we’ve had a rough summer with this one.
its hormones or its something else, but whatever it is we need help.
she is mostly unhappy, whiney, and cantankerous. cantankerous is actually the most perfect word for her this summer.
cantankerous.
so we are going to see a neurologist, which we should have done 2 years ago, but other stuff came up and it was put on the back burner. (her burn injury and physical healing that was more important) i am hoping to learn more about what makes her brain work the way it does. we have no diagnosis for her, only the symptom of mental retardation. and that has been okay for a long time. but im wondering if there is more information out there for us now. seven years later.
if there is, awesome. bring it. something to fill the questions in my head. questions i dont let myself dwell on very often. just sometimes…ill see an 11 year old girl. and realize that this pre-teen gangly thing could have been my daughter. and it makes my heart ache. its the most empty feeling. we will never know her like most people know their children. most of her mind is locked up somewhere high on a shelf in a closet in the back room of her head. someplace we cant get to.
if there isnt a new answer, we will be okay. nothing will have changed. and as they are, things are pretty good. right where they need to be.
awwww tara.
she’s so lucky to have the two
of you who love her for who she is.
she’s so beautiful. i hope you find your answers and that you can reach your sweet little mkenna and know her more.
tara
Our oldest son is 16, we can share you frustrations of the not knowing, no diagnosis, not understanding the way his mind works. We’ve been looking for answers for years. I will be keeping you and your family in prayer!!
I just want to admire you for being honest. I love the way you write and the way you put your true feelings out there. That photo captures her so beautifully. I can’t imagine how frustrating it must be for you. Parenting an 11-year old with hormones and no neurological issues is challenging enough so I cannot begin to put myself in your shoes but I will be thinking of you. You are a wonderful mom & she is blessed.
thinking of you and praying that the dr’s visit will go well and answer some of those questions you have.
big hugs to you Tara. I admire you for your strength and patient heart. thank you for sharing your thoughts it has made everyone stop and take a moment to appreciate the special things in their lives… just as you have with your daughter, she is a wonderful gift…
Tamara
Tara – you humble me in ways i can not express…i only wish i am half the mom to my two teenagers that you are to your whole gang….Christine
You may not know her like you know your other children, but she knows YOU. And her Daddy. And her brothers and sister. She is wrapped up in all of it. You have made for her this wonderful bubble of love; she can feel it.
oh my goodness, all of these COMMENTS has moved me to tears!…you are so right, people are wonderful.
(((hugs))) and many blessings to you…
I am not a poster, but she is definitely with the right family. Good luck at the doctors, and she has such good luck to have you all. May all that she can be, be. Because it will make you all what you can be. I always knew I was blessed, but sometimes it takes someone else to remind me, thanks for your honesty.
Thank you for your honesty and openness. I usually read blogs, look at the pretty pictures and move on to the next one. But this post made me come back a second time and it may not be the last.
While I can’t really add anything new to what has already been said, I think it is worth repeating that this post shows your character and your strength and determination as a mother to love and understand and value your child as much as is humanly possible. Without knowing you, you can sense it in your words and you can see how loved your daughter feels just by looking at that picture.
Answers or no answers, she is blessed to have you as her mom! Thank you for making me step back and appreciate my son a little more than usual and to cherish the blessings I have as a mother, taking the good with the bad and moving on.
The greatest gift I have ever been given is the lessons learned from the ahtletes of Special Olympics. They have taught me the value most of us take for granted in each and every day. They have shown me how to love unconditionally, to accept who we are and how to thrive and succeed in simple ways…the ways we all should. Maybe this would be a good outlet for your daughter….it is such a wonderful organization and you are such a wonderfully supporting family.
Perhaps she is not “normal” — whatever that is — but cantankerous is very typical for a girl her age, so in that sense I think she may be exactly normal. This is a tough age for most girls regardless of their intelligence.
But of course you should look into everything that might help you understand her better, or might help her be better adapted to the outside world. We didn’t do that with one of my sons, and although he is happy and successful now, we had a few years that were much tougher than they needed to be.
It is difficult. to not understand what is going on in their mind. i work with a 12 year old girl- one on one at the elementary school.she has no diagnosis. they say she has characteristics of Autism. but there is much more that they can’t figure out. she flips her moods and its hard for her to get out of them. OH and i know her hormones are flying so it might be a lot harder this year. I’m only 19, so i don’t have as much experience, but i wish too, just like you- that i could unlock that hidden area to see exactly what is going on in her little mind.
My heart is just breaking for you :( Being a mommy is one the best and hardest things that has ever happened to me! :)
We all have our worries and our concerns. It seems like you are handeling yours fairly well. I wish there was something I could do for you. Your family is in my daily thoughts and prayers Tara. Best Wishes!
The life journey of a special needs child really is a rollercoaster and I wish you the best on your journey. Your daughter is sooooo beautiful and joyful. I don’t want to overstep here, but having worked in pediatric genetics for more than 20 years, you might ask your neurologist or pediatrician to consider the diagnosis of 22q deletion syndrome for your daughter. A blood test called a FISH test can make the diagnosis (although the doctor orlab might want to do a regular or high resolution chromosome study as well if this hasn’t done before.) I hope raising this doesn’t cause you undue worry, but her beautiful little face and her story remind me of many other children with this diagnosis.
Feel free to email me if I can help..or if you have questions. >
I hope you get some answers. She is a beautiful girl.
just sending you hugs, tara. lots and lots of hugs!
