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Mom in Uncharted Waters
Navigating Family, Food and Special Needs
Navigating Family, Food and Special Needs
I have a special needs daughter that is 20 years old. I too live in Texas. We had an early childhood program called Project Tykes. Then she was put into regular elementary school at 3 in a program called Preschool Program for Children with Disabilities (PPCD). I still have no medical terms of what is Brittanee’s issue. She’s got a 53 IQ. She does have a deletion in Chromosone 1 although they can’t tell me if this is what lead to Brittanee having a disability. Anyway, why I’m writing to you is to tell you Brittanee is my greatest gift. She decided after high school she wanted to go to college. She’s in her 2nd year at Houston Community College VAST program. She also wanted to live in a “dorm” like her brother and sisters. We found “The Center” in Downtown Houston. What a wonderful place. It was very hard to let her go…when I did she has grown and flies high! I couldn’t be prouder of her. She is a place that accepts her as she is. She has friends. She rides a city bus from The Center to HCC and back on Tuesdays and Thursdays. She has well exceeded everything the doctors said she would. No, special needs children don’t have a book as does any child…. and they don’t have a limit either. I tell my beautiful daughter she can do anything she wants to do…. Thank goodness she doesn’t want to be a brain surgeon!
Hi Joni! Thank you so much for sharing your story with me! Brittanee sounds like an amazing young woman. We are in PPCD right now, and hoping to delay kinder for a year. We recently had an assessment with a pediatric psychologist and I wanted to know what Lucy’s future might look like. The bottom line is that we just don’t know. I so agree with you about not limiting our expectations. The great thing about not knowing for me, is that anything is possible. Congratulations on all of Brittanee’s success. I hope in 15 years I am sharing a similar story with another mom. Your story is a great inspiration to me, and I love that I can just feel your love for your daughter right through this screen. Take care
Meredith,
Yesterday after I emailed you I decided to actually read your blog… LOL I went backwards. My goodness….what emotions I felt. I have experienced all the things you described although I never really shared them. I remember going preparing myself for ARD meetings in elementary school, staying up all night wondering what “new” issue Britt would be revealed to me. I would vomit before I left to go EVERY TIME! I felt like I was in a firing squad. I knew I would have to fight for her EVERY TIME too. Brittanee’s teach in PPCD gave me the best advice ever and I have never forgotten it. When she scheduled the first ARD she asked me to come in so she could explain to me what would be happening. Ms. Randi was an angel. I cried on her shoulder (litterally) more times than I can count. Anyway, she explained that the administrator and speech therapist and physical therapist, etc, etc would be in there with all their evaluations. Giving me all kinds of information and advice on how to raise my child and what to expect from her. (Just a little background I have 3 children older that Brittanee – the oldest is 13 years older) Of course in my infinite wisdom I told her I knew what I was going to expect from Brittanee – EVERYTHING. She agreed and then proceeded to tell me that I will learn to be her biggest advocate, that I am the only one who truly knows her. That each of these people only spent minutes a week with her and truly can’t evaluate WHO she is or WHAT she can do. The can only offer suggestions. Sooooo… in that few moments Ms. Randi gave me my fighting gloves and boy have I used them. And continue to use them whenever necessary, although now Brittanee fights for herself. She knows she’s different, she doesn’t care if anyone understands it or not. She’s happy with who she is. I learn from her regularly. Lucas and Brittanee are so very similar in so many ways. Brittanee has strabismus too except she wouldn’t wear the patch, at 13 months old she had surgery and never had eye problems again…. Sorry I’ve written a book…. just know that Lucy has the universe in front of her, the sky’s the limit and with you being her Mom (her advocate) life will be so rewarding for you both! Have a great weekend.
Boy…after re-reading what I wrote I guess my emotions got the best of me.. I should have proof read. Sorry about that!
(just fyi Lucas is my son – I meant to type Lucy)
Joni, I totally understand. I’m so glad you went back and read some of my other posts! It certainly has been a very emotional journey for me. And it has gotten easier with time, and with discovering my own power as a parent. I am so glad to hear about Brittanee. It is very encouraging and inspiring to hear from a mother who has been in my shoes and is looking back now. Thank you <3