New here....waiting on a diagnoses for daughter (REALLY need a pep talk and support)

I posted this in another group before I found this one. I think it belongs here instead...

My daughter, Penelope Rose of course is the light of my life. She started talking at 4 months old and started reading not much later. At 19months old she can currently read well past the 1st grade standardized levels and knows all her shapes and colors..oh and she talks in full sentences...

EVERYONE sees her and automatically assumes that she is perfect...but she isn't. Aside from the digestive issues that she's had basically since she was a few months old she is starting to exhibit repetitive behaviors. I see her sort of drift away....as if she is leaving her body and taking a little trip for a few moments and her eye contact...is getting less and less.

I started her on a gluten free diet 48 hours ago and I see INSTANT results...but here I am...questioning literally everything possible and I feel like everything is spinning around me and I can't catch my breath.

I need a pep talk, I need honesty, I need someone to give me advice...I just NEED right now you know? I spend all day (every second of the day) asking myself what can I do next to help her.....I keep a journal of everything I possibly can. Going back and reading through some of the worst days and then reading the better days is really helping me but I just......need to hear from other people that this isn't the end for my baby..that I'm not going to "Lose" her

  • Beautiful little girl.My son had severe digestive issues,seziures,and reflux,chronic loose stools.Defenately,gluten free and casien free diet can help.Adding EFAS.All natural foods.May want to look at the GAPS diet.It is helping lots of kids.Early intervention can make a big difference.The earlier the better.If she has sleep issues,melatonin may help,an hour before bed.Passion flower may also help in the daytime,if she meltdowns,and tantrums.Flourescent lights can be a big problem for many kids.Mine are severely sensitive.If you want to talk,just let me know.Kind of late,i`m going to bed,but will be back on later.Welcome.
  • Welcome to the site. Yes she is a beautiful girl. Don't worry too much about what hasn't happened yet - cos it still may not. Just focus on what you see happening. Quite likely you have a beautiful HFA child there who will cause concern as you make sure that she gets all the help and support that she needs. She'll also be a great source of delight.
    I think getting a diagnosis sooner than later is best.
    This isn't the end.....it's the beginning and you'll both be ok
  • Hi ya welcome to ASN nice to meet you ,Your daughter is perfect in fact she is more than perfect she is unique ,I had struggles all my life ,My son has struggles but i wouldnt wanna be anyone else im me and i would not want my son any other way because life is not about all negatives its about all his positives ,Ok so there is things he cant do but there is 5 more plus that he can do ,Now that other people are focussing on my sons talents and positive things he is acheiving so much and he is shining his future will be bright .We did not have the best of starts he was treated very badly and that still hurts me in fact i sat crying last night reading some of his old school reports as i now see how iggnorant and horrid those teachers were to my boy ,but in a year my son has acheived so much because he is accepted for being him he is understood and loved for him .
    Also i am being accepted i am being understood and that makes me happy i feel i now have a chance in life i feel at last people like me for me ,I am getting praise not abuse ,people see my positives not any negatives .

    Whatever happens if you accept your daughter just the way she is it will keep her safe and happy ,so what if she dont look people in the eye its not a big deal i dont look noone in the eyes and im 30 dont mean im not listening im just doing it in a way i feel comfy .So what if she goes into her own world i do that too alot always have done if thats what she wants to do and she is happy then thats all what matters .

    Your daughter is totally gawjus ,no way is this the end no way will you lose her ,there will be times when things are hard there will be struggles but the love you have for her means you will get through them ,you will fight for her and she will blossom ,All we need as autistic people is acceptance and understanding it makes a big difference .Dont be sad be happy that you have created such a beautiful little girl and a very unique little girl who will bring you so much joy and happiness xx
  • Hi,

    How old is Penelope now? If you are after some actionable advice, check out: parentsempowered.wordpress.com for some handy tips on how to better interact with Penelope.