Sweet Tara. As the mummy of an Aspergers/ASD 6yr old boy (diagnosed in the last few months), I now only too well the need for answers. I was relieved to get our diagnosis, it gave me answers and justified *SO* much. But at the same time, filled me with a hollowness and emptiness I wasn’t ready for. What ever the outcome, you are in the right direction and any answers you can get can only be good. You truly are an inspiration – I have come here to read and put a smile on my teary face many a time. She is such a lucky girl to have such wonderful parents who would give their everything to help her. Thank you for making me feel like I am not the only one who can feel this way. I just *LOVE your work :) You are one cool chick.
Wow this is why you blog!!! I was even blessed by everyone’s response and love towards you and your family. I am soooo happy to see that there are still wonderful people in this world and someone is watching over you and speaking through others. I will be thinking of you guys!! Rhonda
Hi Tara,
I know how you feel. My undiagnosed, developmentally delayed daughter just had her 20th birthday, and it is with such mixed emotions that I celebrated it. We love her so much for who she is, but there is always the reality check every time I meet someone her age. I’ve decided it isn’t wrong to mourn the “loss”, but I’ve also learned to celebrate the unique, subtle beauty that is found just below the surface – that surface that is not quite normal… If anyone takes the effort they will find it. We are fortunate in our life that many people do, and I hope Mackenna continues to have great people who celebrate her uniqueness.
Tara, First of all thank you for being so honest on your blog. I can only imagine what you’re going through but wanted to give you the other side too. I am lucky to have a nearly 11 year old girl and the past year has been one of ups and downs and it was hormonal. She started her periods about 4 months ago and since then has calmed down a bit. I think at that age they are going through so many hormonal changes anyway and I’m sure Mackenna will go through them just the same. I hope you find some answers and peace.
I read your blog a lot. I feel as though I know you and your family through the little snippit’s of information you post with your photos. I am stunned by how honest and real this particular post is. It’s inspiring. Your heart is on your sleeve where everyone can see it and what a beautiful heart it is! I am in awe.
Tara:
I also am quite the blog stalker, I read your post and just couldn’t help the tears. My eldest son, 12, has autism, our middle one has minor speech issue and our baby- who is actually 2 and not really a baby, has all the red flags for autism- reading your post hit and hurt my heart, only because I know someone else out there is so scared for a future for someone you love with every ounce. Also and importantant note: My son, JP is making me crazy! Love him and all, but I need to borrow your word, cantankerous, that sums him up and me too! Thank you for all you do for so many- Heather
I check your blog out often and find you to be amazing and extremely talented. My thoughts and prayers are with you and your daughter. I hope the neurologist is able to help you and give you the information you need. Good Luck.
Hey there,
so many other posts, not sure if you will even read this one. but I had to reach out and say a little prayer.
my 11 year old girl has high functinoing autism. i know you guys used to have autism as a dx too. hormones, yeah, probably. it is pretty likely that she is experiencing “normal” hormonal changes and dealing with it just as badly as other 11 year olds.
its so hard, wondering the what ifs. what would she have been like, if not…
one thing i know for sure, she has made me a better person and changed everything that is important in my life. Not in the regular becoming a parent sense… but in learning how to work with her, react to her, teach how to make sense of this world and the crazy (and mean and cruel and wonderful and puzzling and brilliant) people she comes in contact with.
good luck with the new doc. i hope you find some answers.
Jen
Thanks for sharing that, Tara. I have a 3 yr old boy with PDD-NOS. I dropped out of our playgroup because I couldn’t handle another day of seeing his friends talk, fight, have secrets, play and interact…in a way I think he never will. It is like a little death. But it doesn’t change the child you have in front of you, who you love to pieces.
She’s beautiful! As are all of your children. I wish you all the best for unlocking some of those mysteries!
I am a lover of your photography and mostly lurk on your blog. This post urged me to leave a message. She is such a beautiful child. I am no expert, but I used to work in Baltimore, Maryland for a non-profit agency Progressive Horizons. I loved that job more than any I have ever had. I worked with 70 developmentally disabled adults; coordinating and tracking their medical and dental care. I read their files from front to back until I had memorized them. Each person had a unique story and symptoms. My Boss believed that they should live in the community and be socialized to their fullest potential. There were dances for different age groups and I learned so much. I hope that you are able to find some answers. I beleive the loving family you all have is the greatest gift to her. In Baltimore Johns Hopkins Hospital has a wonderful neurology department and many adolescents go to the Krieger Institute for testing. I love the photo you shot of her beside the sign and I love her long legs. She is an angel.
I’m a blog lurker – I like to look at photo’s from other people and I came across yours. I’ve never commented, but I felt a need with your post.
My 8 year old son was recently diagnosed with Tourette Syndrome. It’s hard on me, because I see him and what he goes through. All I can say is ‘don’t give up. Don’t give up on your little girl, she was given to you for a reason. The reason may not be apparent now, but you’ll know. Don’t give up on her assessment, there are jillions of dr.’s out there and maybe the one doctor that can help is a phone call away. If your daughter is happy, then you’re doing good. Keep the faith!!
I love reading your blog, and after reading this post i love it even more. How lucky is she to have such a great mom and family? I can’t imagine the struggles you have to deal with, but you make it seem effortless. Sending your way love and hope that you find what you need.