31 for 21-Happy Birthday Kara

My sweet little girls is 5 today. Will write more and add pictures later, I am falling asleep

31 for 21-Day 27-Amanda and the cat

This is Fuzz, he was a stray who was wailing outside the house a year ago. Somewhat feral and very skittish then. He has really grown into a sweet cat, he does not like to be picked up, but he loves for people to pet him, and he adores Amanda.

I heard Amanda giggling in the back yard and looked out and found her and Fuzz playing, they stayed together for quite a long time before Fuzz came over to yell at me; he was hungry.

You can see how huge he is, he was such a tiny grey fuzzball when we found him.
Where he got his name.

Isn't is great when a child can love an animal so much, at first she was a little rough with the pets, but after being scratched and bitten, she has learned to be more gentle.

Both Amanda and Kara were tired after SIT today, she did a lot of swinging and bouncing with Kara, but more craniosacral and deep pressure work with Amanda, Amanda was not laughing like Kara was either. Despite them both having Down syndrome, they are polar opposites in temperament and their therapy goals. I will say it again, all kids with Down syndrome are not alike, despite what folks try to tell you. LOL

We ran into a snag with scheduling the appointments; we were supposed to share OT units between Amanda;s feeding therapy and Kara's OT, but no one told P this, she though the girls were coming weekly, she said she simply cannot make a two hour time slot in her schedule every other week, so she wants to see Kara one week and then Amanda the next, that will not work for our homeschooling schedule. So we are going to have to compromise somehow. I cannot have that much time out of our day away from home weekly, we were gone over 4 hours today, and Meghan missed some school lessons.

Oh Meghan, she did not want to wear the pants I got out for her, some pink stretch cords from last year, worn once. They fit perfectly, but she was throwing a huge fit about wearing them, she kept telling me no, no, no and I used a line from her favorite movie to make her laugh and she agreed to wear them, but oh boy, what a conniption fit she threw.

We were all stressed when we arrived at P's for OT. Funny, we went into her front porch and knocked, rang the bell, and no one was there, I left to get gas and returned and she said the therapy place was in the back of the house, in an old guest house. Ah well, now we know.

After therapy we went to Target to buy Kara some birthday presents. I really cannot go by myself, so she picked out what she wanted, A Groovy Girl and a Barbie. She will get a bigger present too, I just do not know what to get for her.

So tomorrow Kara turns 5! I will update her blog with pictures tomorrow.

31 for 21 Day 26 SIT

Tomorrow morning Kara and Amanda will have their first sensory integration session with P, an OT specializing in this type of therapy.

From this website: http://autism.healingthresholds.com/therapy/sensory-integration
Sensory integration therapy is based on the assumption that the child is either overstimulated or under stimulated by the environment. Therefore, the aim of sensory integration therapy is to improve the ability of the brain to process sensory information so that the child will function better in his daily activities.

To be honest, I witness the girls seeking sensory experiences on their own, they certainly do not avoid certain situations because it is sensory overload. Amanda is overwhelmed by new people; but a few hugs and kisses and she adjusts, so we will see. I think there will come a time when I stop listening to people who see my girls once a week and trust myself more. Because they were not born to me, I felt less sure of how to approach their special needs, but we, Kara and Amanda and I, are learning more about one another every single second of the day. I feel more secure in my own decisions and judgements and feel less inclined to listen to others, I know my children better than them, maybe I did not when they first arrived here, but that is not longer the case.

I hope this makes sense to other moms and they can understand what I am trying to say. When you first adopt a child, they are a mystery to you and since you know so little about their personality and their past experiences, you welcome input from others, you need the support, but after a time the support feels more like interference, and it does complicate the bonding process because these strangers are in your home and the children are not certain who these people are, they keep leaving the strangers and sitting with you because they now feel safer with you, and this makes the strangers (therapists) impatient. I do not think any of our therapists have worked with internationally adopted children and they are not at all familiar with post adoption issues and institutional behaviors. These are not children who have lived with a family all their lives, they have attachment issues, they have trust issues, and they need a very patient, loving, and understanding person to help them.

