New and so thankful to have found this!

Discussion in 'General Parenting' started by lostinthewoods, Feb 17, 2012.

  1. lostinthewoods

    lostinthewoods New Member

    Hi everyone,
    I was looking for information about neuropsychologist evaluations, and I am so thankful that Google led me here. I have been sitting here, glued to my computer for 2 hours reading about other moms who are going through what I am going through. It can be so very lonely dealing with these kids with "invisible" disabilities. They are so obvious to us, and I am so tired of people telling me "he's just a boy."

    So, here's my story. After struggling with infertility, we turned to IVF and I became pregnant with twins--a boy and a girl. So blessed, right? True, but it has also been a very difficult ride. My twins are now 4. My daugher is sweet, kind, deep, and very wise. My son has a sweet heart, but he is extremely difficult in almost every way. He came into the world with his eyes wide open. We thought he was just so observent. As I look back at pictures now, I can see the fear and terror in his eyes even as a newborn. My boy was born with hypotonia, so he has always had low muscle tone, a slack jaw, and some speech/articulation problems. His twin sister of course, is very capable physically. He has spent his entire life comparing himself to her and in almost every way he feels like he is terrible and it drives him crazy. The fact is, he is extremely bright. He is obsessed with numbers and letters and taught himself multiplication just before his 4th birthday. At 6 months old he really learned how to whine, and that was the start of it all. He was extremely demanding, whining constantly, wanting to be comforted, reassured. He is unbelievably rigid--if things don't go the way he has imagined, he will throw a fit. He is anxious and can't make a decision on his own--most often he asks his sister what she wants and goes with whatever she says. He doesn't know how to handle social situations and kids at school don't like him much. He blames others for his own mistakes and shortcomings by screaming at them, saying "it's your fault." He can not stay away from his sister and is physical with her over even the smallest things.
    The first time I read "The Explosive Child" I cried for hours because it was my child. I was so hopeful. My husband and I went to a training with Dr. Greene. We were both totally on board. But we just couldn't make it work. My son seems developmentally unable to elaborate. Say, "I noticed you had a problem with X, what's up?" and he literally can not tell you. So, we really struggled and ended up feeling rather hopeless again.
    Right now, he is in preschool and while he has amazing teachers, every day is a challenge. We just started seeing a therapist because we were told by one initial evaluation that anxiety seemed to be his biggest issue. Now his school has recommended a neuropsychologist evaluation. We do not have insurance, and while we aren't poor, it's not like we're rolling in money either. I'm just about to explore the various options locally for a NP evaluation, but does anyone have a ballpark idea of how much it costs?
    As I said, I am thankful to have found this site and look forward to learning more from all of you. I feel like we have been walking in a dark forest with my boy for 4 years. We knew there would be a mountain to climb, but we had no idea how big it would be. Here we are now, at the very bottom of the mountain, and we could never have imagined just how big it is. But we are putting on our backpacks, grabbing hands, and we will climb this thing.
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I have to run to work so I can only post a few lines.

    Look up Aspergers Disorder. Your son sounds like that could very well be his problem.
  3. TeDo

    TeDo Guest

    Lost, I am sooooo glad you found us. I also have twins (both boys). Your little guy sounds a LOT like my difficult child 1. He is VERY attached to difficult child 2 but he also gets the angriest with him. difficult child 2 is his safety but he is also his "safest target". THAT is normal for twins so don't worry too much about that except when they get older you will need to explain to your daughter the role she plays in your son's life.

    I agree with MidwestMom that it sounds like an Autism Spectrum Disorder. That is what my son has and your descriptions sound VERY familiar. There is a LOT of anxiety associated with Autism Spectrum Disorders (ASD) and my difficult child 1 struggles even MORE than usual. The Explosive Child didn't really help difficult child 1 in the beginning (2 years ago) but it helped ME get an understanding of how he thinks. Your son is too young to participate fully in it but keep trying. It might also be that he doesn't have the words. My difficult child 1 still struggles with this but we are SLOWLY making progress.

    A neuropsychologist can be very expensive. We have Medicaid and they paid the entire bill so I can't help you there. Sorry.

