A bit overwhelmed with everything

mightmom13

Hi there,

I had posted a few times before about DD - I have a genetic miochondrial disorder, she has speech delays (in EI), and her overall eval wasn't super except for cognitive was pretty much right on cue.

Had the PT evaluation Tuesday for walking, core strength due to lower tone and she will get that a couple times a month for now.

I had my genetics appointment on Wed, so I took her and the doc listened to her history and agreed she needs to be tested; so urine bag and blood draw, follow up in 6 months. He said it could be mild or more severe, you never know with mito, than what I have which is controlled by diet and one med.

The 18 month well visit was today and came away with: failed MCHAT and failed MCHAT followup questions - so developmental ped appointment ordered to see if she is on the spectrum or if behavior is due to her development issues which may be a genetic issue result; a swallow study for her eating issues/possible aspiration; blood test to be drawn for milk allergies; and estrogen cream therapy for decent labial adhesions.

I thought I had prepared for this better, but hearing everything and the suggestion of developmental pre-school (I know he is just a reg ped) is a bit much. Just the way he talked about her delays - special dentist, pre-school, the suprise at where she is at for her age from him, and that he said the "what to expect" the next 6 months may not all apply to her.

Also when asking how I was with everything, it became apparent that my mom sees autism or it's possibilities the way society does - the silent kid in the corner who doesn't hug anyone. She is also picking up more behaviors that can be common of spectrum - tip toe walking, spinning, etc and my folks seem more annoyed than concerned. Any tips to help them or me better understand everything? We live with them so it is pretty important.

TIA and thanks for reading. I hope the way I put things that I didn't offend anyone, at the beginning and don't know a lot about this.

BunnyCookie

do your parents know that these behaviors are common for the spectrum? i'm sorry that they're not being more sympathetic.

i don't really have any advice--just want to say that i'm sorry you're dealing with all of this. 

mightmom13

BunnyCookie:

do your parents know that these behaviors are common for the spectrum? i'm sorry that they're not being more sympathetic.

i don't really have any advice--just want to say that i'm sorry you're dealing with all of this. 

I think they don't get the whole spectrum part of it. I think they see autism v no autism; I tried to briefly explain to deaf ears but there is just so much going on. I thik they are a bit freaked out too with everything. But still, and thanks.

mightmom13

auntie:

This sounds like a difficult situation.

There are certain people on spectrum who do have mito disorders. There's some discussion of whether what they have is truly autism even though the presentation and tx are the same for the most part.
A lot of parents react strongly to a grandchild on spectrum there's a mix of denial and sadness that they and their child will be denied the typical growing up experience. I'm sure there's some guilt given that their own child has a mito disorder which complicates it all. Getting them to acceptance may be a challenge, especially if they do not see you as an independent and capable parent. Since you live with them, I'm guessing they may be partially correct at this moment in time. Why do you live there? Are you a single mom? Do they provide childcare while you work?

I have read up on mito and some of the research with the connection or presentation of autism.

I am a single mom who works full time, 12 hour shifts at a hospital so they do get her to and from daycare on my shift days. Also there is some safety concerns with my XH. We were on out on our own a couple months prior to all this. Capable from an age, stability standpoint and even pay rent; but they do have some care responsibilities on my work days. I stay home with DD the other days.

My mom is not a think before she acts/speaks person, thinks she knows best because she is MY mom. My dad does back me more and tells her to back off when things go too far.

So maybe the developmental ped appt bring along is a good idea, but the rose colored glasses will be tough to take off of her.

Thank you for your response.

malcivar

-auntie-:

Normally I would suggest including them on her appointments and allowing the news to come from the professionals. Older people are more likely to believe what a physician tells them that their own child. At the very least, bring your mom to the deve pedi appointment and school appointments.

First off - {{hugs}} - single mom handling all this - girl you are superwoman!  Second, I agree w/ auntie.  My parents had the experience of raising a special needs child (my twin sister) but my dad has NEVER handled it well.  As I too work full time, they've cared for Chris since he was 3 months old and when we started with EI, it was them that had the most contact with the therapists - the professionals.  It's made a world of difference.  They take everything seriously and have stopped with the "there's nothing wrong; he'll come around".  Granted, it still hasn't helped with my dad/sister relationship.  I think for him it's easier to accept that his grandson has "issues" than his own child but they're on board with recognizing - pointing out new behaviors - and being involved in helping him.  

I think maybe your parents might benefit from being involved in the process of getting help if an ASD is what it turns out to be.  

Good luck! 

mightmom13

Thanks - I am no superwoman because I take too much on myself, however, I don't have a big choice on that right now. I am there during all her therapies and home practice - which gets really tiring. My parents do listen to me when it comes to correction/practice things (no mouth, making her say something before giving in - most of the time). My mom is a bit of an enabler, but my dad is very laid back hands off but observant.

I may have them there during the - here's what we found out/think part- not the actual eval appt. Speaking of is it generally like that - evaluation/play then they talk diagnosis?