Posting again, hard parenting day feeling ashamed of myself

[faithsstuff]

I want to thank everyone for their opinions a few weeks back on what to say to our ped, as a result we have a ped nuero appt in March.  

We've been waiting for ds' eval through the school system hoping he can start pre-k and get some of his OT and speech there.  I took him to the required hearing/vision screening and he didn't pass the hearing in either ear.  It was the OAE and I understand it could only be fluid in the ear, he's never had an ear infection or anything else, so I hope it was fluid.  The ped office faxed the form to the school district and the school system turned us down due to the hearing results (if it's fluid and we have it taken care of they will revoke that judgement).

At our first full OT appt the therapist was very dismayed at ds low level of auditory processing.  Ds talks to us, sings songs etc, I never thought there could be a hearing issue.  After the hearing screening our ped demanded to know why, with his speech delays, I hadn't had his hearing tested after the newborn test (which was fine).  I wanted to know why the ped had never mentioned it.  

I feel like a failure.  I'm so very tired.  I don't know how to navigate the medical community, and I feel like I'm being picked apart.  I've known there was something differant about ds for a couple years now and have not been shy about sharing my concerns.  I just, lol, I guess I'm just really exhausted.  And to be honest I'm angry.  Angry at the ped.  Angry that the OT dismissed my concerns about ds sensory meltdown after that first appt.  I'm angry that my little boy needs help and I don't know how to give it to him.  I am so angry at myself for not being the mom he deserves.

I feel like I may be seeing ds for the child he *is* instead of the child I *wanted* him to be.

I can't believe I wrote that, I have to get it out.  Out of myself so that I can look it in the face and make peace with it.  Please don't flame me, or hate me too much.  I am so ashamed of myself.  

[ErinYay]

Don't be sorry- anger is a big part of the process- no matter when you start.

We knew from the time DD was 5 months old that something wasn't right. I personally am autistic and huge neurodiversity proponent, and I *still* had to go through the emotional process of *really* internalizing things. 

Don't beat yourself up for the past- there's nothing you did wrong, and nothing that can be changed. Acceptance will come, but you have to try to let the process happen. It's scary and all the different parts suck, but it's absolutely true- you *will* feel better in time.

Right now, just enjoy your child- it sounds stupid, but if you focus on that, you'll wake up one morning and think, "Yeah, okay, I get it now. This is my kid, this has always been my kid, and this will always be my kid. And I love him. And we can do this."

Hugs, mama.

(DD's 25-months, in speech, with a ped neuro appointment next month, and I still haven't gotten her hearing checked. I know I ought to, but I just haven't. And no one has suggested it, either, which really does seem negligent, but it's really not uncommon. *Please* don't beat yourself up!)

[FarmerBeth]

It's so easy not to catch on to why your child is having trouble.  All kinds of things can lead to speech delays, and it's no wonder with the first hearing test being fine that you didn't follow up further testing.  Be easy on yourself.

I was pretty angry through pretty much the entire testing process the first time around.  There's nothing more personal than your child and how you feel about your parenting.  It's totally OK to be angry at the professionals.  Just get constructively angry and use it to make sure your child gets what he needs.

I'm still angry at myself sometimes for letting too much go at times with my boys, and also still angry at the first professional I saw for blaming everything on my DH as the stay at home parent with ADHD.  Some of it's pretty justified.  So much got passed off at being due to DH's supposedly unstructured parenting (actually, he's kind of over structured because that's how he's learned to cope) based on his diagnoses, that the real matter wasn't attended to.  Stay a bit angry, mama.  It will keep the pros on their toes.

I really suggest finding something that helps with the stress during this.  For me it was loads of physical work.  I've got an acre of hand dug and tilled land right now over this year!  Do what works for you.  You need it and deserve it.

[karne]

I thinks it's wonderful that you posted here looking for support.  You have to do it.  No one can escape the feelings you're having.  It's completely normal.  The beginning, where you're at now, is so hard and so overwhelming.  There's no room for blame.  Just move forward, doing the best you can with what you know now and gather the support you need for yourself to be a loving and effective parent and advocate.  

[faithsstuff]

Thanks so so much.  I needed to read these comments, thank you.

[Emmeline II]

Originally Posted by faithsstuff 
  After the hearing screening our ped demanded to know why, with his speech delays, I hadn't had his hearing tested after the newborn test (which was fine).  I wanted to know why the ped had never mentioned it.  

You can't win .

If you do bring up concerns first you are an over anxious/over protective parent (worse if this is your first child) who needs to "trust the professionals", and if you don't then it's "why didn't you!? a parent should have known!!"

I'm still reallllllllllllllllllllllllllllly angry at how ds' first school failed him (told me "they" didn't consider ADHD before 2nd or 3rd grade and completely dropped the ball on Child Find, while using ineffective and/or inappropriate discipline for what was really going on), and a little less angry with the family therapist that discouraged us from taking ds to a psychiatrist earlier. I try not to think about the school because I can feel my BP rise; ds' current school almost makes up for that experience.

Though I want to send to the OT who was the first to confirm what I saw, and to the doctor who had only treated ds once for an ear infection but signed off on the referral to the children's hospital based on my bullet list and my offer to show him ds' stack of discipline tickets from school.

I recommended reading "Wrightslaw: From Emotions to Advocacy"; the information from the book can be found on their site as well (Table of Contents). Reading "Wrightslaw: Special Education Law, 2nd Edition," would be a good idea as well).