Amanda is 9 today, she is having fun eating chocolate covered ice cream (almond creme) and watching her favorite movies!
We will not have a huge party for Amanda, they stress her out and are not fun for her, so we will celebrate quietly.
Amanda is saying more words every day, she is beginning to shake her head yes and no, which is fantastic for her, it gives her more of a voice, she is fond of NO. Since she is mostly non-verbal, but likes to surprise everyone with random words here and there. She communicates with gestures, limited sign language and actions. We have tried many different devices and communication tools, so far none have resonated with her, we are filling out paperwork to get her an iPad to use as her communication device. Her speech therapist and we are hoping it will be exactly what she needs. We have a few speech programs on the family iPad, but since we all share it, it cannot be used exclusively for her.
She has made gains in development, but since she was so very delayed, she is still very far behind other children her age (with Down syndrome). We try not to compare, she is her own person, unique and special in many ways.
She likes to watch Barney and High School Musical, she is a huge fan of most musicals. She bounces on the couch as her way of dancing to the music, she can get pretty high in her bounces.
She adores the iPad and stresses if it is not her turn to use it, will repeatedly try to take it from whoever has it. Her favorite application is Endless Alphabet and a very annoying music program that plays golden oldies like "My Clementine" and "This Old Man", she often switches the language to French and loves hearing "Old MacDonald" sung in it. Her parents are not as thrilled with the constant music. Mommy turns down the sound and Meghan or Kara sneaks over and turns it back up, so far Amanda has not figured out how to do this. She loves to scroll through apps too, and will turn on so many she kills the battery!
We have to limit her time on the iPad because it does seem to make undesirable behaviors worse at the end of the day. (Scratching, biting, pulling hair, throwing things, knocking things off tables) We notice that one hour usage with a 3-4 hour break in between each use works best for her.
She carries baby dolls around the house and likes to lick their faces. She has favorite dolls, and likes talking toys the best. Toys made for toddlers hold her interest the most, toys for older kids often get thrown and broken.
She is taller, but still pretty thin, she weighs under 30 pounds, her doctors say she follows her own growth curve and are not overly concerned about her size, people often think she is a 4 year old.
She is silly, sweet, and autism also makes it hard for her to relate well with others. She wants to be held by most people, but often scratches them or pulls their hair, if they wear glasses, she knocks them off their face. I am so grateful to the patient people who continue to try to form a bond with her despite those behaviors. We work very hard on helping her interact appropriately, it is a constant endeavor. Some days the behaviors get pretty challenging, some days she has very few. The dual diagnosis of autism and Down syndrome is difficult for her, for us, and for our family, but we are never going to give up on her, we love the little scamp, she is our daughter now and forever.
Yesterday this grandmother and mother was a happy woman. We took care of Mathias, sweet little guy is teething with a vengeance, so not the happy little dude he usually is. We are always on our toes when he is here because sweet Manda Moo has scratched him before. Yesterday for 95% of his time here (about 8.5 hours) she just let him play and even tried to interact with him once or twice in a positive way. She did reach for him once with that special gleam that does not mean warm fuzzies...I was proud of Amanda, she actively worked on not hovering over or scaring the baby, it is a huge step for her. She will be 8 years old very soon, she is still the tiniest little gal, very thin bones and long thin muscles, but healthy, thank goodness.
Kara, oh boy, has decided she needs to push Mathias down repeatedly, when he is here, he gets the sibling treatment; as every single one of my toddlers pushed their younger sib down once they learned to walk. I wonder what makes them feel they need to do it? Maybe that newly walking baby is just getting too much attention? Mathias is a little toughie and for the most part ignores his silly aunties Kara and Amanda. He completely adores auntie Meghan though.
It is so cute to watch little buddy back up and sit on her lap. She always seems so shocked that anyone is sitting on her, the look on her face is hilarious. She adores him too, as long as he leaves her Barbie's ALONE. 12 year old girls, oh save me.
We got to see our wonderful DIL Anna and two of our sons yesterday too. It was a full day, but a wonderful one.
When I was diagnosed with breast cancer in 2003, many very sweet and well meaning people gave me items with pink ribbons on them. That did show they were thinking of me, and I was grateful, it was a pretty hard time, no truly, it completely changed who I am as a person... I had fitness shoes sold during October that were pink with little ribbons on them, and socks, and so many pins and key chains.