The SIT we see tomorrow is rumored to be all of these things, except I hear she is also very stern, so fingers crossed this will be a positive and helpful experience for my girls, sometimes I feel like we are pushed into too many therapies and at times I feel like it is a negative judgement of my parenting abilities, as if they are saying I am not enough to help my children. And perhaps they do think this, after all, what do they know about me or my family except that one hour they spend with us. My girls are more important than my bruised ego though and I (we) will do what we need to to make up for all they lost their first 3 years.

However I am glad we sought therapy for the girls, they needed the extra help, and for the most part it has been a positive experience with some exceptions. I am a demanding person, I admit it, headstrong, opinionated, I want what is best for my girls and I am getting too old to care if I am not being nice all the time. People do not have to like me as long as they do their best for my children.

I am hoping that P will be as wonderful as A, our ST, has been for our family.

31 for 21 Day 25-Buddy Walk

Kara having a good time.

Three of the 4 children with Down syndrome enjoying the bouncy obstacle course. They could not do what typical kids could and wanted to play in the middle. That was not to be tolerated, they kicked us off.

Oh goodness, missed another day in the 31 day promise.

Our Buddy Walk was today, I look forward to it every year, always hoping the girls will have a marvelous time, this year it just did not meet our expectations.

I wrote more, but I think I will keep my mouth shut, we left early with 2 disappointed and crying girls, so much for a fun family day.

31 for 21 Day 23-

I missed a day, I could have sworn I wrote a post for our blog yesterday, but I certainly was wrong; there is nothing here for the 22nd.

I am warning you, I am in a melancholy mood, I read a blog that brought me to tears and my heart is breaking for this family. In addition to this, I spent 20 minutes going through pictures of children on the Reece’s Rainbow website with A, the girl’s speech therapist. She had never seen it and as she read through some of the children’s stories, I saw on her face the same sorrow and shock I felt the first time I saw RR, (I see more hope now than I did then, after so many of these children now have forever families) how I sat and cried in the wee hours of the morning, everyone asleep but me. I was exhausted when I woke the next day, but the first thing I did was go right back and visit RR again. I went back day after day, sometimes several times a day, and the tears came every time. Hundreds of unwanted children, abandoned because they were born a little different. I visited for weeks and the weeks became months and then I finally realized that crying would not help them, praying yes, but what they needed was a mommy and daddy.

It took me a long time to come to terms with what my heart was telling me; that we should adopt one of these precious children, and after going through the requirements of each country and crossing them off because we were too old or had too many children, I settled in on Ukraine. To be honest, it was also because it had the least expensive adoption program. Mind you, I never mentioned adoption to Tom, he had no idea what I was thinking, I was afraid to say anything out loud for fear someone would shoot down the dream. And then I emailed Andrea, and one of the first things I told her was that I was a cancer survivor, and would someone let me adopt.

Before we could even consider adoption, I had to talk to my oncologist, I never asked about my survival chances, I never wanted to know from them, because I watched my mother die exactly when the doctors said she would, and I did not want a self-fulfilling prophecy handed down on me. ( oncologists rarely share this with aptients any longer, that was 33 years ago) So I got up the courage to ask him if he thought I had a long life ahead of me. He said “You are in complete remission”. Now if you have ever had cancer or had a loved one who has, you know those are the 5 words you hope and dream for. With his blessing, we went ahead and committed to a girl with sparkling blue eyes and an impish grin.

I was scared though, I had this very private fear that adopting another little girl with Down syndrome may put Meghan in danger, that in essence it was telling God that his tremendous gift to us, our Meghan, was not enough and we needed MORE children like her, I actually felt like I was being greedy. I was very scared that we would bring home Sanna (our first commitment) and Meghan would fall ill. So I prayed a lot, HF and I had many conversations about how much we cherished Meghan, but we wanted another child to have a chance to live in a family and know what it was to have the love of parents. My fear of losing Meghan was one reason she came to Ukraine with us, I wanted her with me constantly, thinking if she were within my sight and no harm could come to her. Irrational, yes, but I suffered enough loss in my life to know that terrible things can and do happen to ordinary people, that life can be ironic, and that the universe is sometimes very cruel.

