help....please

Replies:

• 
• by
  • mousireid
  on May. 28, 2009 at 10:34 AM

• I am sorry to hear you feeling his way - but I speak from experience when I say things WILL and CAN get better.  First, where do you live?  Ask your son's primary care provider for a referral to have a full evaluation.  OR search for available providers on the insurance website (Tricare? Humana?) and get an appointment as soon as you can.  Does he have an official diagnosis?  This doctor does not seem receptive to your needs.  There are many more services available including behavioral, sensory etc.  Is your son at school yet?  If you can answer a few q's I can try to help :)

• 
• by
  • thetrivetts
  on May. 28, 2009 at 5:01 PM

• Right now we live in WA state. There is only one developmental childrens doctor that specializes with this in our area. My hubby is working on finding one where we will be hopefully soon at Ft. Campbell. Its just the wait, not having the answers I needed and the help till the move happens. Its not an official diagnosis but his pediatrician feels that he fits autistic like characteristics based on what I was telling him. My son just got 'tested' out of special ed and is in general ed kindergarten and school is out June 18th here..there are issues with my son having sensory issues
  

  Quoting mousireid:
  
  

  I am sorry to hear you feeling his way - but I speak from experience when I say things WILL and CAN get better.  First, where do you live?  Ask your son's primary care provider for a referral to have a full evaluation.  OR search for available providers on the insurance website (Tricare? Humana?) and get an appointment as soon as you can.  Does he have an official diagnosis?  This doctor does not seem receptive to your needs.  There are many more services available including behavioral, sensory etc.  Is your son at school yet?  If you can answer a few q's I can try to help :)

  
  

  

• 
• by
  • mousireid
  on May. 29, 2009 at 10:04 AM

•  

  Okay, we went through something similar when my husband was deployed, the Summer was awful because I hadn't asked for a full evaluation from the school until it began again in August so had quite a wait.  There is hope in the fact that you are moving to a new area and hopefully Fort Campbell has better services - we have the EFM program here and then sometimes there are state recognized programs available too.  In our case however, our son was not 'autistic enough' to make the grade of full assistance with TriCounties here. 

  Have a look on your insurance website under 'new provider' in the areas you are looking for or research close to Fort Campbell for DAN Doctors or other specialists.  Most of the work we have done by ourselves.  Just remember it is no -one's 'fault'.   You are not 'bad' parents or have a 'bad' son.  if others look at you strangely (and they will) simply state his diagnosis.  We even bought some cool clothing that dioes that for us!

  So, your son has an IEP at school?  If so it will transfer with him, if not you will need to request  that eval asap! 

  There's even elimination diets that some people have had success with, chelation therapy and even sensory therapy.  There are many thing syou can do at home.  My son won't wear nylon pants, I have to let him choose his clothing by the way it 'feels' when we shop to avoid meltdowns, he wears seamless socks, he covers his ears when he flushes thetoilet opr when sensory issues are too much and he NEEDS to have some alone/down time.  We are allowed sensory 'toys' inside the classroom (chew toys, fiddle toys and group time sensory pillow).  He is impulsive, has sensory issues, has a high vocabulary and great academics (although had a rough start with fine motor wiritng skills) and the staff are continually working on .  We have a list of 34 social skills to work on and are now finally able to sit down and play a board game without him flinging the board in frustration but all these things take time and perseverance. 

  There are so many things to say but I am in no way an expert we muddle along one thing at a time!  I sure hope someone else will reply with more helpful knowledge!!!!

  But I will say this - you are NOT ALONE! 

   

• 
• by
  • mousireid
  on May. 29, 2009 at 4:02 PM

• Oh My Goodness!  I just found this website and it is PERFECT for FORT CAMPBELL:

   

  http://www.defenselink.mil/news/newsarticle.aspx?id=43573

   

  Call ahead of time and they will gather all the info you need!

• 
• by
  • amblessedwith2
  on May. 29, 2009 at 8:27 PM

• It's difficult having a doctor who will actually listen and make appropriate referrals.  Don't feel discouraged.  Has he ever been evaluated be a regional center?  You could get help from behavior specialist, occupational therapist if he qualifies.  When he was "tested" out of  special ed, did he still have an IEP or 504?  He should've gone in with certain services to help him adjust.( such as psych services).  If  his teacher is having concerns with him on a daily basis, I would ask for another full evaluation.  Do this by writing a letter so it is documented and it will also start the timeline.  The law requires evaluations to be done within a certain time frame.  It is the school's obligation to follow up on your request.

  As for the daily meltdowns, I am right there with you!  You are definitely not alone!  Try to observe him and notice what gets him agitated and what helps to calm him down.  For my son, he doesn't do well with social situations and especially shopping.  I will give him a favorite toy that he only gets when we are out, or when I see him getting overwhelmed we play "big Hugs".  This is just giving him big squeezes to help him calm down and it really helps.  Sometimes when he's in the middle of a meltdown, I give him deep pressure massages starting at his shoulders and working my way down to his hands.  This does wonders for him.  Sensory kids usually need lots of movement and pressure so play around with him and find what he likes.

  Sometimes meltdowns happen, don't feel embarrassed.  It happens to ALL KIDS, not just those with special needs.  You need to do what you need to do and if he's screaming all the way through so be it.  I've shopped many times with a screaming kid and have lived through all the stares.  Be confident in knowing what you are doing is the best for your child.  Good luck. 
  

  Quoting thetrivetts:
  
  

  Right now we live in WA state. There is only one developmental childrens doctor that specializes with this in our area. My hubby is working on finding one where we will be hopefully soon at Ft. Campbell. Its just the wait, not having the answers I needed and the help till the move happens. Its not an official diagnosis but his pediatrician feels that he fits autistic like characteristics based on what I was telling him. My son just got 'tested' out of special ed and is in general ed kindergarten and school is out June 18th here..there are issues with my son having sensory issues
  

  Quoting mousireid:
  
  

  I am sorry to hear you feeling his way - but I speak from experience when I say things WILL and CAN get better.  First, where do you live?  Ask your son's primary care provider for a referral to have a full evaluation.  OR search for available providers on the insurance website (Tricare? Humana?) and get an appointment as soon as you can.  Does he have an official diagnosis?  This doctor does not seem receptive to your needs.  There are many more services available including behavioral, sensory etc.  Is your son at school yet?  If you can answer a few q's I can try to help :)

  
  

  
  

• 
• by
  • MissRanee
  on Jul. 26, 2009 at 9:28 AM

• WOW- your story is "the why", I'm exploring this site- I've been in the field of "special needs for about 20 years.  I've worked training paraprofessionals in the field for a while as well- my heart is "what about the familes" you live this life with our youngsters in need-

  I'm not a Dr. basher- however often the understanding of how to do day to day w/ kids who need support is less than helpful and far from practical- There are SOOO MANY strategies that could help you, help your child and make the days so much more managable- my heart just aches for both of you-

  In this forum I'm not sure how to best help. other than to through out some "terms / strategies" that you can check out and see what fits your needs-

  Many children are most successful when verbal direction/ interaction is minimized during a meltdown or potential meltdown situation- gesturing or using pictures helps tremendously-  it's a difficult shift for many of us to make but it can truly help-

  the best "tools" can be a "visual schedule" and my personal favorite a visual timer- NOT using a regular timer (they can be ordered online)

  Your child also seems to clearly have senory needs- a sensory diet (nothing to do w/ food) can help your child be "calmer and better able to deal with what he's expected to do"

  There are also so many biomedical possibilities- that I do personally "buy into" however if that's not your bent- the above suggestions can be helpful in day to day!

   

   

Only group members can reply to this post.

Join Group