I went to Susan Komen walks and wore that pink survivor tee and marched with all the other women who had survived, and we all cried when they talked about our sisters who did not.
I lost a body part...an amputation, people hate it when I say that, ugh please, they did a MASTECTOMY, that is not the same thing as losing an arm...I beg to differ, men leave their wives after mastectomies all the time, why, because they think they are disfigured. That amputation is so much more than losing a breast, you lose your identity as a woman, since you have had those breasts since you got nipple buds at age 8-9. By the time most of us are in high school, our breasts are simply part of what makes us young women.
They allow us to feel pleasure during sex, oh, I know, not the S word, but hey, they do.
Some of us use them to feed our babies, I did, I fed precious newborns 5 times. We had a nursing relationship for 2 years plus or minus a few months, that is 10+ years of breastfeeding. I was breastfeeding when I was diagnosed with cancer.
Somewhere around the time I lost a very dear friend to breast cancer that all those pink do-dads seemed insulting. She was an early stage gal, 90% plus survival rate, and then she found some swelling over her collarbone and BAM she is now stage 4. She did not live long after her secondary diagnosis, but she tried so hard, she researched and she changed her diet and she did everything humanly possible (which means lots of chemotherapy...) She died anyway, not because she was not positive, not because she did not try. Aggressive cancer is hard to stop, and it killed her.
Every single time I see Pinktober items my skin crawls, my Mother Laquita and my sisters in breast cancer; Sharon, Deanie, Jamie, Deb, Janice, Madeline, Perlie, Kim, Kathy L, Kathy S; these were all women I knew and loved, I shared a breast cancer journey with these women, and none of them are alive today. They were mothers, wives, single gals, animal lovers, professional writers, advocates, and all were amazingly strong women. Their lives mean so much more than a pink wash of products in October, so very much more.
Holiday gatherings are so difficult for a child with autism, add to that some lingering institutional issues and cognitive delay of Down syndrome and a mom and dad have to be on their toes, most of the time.
Yesterday our tiny Estonian had a no good very bad day...we had Thanksgiving dinner at our oldest sons house and to us his home was welcoming and inviting, to Amanda, it was a new place with smells she did not know, with rooms she had not seen in a year and she was quickly overwhelmed, though outwardly she just looked excited.
She has items she frequently throws on the floor here; the TV remote, the phone, cell phones, toys, etc. Actually anything sitting on a table. We watch for it, and we try to put breakable things out of her reach, she breaks things frequently, some impulse she has to break glass especially, and she will keep going back to it if is is not put away until she does knock it down or break it. Many favorite mugs have suffered at her hand... (attention seeking behaviors) Since she had a developmental leap this past year (think terrible two's), she has been so much worse about this.
Needless to say, we were very nervous about yesterday, we decided to take turns keeping Amanda with us to prevent hair pulling, scratching, breaking things, or any negative interaction with the rest of her family. It happens often, both the grandsons were going to be there, she targets those smaller than her, sometimes you just feel like crying...honestly.
We walked through the door unloading things, we do a pot-luck dinner, and Amanda immediately threw all our sons remotes on the floor, so daddy took her to sit on the floor with him. While he was speaking to me, his head turned away, she turned around, found a small table with a potted plant sitting on it, and she toppled it, the plant fell off and the ceramic pot shattered.
We were there less than 10 minutes.
Daddy pulled her into his lap, she was pretty agitated, wiggling, pushing off with her feet, trying to scratch his hands, she wanted down, but she also wanted to make things go crash, bang, boom, her eyes were rapidly taking in all of the objects she could throw off of tables and shelves. She was scheming, and it was obvious.
I took Amanda in my lap so her dad could carve the turkey, and then he took her so I could eat, he gave her the iPad so she could calm down with her favorite app, um, that did not work. iPad on the floor. She was just beside herself.I believe that she hones in on the nervousness of others, and since she often hurts the grandsons by scratching them, their moms do not trust her, she feels it, and I do not blame them for wanting to protect their sons, I love those little boys too, and I do not want them hurt by their aunt. (If you are a special needs parent, you probably know what I am talking about, it is the reason many of you stopped attending family functions.)
Daddy went to eat, and I took Amanda to sit with me while I tried to visit with her brothers and sisters and play with my grandsons. She undid one side of her diaper diaper with me sitting beside her, and urinated on her brothers couch. Bless our son for not getting upset, he got some pet stain remover spray and vinegar and I sprayed down his couch.