    I will share any experiences I have acquired over the years if you think it will be helpful. I know how frustrating it can be. Another thing you might want to look in to is contacting your county Social Services department and ask for help there. They will sometimes pay for evaluations and stuff and they can maybe even get him on Medicaid (don't quote me on that). Getting Occupational Therapist (OT) and Speech Language Pathologist (SLP) evaluations will also be good. The Occupational Therapist (OT) will help with sensory issues and the Speech Language Pathologist (SLP) can help with expressive speech. In ADDITION, I would ask the school district IN WRITING sent RETURN RECEIPT REQUESTED for a "thorough evaluation for Special Education Services including academic, psychological, behavioral, Occupational Therapist (OT) and Speech Language Pathologist (SLP) evaluations". They will do a bunch of testing at school in many areas within a set period of time and he will probably qualify for help through school too.

    Good luck and stick around. Ask questions any time you want.
  4. keista

    keista New Member

    Hello and welcome!

    Ditto MidwestMom and TeDo. Six months ago I would have been "iffy" about considering Asperger's since he sounds oh so much like my DD1 at that age, but she just got her diagnosis (diagnosis) of Asperger's two months ago at the age of 10. Interesting thing, too. The first evaluation does NOT put her on the Autism Spectrum, but also does not put her at "typical". The subtests, however put her smack dab on the spectrum. Confusing stuff and that's why the evaluations take so long and the neuropsychs are expensive.

    Disclaimer we don't diagnose and we are not attempting to diagnose. We are merely giving mom-feedback of a possible direction for you to look in based on our own experiences.
  5. TeDo

    TeDo Guest

    Ditto the Disclaimer!
  6. Ktllc

    Ktllc New Member

    I'm sorry, husband just came home after being gone for 1 week. I just have 1 minute.
    Neuro-psychiatric evaluation are aboutr $3,000 in my area.
    Anxiety: usually the first diagnosis a kid that age will get. Makes sense, a lot of disability would create anxiety. But it is important to know if something else is causing the anxiety.
    Ditto: speech evaluation, Occupational Therapist (OT) and neuro=psychiatric are the best course of action in order to get answers and services.
    Services can be very expenses though ($100/hour for speech or Occupational Therapist (OT)).
    Go to social services and see if there is a State insurance for children. The income limit is ALOT higher than medicaid.
    If you end up getting a diagnosis, there are also some waivers you can get. Social services might be able to guide you as well.
    Ditto: request school evaluation with return receipt. it is your cheapest way: it's free and they cannot deny it.
    It is a journey, but you will gain confidence as you go. You will gain understanding of your son's issues.
  7. SRL

    SRL Active Member

    I agree with the others that this sounds in the neighborhood of the Autistic Spectrum Disorders.

    At minimum, these would be kinds of evaluations you would want to cover.

    1) A primary diagnostician who could diagnose or rule out Autism Spectrum Disorders (ASD)'s and evaluate for any associated issues such as anxiety. This could be a neuropsychologist, but also could be a developmental pediatrician or Autism clinic. A school district could give an educational label of Autism for the purposes of school services, but it usually has to be really clear cut for them to give the label without a medical diagnosis. Do some inquiring around as some of these specialty areas may be able to do it for less cost in your area.
    2) Speech-language. If you don't have insurance I would do this through the school district. This area includes articulation issues, speech-language processing, auditory processing, appropriate speech (ie volume, tone, etc) and social speech.
    3) Occupational therapy. If you don't have insurance I would do this through the school district. This would assess for sensory processing disorder, as well as gross and fine motor skills.

    Is he in a regular preschool? If he's in a devlopmental preschool through the school district some of this may already be done. Otherwise you would need to write a letter requesting an evaluation to the head of special education in your local school district. It would be good to get on it now as they're going to kick into high gear next month as the begin preparing for next year.

    You're dealing with letter and number obsession you'll want to look into hyperlexia. This is a good site with a lot of information, plus an active discussion group.