It wasn’t just our adoption, I always felt like looking over my shoulder, not certain the threat of cancer was gone in my life, we call it; “Waiting for the other shoe to drop”…I spent 3 years post cancer waiting for more bad news, I had lost three dear friends diagnosed the same time I was during those 3 years, their loss was devastating for me and for many in the on-line breast cancer support group I moderate. All three women had minor children, one had very young children, she was a young mom. They were gone so fast and it scared the rest of us, because you know, “There but for the grace of God go I”. I can almost feel a synergy with battle veterans, all those soldiers who fell while you lived, and the guilt is tremendous, why did you live when these very special people did not? This is why people who live after cancer are called survivors; because we lived through the ultimate battle, one for their very lives. It also gives us a sense of just how short life is and what a tremendous gift each second we live is. I live in gratitude for every day I am living and breathing, so thankful that I did not fall and that I was allowed the gift of adopting two very special children, two little girls who just had teeth brushed and are getting ready for bed, here in my home. I have not lost the wonder of it, of our adopting them, it seems unbelievable and yet here they are. I feel so wonderfully lucky, and honored that we can parent both of them.

So yesterday was difficult, not because of what we heard, the neurologist was very positive, but because of what I imagined, those terrible mommy moments where your mind goes to the dark places, the “what if’s’ where your children are concerned. What if Amanda has epilepsy? Well certainly it won’t change who she is now, because she would have had it already, but maybe she has a brain tumor, too many women I loved have suffered through brain tumors from breast cancer mets, my mother was one of them, how did they find out? They had a seizure that told them cancer had spread to their brains; and children get cancer all the time. After I while I told my mind to stop, quit thinking the worse, surely nothing like that can happen to one of my children, but yes, bad things do happen to children all the time. We will have to wait to know about Amanda’s epilepsy or lack of, I honestly feel like she is fine, it was just that morbid mind going crazy.

I am going to ask again for prayers, first for a sweet little girl who is in Eastern Europe and desperately needs a family, her name is Paula, and we are her Christmas Warriors, and we are asking you to send a donation for her grant fund, maybe having money to help them will enable a family to commit to her? Click on her picture to donate.


I added a button to our blog for Polly too, her parents learned she has a rare condition called Moyamoya, it came on suddenly and I know that your prayers will comfort Polly and her family. Yes, Polly also has Down syndrome and she also has a new sister with Down syndrome adopted from Ukraine. They are an inspirational family with strong faith. They need love and support right now.

Grab This Button

31 for 21- Day 21-prayer request

OT today was productive for Amanda, but not so much for Kara or Meghan, who were not being cooperative at all. I scolded Meghan after M left and she kept coming to me, hugging me and saying she was sorry. That is a first, she will say she is sorry, but in a sarcastic tone, she seemed genuinely sorry today. Maybe she will try harder next time? M kept calling the girls by the wrong names, so many people do that when they visit, they cannot remember who is who. One thought Meghan was adopted and Amanda was our homegrown daughter, guess it is the blond hair LOL.

Amanda will be getting an EEG tomorrow, some of her therapists were concerned because she seems to stare off into space a lot, not certain whether it is behavioral or if she is having petit mal seizures. Since Amanda does have plagiocephaly, a seizure is a possibility, I am hoping and praying she will not have a seizure disorder, poor little girl, she has enough to deal with already. Will you pray with us that she will be OK?

31 for 21- Day 20

Since Meghan was born I have been collecting articles about people with Down syndrome, happy stories, inspiring stories, I needed the assurance that my daughter could have goals for her future, that she would not stop learning after high school, and indeed the many young adults I read about show exactly that. Now we have three little girls who have a future we look forward too. Certainly not the gloom and doom picture painted by that first pediatrician, almost 9 years ago.

I wanted to share a video, I am a little upset that so many great youTube videos about Down syndrome have disabled embedding, I suppose those of us with blogs put too many you Tube videos on them, who knows, but here is the URL:http://www.youtube.com/watch?v=mk5Wma45ZMw