After I put a towel down on the sprayed and cleaned wet spot, Amanda climbed onto my lap and hugged my neck. She backed away and her pretty blue eyes looked so sad as she made direct eye contact with me, she gently reached out and touched my face. She hugged me again, then looked into my eyes again, she was so sad, and her non-verbal language said "Mommy, I am so sorry". Those times when she lets you see HER and you see the confusion in her eyes and feel the sorrow, and you know she just needs you to hold her and show her you love her, that you understand her, they can break your heart because you know she does not want to destroy things, she doesn't, she wants to be loved and protected and she wants to be happy, like all of us do.
When she gets sensory overload, there seems there is little to do to calm her down, she needs time alone to calm herself, but in a familiar place, and sometimes that does not help either.. Sometimes a foot rub will, or brushing, sometimes a light massage.
Now when your little girl, who you love beyond measure, has just scratched and bloodied her sisters face, or smashed the mug with the sunflowers you got your husband after he said yes to adopting in Ukraine...lovingly massaging her little feet is HARD to do. You are human and you are angry and upset too.
Patience, patience, patience, patience, you need a lot of patience and lots of LOVE and many prayers, but you rarely reach out for support from other parents, even special needs parents, because sometimes they go to judging, and you are already feeling bad enough and you are already feeling inadequate, who wants to add shame to it? "If that were my child I would..." "Have you tired this?" Thanks, but that does not help, sometimes just hearing; "So sorry you had a day like that" is all you need, a little understanding and some compassion.
I have been a mother for over 35 years, but I have never mothered a child like Amanda, and I am learning as I go along, like any other parent. I do not have all the answers, she is a very complex child. I am constantly reading about post-institutional behaviors, and RAD and autism, some of the material helps, most does not. Likely those parents read the same books, some of the ideas work for their kids, and some don't, same thing here...
Much of the visit yesterday involved us redirecting Amanda away from various off-limits areas. (bathrooms, bedrooms) and preventing her from hair pulling and scratching.
We got home and put the girls to bed, and both my husband and I were completely and utterly exhausted. For once I actually fell right to sleep when I went to bed.
Today is a new day, it has to be better than yesterday, which all in all and (despite Amanda's incidents) was a good day, we loved seeing our older kids and their wives and our precious grandsons.
The best part about today? The girls can stay home and can decompress today, though Kara and Meghan do better visiting family, neither is 100% comfortable; the worst thing Kara did yesterday was to take some food off of other peoples plates, that girl LOVES her food...Meghan, who is almost a teenager, stayed in a room and watched her favorite movies.
I am taking our oldest son to Lowe's to buy him a new pot for the plant...a plant that was actually an Easter gift from us many years ago, and this mommy gets to go and to a fabulous place here in town and paint a painting with our oldest, my birthday gift from him. I truly need that time away, I am really looking forward to it!
Kara is a clever little girl, she has amazing problem solving skills and sometimes they get her into trouble. She has such a tender heart and is very sensitive to emotions. She is also very rough and tumble when playing with her sisters.
She has an amazing giggle and her smile makes everyone around her happy! She is not one to smile for pictures though. It is very hard to get a picture of her smiling, it makes me sad that more people cannot see her smiling face!
She loves playing on the iPad and has figured out how to
use Netflix like a pro. She prefers watching Barney to
any other video. We tried to find her a Barney plush
for her birthday; but they no longer make the big fluffy
ones. I am watching a few used ones on eBay, I know
it would make her happy to have one of her own!
Kara does not speak; she has apraxia and we are working hard on teaching her to duplicate sound. She uses sign to indicate her wants and needs, but gets frustrated when we cannot understand her. I know she has a lot to say! She fully understands everything said to her and follows directions well (when she wants to...)
We are so grateful that she has been very healthy,
We have 8 children and have been married 37 years.
Five of our children; Fred, Terry (Anna), Eric (Melissa), Brian, and Julia are on their own.
Meghan 14, Kara 10, Amanda 10, still live at home.
Meghan, Kara, and Amanda have the diagnosis of Down syndrome.
We have three wonderful grandchildren; Mathias and Madeline (Terry and Anna) and Desmond (Eric and Melissa)
We feel blessed to have a large family.