    Has he progressed from letter obsession to reading yet?
  8. SRL

    SRL Active Member

    I'll claim the disclaimer too! None of us would presume to diagnose, but given your description it's a good place to start your homework.
  9. buddy

    buddy New Member

    well, I guess I have not much to add because when I read your post I thought autism spectrum too. He sounds very high in many areas and before you panic, there are many people with autism and even some parents here on this board have forms of autism. I know what you mean about the explosive child.... It works wonders in some ways but for me, with a child who has language issues when it is not his agenda/his high interests, problem solving etc. does not really work. The parts that did work when he was young were to prioritize the problems and to only focus on certain basket items at a time.... It really did reduce overall stress in our home and his behaviors improved overall.

    Funny around where I have worked, for a long time it was much easier to get an educational label of autism spectrum disorder than a medical diagnosis of any of the Pervasive Developmental Disorder (PDD) (autism) labels. But in MN we also have a higher incidence and it is felt that is because we do identify more kids... (so I have read). We dont know where you live but even within a state there are differences... as TeDo can attest, her son was mis labeled in general and the school did not want to switch readily though the real diagnosis was Autism Spectrum Disorders (ASD) and they too are in MN.

    The important thing is to find a place that can help you sort through this and do not assume any psychologist or doctor can diagnosis this. General peds and psychs often will deny autism if kids are very verbal and try to be social at all. You need to find a clinic that specializes in the full spectrum of autism to make sure if this is a possibility or not. Though it is hard to hear if it turns out that it is the case, there are many many therapies that are research based and really good progress can be made. Much better than not knowing and trying things that not only dont work but can make things worse.

    Here are the things that sent up red flags for me:
    1. very rigid
    2. high interest in numbers and letters/early mastery of these
    3. poor social skills with peers
    4. tone and speech issues
    5. anxiety--HUGE in autism... (also some kids with autism look ODD and ADHD)
    6. expressive language/communication issues when given an open ended question or asked to expand on things or to have reciprocal conversations.

    any other concerns? Is he sensitive to textures, smells, tastes, touch, sounds? OR does he seek out textures/touch, smells, sights, sounds, tastes.... some kids are very limited in what they will eat or can't handle smells like whole places (my son could not go in a gym for a long time and will fall apart if someone had coffee breath). Does he have any repetitive behaviors?

    when he plays is it limited to the same kinds of things over and over??? does he have imaginary play or is it more imitative or lining things up and/or collecting things? Does he have other big interests along with the letters/numbers/reading/math thing? does he prefer routine or does he have difficulty changing from one thing to another (esp if a preferred thing to a non preferred thing)...and by difficulty I mean meltdowns etc.

    I think you are right to look for a neuropsychologist or at least a children's developmental clinic...just make sure they have a wide practice not just mental health....(if mental health is an issue that is great but kids with Autism Spectrum Disorders (ASD) can mistakenly be labeled other diagnosis as we said before.) If this does not fit at all no worries, remember we can't see him or you and only can go by your post... smile! In any event, you are right, you found a place where we really do understand how hard it can be. Let us know how your evaluation progress is coming along!
  10. lostinthewoods

    lostinthewoods New Member

    Wow. Thank you all so much. This is all so, so helpful as we begin this journey. He was initially evaluated by an Occupational Therapist (OT). I'm not even sure if they look for Autism Spectrum Disorders (ASD) or just ADHD. No one has ever even mentioned Autism Spectrum Disorders (ASD) before, but your words and thoughts make it clear to me that it needs to be on the table as something we explore.

    My boy is sensitive to smells, and won't eat foods with certain textures. He also has this weird fear of paper napkins, tissues, and toilet paper. He refuses to wipe himself with any of them. Very fearful he will get dirty. He won't even touch a used tissue. He is also sensitive to loud sounds and if people talk too loudly or clap, etc. We have always found this bizarre since he is super noisy--talks in a loud voice often, screams, yells, loves making any kind of loud noise. He does some imaginary play, but his sister usually leads this. Aside from numbers, his favorite toys are blocks of any kind. He is a creative builder, though symetry is often his primary focus.

