1st grade no diagnosis

Discussion in 'Substance Abuse' started by Amity, Aug 14, 2017.

  1. Amity

    Amity New Member

    Help.
    Not sure if this is better here or general. My son is 6 and entering 1st grade. Another school year and no closet to an actual diagnosis than when he was 3. Each year he sees all these people and had an iep because of the special needs he has. HOWEVER, no matter how many doctors I take him to I can't get anyone to say what I already know. I believe him to be autistic (high functioning). I know he stuggles with anxiety, fear of death, pain, loss and the unknown. He is smart but behind.
    I am not new to this as my 19 yr old daughter was ADD, ADHD, ODD WITH SPEECH AND LEARNING DELAYS, spent a large portion of her life on Concerta and a very strict diet (no artifical, no msg etc) now a grown woman she struggles with anxiety, depression and huge heart for those in need.
    My little boy is not the same but some similarities. He is always in need of me and that can be hard on my other kids. His brother is in 3rd grade and will need help with homework etc. I don't look forward to the battles that will come this year to say the least.
    My problem is that without the right diagnosis he doesn't get the extra allowances unless I am there to say the words. He is getting big too. This year will be a game changer and I know it. He is no longer a cute small little boy but rather a kid. One who will get picked on and not loved for his special needs that often made him scared at school (kindergarten was a class where all the kids helped him and kept him close, example if he hid under a desk, a child would join him with a book till he felt he could come out).

    What do I do to actually get help. I have dealt with the schools and with outside behavioral health centers. All they want to do is have him see someone once a week. This takes up time and money and those people never communicate with the main dr. Main dr can't be seen for 6 months, wants to see them for 5 min and say bipolar (that makes me so mad what a waste). Not saying it can't be bipolar but you can't see that in 5 min of talking to the parent while the child plays on my cell phone.
     
  2. Albatross

    Albatross Well-Known Member

    Amity, welcome. You posted in the Substance Abuse area. Most of us are parents of older children with drug or alcohol issues. Your post would probably get more feedback if you visit either the Special Education 101 or General Parenting forums.
     
  3. BloodiedButUnbowed

    BloodiedButUnbowed Active Member

    Hi Amity, so sorry for what you have experienced, it is heartbreaking to know our children need so much more support, yet the schools are reluctant to provide it for whatever reason.

    You say your child has an IEP. Is he entering first grade in the same school where he attended kindergarten or different school? If the same school, hopefully last year's teachers will work closely with the first grade team to assist them with meeting his needs.

    Is there a concern that his behaviors might be unsafe, for example does he run away when he is frightened? If so you can request a one on one aide be placed to help monitor and supervise him, if he does not already have one.

    Since from what you describe your son has complex issues that are not easily labeled, the very first thing I would do is have him seen by a developmental pediatrician. This is a very specific specialty. Your son's regular pediatrician may have a referral. You will have to wait a while for an appointment. if you call now, you may not get in until November. But this kind of pediatrician will be able to conduct very thorough assessments that a standard pediatrician cannot. Often developmental pediatricians can determine an autism spectrum disorder among others.

    The developmental pediatrician may also recommend other assessments such as neurological.

    You are allowed to ask for an IEP meeting whenever you feel it is necessary. Many parents don't realize that they are equal to the school in terms of making decisions for the child. If you know he is struggling and you end up dissatisfied with the school's response, you have every right to ask for a meeting date sooner rather than later.

    Hope this helps, keep posting, and yes, the Special Education 101 area of the site will get you a lot more feedback!
     
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  4. Amity

    Amity New Member

    Thank you. I've never heard of a developmental pediatrician that will be on my list of to dos.
    Yes same school but only for about a month of last year. I was actually impressed with how quick they were to get him going seeing as itwasthe endofthe year so I do have some positive feedback from them so I'm not all at a negative but still find myself unsure.

    His behavior is unpredictable and he often makes me out to be a lier (I am totally ok with that) about his behavior. He does hide in situations where he is scared scared. If he gets hurt he screams and losses control because he panics. He gets hyper active when he has to work really hard to handle his environment so it can look like adhd. He does walk off randomly but hasn't done so in almost a year so maybe we are done with that. Chalk that up to being a little guy.
    We do have issues with not being able to stopdoing something he likes (examples: electronics, swimming, roller skating, play ground/park) to the point of actual dropping from exhaustion. If we have to leave before he is ok the fit is physical with kicking and screaming enough to have people think I'm kidnapping my own child.
    This all comes around to some narcissistic type Behavior that has me genuinely worried. Everything for him. Everything about him etc.
     
  5. BloodiedButUnbowed

    BloodiedButUnbowed Active Member

    At his age some of that 'narcissism' is developmentally appropriate, maybe even all of it. If he seems to have no concern for others, harms others (people, pets, etc) without caring, etc that would certainly be cause for great concern.

    In any case, the developmental pediatrician route will definitely give you more answers, and they may very well suggest other specialists to rule out/in possible diagnoses.

    I am a special education teacher so I know a little about it :)

    Keep posting and hope the school year starts out right for your little guy!
     
  6. pigless in VA

    pigless in VA Well-Known Member

    Welcome, Amity. I took my son to get an evaluation with a developmental pediatrician at a Children's Hospital. Be sure to take a parent report with you. https://www.conductdisorders.com/community/threads/parent-report-updated.225/

    Later in his life Ferb also got one of those bipolar diagnoses. I recall that clinician who was well respected in our community observed Ferb for 10 minutes. She was making the diagnosis solely on my description of the family history. It torqued me off and I never returned to her. I did see my late husband manic but it was drug induced. I have never seen Ferb manic. I think clinicians are susceptible to fads and bipolar has become more popular. You know your child better than anyone; your gut is probably correct.