluation for ADHD and Autism through our medical insurance and surprisingly our out of pocket is nothing due to hubby's company having a generous contribution to his HSA.

We are doing the formal speech and SPD evaluation next and our out of pocket would be little due to insurance.  We choose to go via private instead of school as we decide on school year by year so we rather their pediatrician have the full records and have any therapy through insurance.

My older was recommended for pull-out social therapy while he was in public school in 1st grade.  He has traits of selective mutism.      

 

Check what your school district offer in terms of testing. Then just put in the request to get it done.  At least it is free and a starting point.

[PeterPan]

The OT eval is something you know you need, so it would be a place to start.  The OT can run the screening tools for EF and spectrum.  Unfortunately, she sounds like my ds.  (frustrations, responses)  

 

You may end up benefiting from a number of evals before you're done with it.  If the ps can do stuff for you, see what they can do.  Sometimes they're great and amazingly helpful, and sometimes they do the bare minimum or parcel things out, only testing for the exact things that relate to school work.  

 

Just start somewhere.  My advice is always that if it's enough of a problem that you come on a board with total strangers and make a post like this in front of MILLIONS of people and the whole world, it's TIME.  Your gut is right, and it's time.  You don't need to doubt it or wonder.  It's time.

[clemota]

Just start somewhere.  My advice is always that if it's enough of a problem that you come on a board with total strangers and make a post like this in front of MILLIONS of people and the whole world, it's TIME.  Your gut is right, and it's time.  You don't need to doubt it or wonder.  It's time.

 

:iagree:

 

Trust your instincts.  I remember reading a comment on one of these forums by a person who had worked in a special ed or psych setting.  She stated something about how nearly 100% of parents who had suspected something was "off" about their child were correct.  I found that oddly reassuring - that it wasn't just me being an overprotective parent; it was a legitimate concern. 

[SadieMarie]

I would start with the counselor.  She/he can help you with strategies for home and probably knows who is best as far as referring you for evaluations for your dd.  We had good luck with a referral from our pediatrician.  And then we went from there until finally getting a diagnosis.  Good luck!

[emmanizzysmama]

UPDATE:  Since we last spoke, dh and I have have seen a counselor for help with parenting issues. The counselor suggested a sensory evaluation since many of dd's issues seemed sensory related.

 

                 I took dd for a sensory evaluation and

                 they actually tested her fine and gross motor skills. They explained that insurance won't cover just sensory issues, it has to be causing problems in other domains. As I expected, dd does not have any fine or gross motor delays,

                 so she does not qualify for therapy. The OT evaluator suggested testing for ADHD. I may wait until school begins to do this since the evaluation would be free through the school district.

 

Does anyone familiar with the process know how they evaluate a child? Is it just a checklist that parents and teachers fill out or do they observe and/or interview the child?       

[SadieMarie]

I am not familiar with the school evaluations.  Free is always good though.  I would just say that if you think something is up it probably is.  I knew something was "off" with my dd and nobody else saw it, or they just brushed it off as her being really smart because she was so verbal.  Or they brushed it off as not enough discipline at home  :cursing:.   We ended up getting a neuropsych evaluation here at the University and she was diagnosed with NVLD.  What you are describing doesn't sound like descriptions I have heard about ADHD though, not that I am an expert or anything.  Just based on my own experience, I would say not to give up yet.  And hugs, because it is really hard when you just want some answers and can't get them.

[OneStepAtATime]

Just be aware that frequently school staff do not have the training, background, experience or perspective to give a really detailed evaluation that could tweak out all the various issues/strengths your child may have.  A neuropsychologist might be your best bet.

[Guest Vallere]

I would agree. My husband is a Child Psychiatrist and he gets really bent out of shape with kids who are diagnosed with mental health issues by pediatricians or school counselors who have very little actual training in mental health, and then he sees them and feels like most of the time it's just a wiggly kid, or an overzealous teacher or parent pushing for a diagnosis when there shouldn't really be one. I know it's free with the school, but see a psychologist/psychiatrist for any sort of ADD/ADHD/autism spectrum eval.

[Guest]

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[Storygirl]

 

 

Does anyone familiar with the process know how they evaluate a child? Is it just a checklist that parents and teachers fill out or do they observe and/or interview the child?       

 

I've just written extensively about the IEP process as I understand it on OHElizabeth's thread "Talk sanity to me about evaluations" on the main learning challenges forum (sorry don't know how to link) -- look for my posts over the last day or so specifically.  If you can't find them, let me know and I'll figure out how to link or I'll just quote them for you.

 

 Also, I had my own thread on IEP issues in the spring, and I've seen several others since then. If you search the learning challenges board for IEP, I think you'll find a lot.

 

I don't think anyone upthread has suggested an audiology exam yet. I'm just wondering if there could be an auditory processing issue that is causing her frustration, since you say that she mumbles.

 

Trying to figure out what the problem is can be really frustrating. Don't give up -- it may take time, but getting her the help she needs can make a huge difference for her and help you understand her a lot better.