Special Needs

Overwhelmed and confused...

Hi there!  I have posted on here a few times, but not much.  My DS is 17 months old and has many issues but no diagnosis yet.  He has major sensory processing issues, and does not eat because of them.  He also has speech, fine motor, and communication delays.  It has also been mentioned that he does not "play appropriately" or approach other children in a socially appropriate way.  These are just his "behavioral" issues.  He also has the following medical issues: major GI issues, reflux, multiple food allergies, sleep issues, etc....

He is now receiving early intervention.  We see a developmental specialist, speech therapist, is on the waiting list for OT, and getting evaluated for a feeding clinic.

Sorry for the long history:)  My questions and feeling of being overwhelmed stem from not having a diagnosis and all the things I am being told to do.  My service coordinator is recommending I try to get state aid called a deeming waiver (called something diff in every state) and sent me to a conference on autism.  None of his therapists have mentioned ASD, and I feel like maybe he is too young for that?!?

Anyways, this may not make sense but I am just so overwhelmed!  Do I need to push for a diagnosis?  If not, what do I do other than go along with ok early intervention?

Any suggestions or thoughts are so appreciated!

TIA:) 

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Re: Overwhelmed and confused...

  • I don't personally have experience with ASD, but several of my friends do. You can get a diagnosis this early. I would schedule an appt with a neuropsychologist to get an eval. Do you have insurance? If so, you will need a referral from your ped. The earlier you get this diagnosed and treated, the better. They really stress the importance of intervention early on. Good luck!
    Child #1: 6 yo DD Child #2: 2yo DD
  • My son has a variety of developmental delays and has been in therapy for a few years now.  We still don't have an official diagnosis.  While it is possible to get and ASD diagnosis this early on, my feeling is that the more important issue is to ensure that your son is getting proper therapy for his symptoms/issues.  Autism manifests in such different ways for each kid that there is really no one course of treatment that works for every kid.

    I was not satisfied with the early intervention services we were getting (primarily the speech) so I took him for a private eval with an SLP.  That was the best money I spent b/c she figured out that DS has apraxia, and we started seeing her for speech therapy.  We also started private OT as well.

    We just saw a developmental pedi, and he still couldn't make a diagnosis (and Z is 4!).  He did saw we are doing all the right things therapy-wise, so we're just going to keep doing what we are doing.

    BTW, whether you need a referral for insurance depends on the type of plan you have -- our PPO does not require them.

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  • Friend,

    I am in a very similar situation.  My son is 10 months old and is delayed in many areas, has 11 specialists, and no diagnosis/prognosis. 

    We have ups and downs:  Just recently, we began sleeping through the night (hooray!).  This past week, my son came off of all of his medication (that was experimental to see if they could make a difference -- it didn't) which is GREAT!  He wears a helmet to help with his assymmetrical head and face, and we were told he will outgrow it in a few weeks (which we so look forward to!), and then last week he was fitted for a brace for his scoliosis (which is sad because it inhibits him feeling me hold him or blow raspberries on his belly).  They say he may wear it until he is done growing ... at the age of 16. The list goes on -- both good and hard. 

    Our thoughts sometimes wander and we find that we are thinking of what he won't have, or how our expectations will never be realized.  But we now know that nothing is set in stone when it comes to medicine.  When he was first admitted at 4 months, doctors just shook their heads and covered there mouths to suppress what they were thinking.  My son never woke, was a poor feeder and was very low on the height to weight ratio.  (My heart aches as I type this).  However, he has made HUGE strides -- to everyone's surprise and delight. 

    There is much work to do, of course.  And the list of to dos and appointments is exhausting with no end in sight.  But, I take comfort that his list of concerns is getting smaller/more focused, and each week he makes gains in his progress.  One thing that helps is my spreadsheet that helps me track his progress and appointments.  For each week, I track new things he is doing so I can see how far he has come.  I also track where he is supposed to be (based on emails I receive from baby websites) so I am realistic about his capabilities/overall development/and what to look forward to. 

    I love my little buddy and he smiles (a lot) every day.  How does he do it?!?  The smiles keeps me going.  He has not idea that he is causing any sort of fuss or that life is supposed to be any different! :)  Also, I find that the EI therapists and all of his doctors/nurses treat him so special.  They smile at him and hold him and tell him what a special person he is.  

    I hope this helps you in some, if only, small way.  Friend, know you are not alone.  There are many people like us as our doctor told us that only 10% of patients actually get a diagnosis.  Focus on what you do have, and try to find some time for you to do the things that you enjoy -- if only 30 minutes a day.  It really helps.

    And, I'm happy to continue our conversation as there are definitely some days that are harder than others.  Feel free to reach out any time!!

    KB

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