    From all I have read it sounds like best course of action is to get private neuro-psychiatric evaluation, Occupational Therapist (OT) evaluation (done) and Speech Language Pathologist (SLP) evaluation. He did do speech therapy for almost a year, but was never given a full evaluation for issues like auditory processing. From there, it sounds like we will want to begin the first steps toward getting the school district involved. I will certainly be looking to all of you warriors who have been there, and appreciate all of your advice and guidance.
  11. SRL

    SRL Active Member

    I always tell parents to ask around for the best diagnostician in their reqion. Sometimes that is a neuropsychologist, but it may be a different specialty area or clinic as well. Check with your pediatrician, and ask around for recommendations from other parents. You may also want to check to see if there are any Autism Society of America chapters in your area and if so, email the contact person to inquire.
  12. TeDo

    TeDo Guest

    With all of those sensory issues, I sure hope the Occupational Therapist (OT) evaluation showed them and explained them AND gave ideas on how to work on them. If it didn't, you need a better one.

    by the way, you are STILL describing my difficult child 1 to a "T". You have a game plan now. Keep us posted as you travel down the RIGHT road!
  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    An Occupational Therapist (OT) can do therapy but can not diagnose.

    I would do the works, but focus on the neuropsychologist. He can get info from the Occupational Therapist (OT) if he can't test for sensory issues himself. My son had and still has sensory issues and he did see an Occupational Therapist (OT), but she was not the one who diagnosed him. She just did excellent legwork to help him. It's like a speech therapist can help with speech, but can not diagnose any disorders. Here is an online test that my Autism Spectrum Disorders (ASD) board friends (another board) feel is quite accurate for Autism Spectrum Disorders (ASD) if you answer the questions with honesty. Aspergers is a little harder to catch on the test. Maybe take it and see what it says:
  14. InsaneCdn

    InsaneCdn Well-Known Member

    He's a bit young yet to get a FULL evaluation for auditory processing... if there is a serious language processing issue, they may be able to catch it now - and certainly worth catching as early as possible.
    But... if they don't find any auditory processing issues... make sure you find out which ones they tested... Some of the APDs can't really be tested for until the child is 7 or 8.
  15. SRL

    SRL Active Member

    If you mean an Occupational Therapist (OT) shouldn't be the one to diagnose or rule out Autism Spectrum Disorders (ASD)'s, I'm with you there, but I'm not following you with the rest. Occupational therapists can diagnose within their field. That would include issues within such areas as sensory processing, apraxia, motor skills, swallowing problems, ability to carry out daily life tasks, etc. The medical community as well as insurance companies recognize these as valid diagnoses, as they do with diagnoses given by certified speech-language pathologists, physical therapists, etc. A major part of their classroom education and fieldwork is devoted to the use of assessment.
  16. HaoZi

    HaoZi Guest

    With the toilet paper problem, have you tried him on baby wipes or wet wipes? Sometimes they'll use those, just check to see if you bought the flushable kind or the kind that need to be put in the trash can. Kiddo and I are both Aspies and we use wipes, it eliminates a lot of problems in our household (pardon the pun!). Different brands/types have different textures and scents so it may take some experimenting to find something but it's worth a shot.
  17. buddy

    buddy New Member

    Yes, that is a good point. It is important to know that each person does a diagnosis in their field of expertise. As therapists we are trained to administer and interpret tests and to pull together assessments and give a clinical diagnosis in our field. PT, Occupational Therapist (OT) and Speech Language Pathologist (SLP) use the same dsm codes for insurance as any other medical profession. Within your profession you are trained and certified to administer standardized tests... neuropsychologist is not qualified to fully interpret tests in every field just because they are a neuropsychologist. They dont have the education to fully understand all of the motor or communication disorder possibilities that the results from testing in those areas can suggest. Their testing can suggest that there should be more investigation into the areas but if they miss it, that does not mean there is NOT a problem. As much as I love neuropsychologist for the general picture I actually have experienced people who suggest that a child does not have a language problem from the more brief parts of testing and subtests that they use which provide a small focus on those areas when as we go down the table I have to share that the more in depth testing has shown differently. it is important to have all of it done if you are at a loss in any way as to what can be affecting your child... things may be subtle and the beauty of using such an in depth team approach is that people can share from each of their perspectives and it can then be all pulled together. You are the boss of the team, the one who is hiring all of them to share their pieces of the puzzle so you can pull it all together. Neuropsychs are good at that so that is why many will say to have Occupational Therapist (OT) and Speech Language Pathologist (SLP) do their testing first so they can see those results and help you see how it fits with the other parts of the assessment being done.