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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Friday, November 29, 2013

Autism and holidays

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!

Tuesday, November 5, 2013

Kara's 9th birthday

I posted on Kara's blog on her birthday, 
she turned 9 on October 28.   

Kara in winter 2008, such a tiny little gal!

 Pictures of Kara on or around her birthday for 
every year she has been part of our family.

Kara  today.

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, 
she has had some minor colds here and there, but 
thankfully nothing more serious. 

We are so happy she is a part of our family. 

Beautiful artwork featuring children

Such a beautiful Video

I have a voice

Gifts video