My First

I look at Livi these days and see less and less of the little baby I love to cradle in my arms and more and more of the independent little lady she is becoming. Livi amazes me on a daily basis. I can’t believe how grown up she is these days.

She is so goofy and funny! Always making me laugh with her funny faces, jokes, and quirky sense of humor. Are other kids this funny? I haven no idea but I love it… except when she uses it to put off doing something she doesn’t want to do.

Livi has a wild and vivid imagination. I love it. She tells us stories about monsters and tulips and flying and sinking and babies and ladybugs and running and toes and mountains and numbers and anything else a three year old could possibly think up. She goes in to choruses of elaborate tales and reasons for the way things are. She is so rad.

Along with her creative reality that she sometimes lives in she has some incredible mood swings to go with it. I think she has calmed down a little… or we have learned to deal with it and help her through it better. She is still VERY good at telling us exactly how she feels and what she wants from us when she is upset. She is a passionate child in everything that she does. I think her passion will take her far in life and I’m so excited to see where it takes her.

Livi is so helpful to me. I’m starting to realize how it is so easy for parents to rely on their oldest child for help with younger siblings and around the household. I know it is inevitable to a point and the natural way, but with Jon and I both being oldest children who where relied on heavily and had very different expectations put on us from our siblings, we are trying to be very conscientious about not putting that extra pressure on Livi. Livi takes a lot of pride in helping us out, but we don’t want her to think she has different rule from her sister or that we expect more from her. She is loving being able to do things on her own though. She can get her own snacks out from the snack cupboard, washes her own apples, sets the table, puts on her socks, shoes and pants all by herself! She smiles and tells us how proud she is of herself. I love watching her confidence grow!

Livi still has naps in the afternoon but is diaper-less for them! Yay! She has only had one accident during a nap since trying to night train a few weeks ago. We do still have her sleep on a soaker pad just in case. We gave up on the night training after about 5 days of fighting her to go pee in the middle of the night. She refused to sit on the toilet after being woken up to pee. It turned in to a battle with lots of tears. We were worried she was going to be traumatized or something and thought the middle of the night fighting was interrupting her sleep way too much… our sleep was suffering too. So, we will wait a few more months until we give it a shot again. Any suggestions?

Livi adores her sister, most of the time. She is so good at including her in play and telling me when she needs me to keep her sister away from her. Frequently, I hear eruptions of giggles from the two of them. I’m not sure they always know what they are laughing about. It is one of the most beautiful sounds in the world. These two were born to be sisters.

I’ll end with a few quotes that I can remember from the past little while. She is quite observant with an imaginative innocence that only an articulate child can have!

While drying off at the pool, after showers in the change room, Livi looks at and grabs my boobs and says “They’re not supposed to be down here. They are supposed to be up here!” Yes dear. I know. Thank you for pointing that out. 

She had an astute realization about my parenting style the other day. “You are a good mommy and a different kind of mommy and a silly mommy.” Yup, she is already realizing that I’m a “different kind of mommy”. She doesn’t stand a chance at being normal!

After helping Daddy find some stuff under the stairs with out any pants or panties on, she comes back to tell me “Look what I found in my butt! A tinsel! And look what else I found in my butt! My finger!” She’s gross. Go wash your hands Livi.

I love her. 

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World Down Syndrome Day 2012

Down Syndrome is not a disease. People with DS do not suffer from it.
It is genetic, just as brown hair and blue eyes. It is there at conception. 
People with DS are someones child, grand-child, sibling, co-worker, friend, lover, even parent.
People with DS can contribute to society just like any other person can.
Please do not think of people with Down Syndrome in terms of what they can’t do…
Look at them in terms of what they CAN do. 
They should not be underestimated or under valued.
They are human, just like you.

Last March 21 I was eagerly praying for court to happen in Bulgaria. Although that took three more months, we did get to confirm Sofie’s new Canadian name a year ago today! I reread last years post and noticed that I had thought this year would have a lot more of a personal meaning to me. This is true. I thought I was an advocate for people with Down Syndrome last year. This year, being an advocate has taken on a whole new meaning.

Livi took this picture 🙂
 

I have had to take a different approach to raising awareness for DS as a parent. I can’t distance myself like I could before. I can’t let ignorance or malice go but I need to figure out how to softly address the issues with others to enlighten them with out being defensive. It is always personal for me now. More than before. This is my daughter’s future I’m fighting for.

Since my life and family celebrates and raises awareness for Down Syndrome daily, today I’m just going to squish my chromosomally enhanced blessing a little more often. I’m also going to think of all the advocates who opened my eyes and lead me to this amazing honor of being a mom to my chromosomally deprived and enhanced children! 

Paperwork

Have you ever wondered what all the paperwork is that I complain about? Now that all most of the initial and major paperwork is done it doesn’t seem like that much to me. It is all important and benefits us so it was well worth jumping through the hoops. It is just a lot to think about and consider.

Aside from all the adoption paperwork, which is a separate entity in itself, we had a lot to fill out for Canadian taxes and various benefits. After Sofie was legally ours and a Canadian Citizen, the real work began! In order of priority for us…

  1. We applied for her Care Card – This was very important in order to not have to pay for all her doctor appointments out of pocket! 
  2. We applied for her SIN card, Passport, and Child Tax Benefit –  The CTB is through CRA which automatically enrolled us in the Universal Child Benefit since Sofie is still under 6 years old. All parents do this with a new child. We needed the Passport quickly because of a trip to Mexico Jon’s family was taking us on. The SIN card was easy to apply for with the Passport and it is needed for some of the future paperwork.
  3. We contacted and registered with the Child Development CenterUp until age five, special needs kids will get their physio, speech, occupational therapy, feeding therapies and most of the family support through the CDC… unless you get the therapy privately but that means paying for it yourself too
  4. Once her CareCard came we could register her under Jon’s Extended Medical through work.
  5. We applied for the At Home Program –  If you are accepted and given a choice between Medical benefits or Respite benefits ALWAYS choose the Medical benefits. Respite funds are still available through MCFD and other resources, but no other programs cover Medical benefits like the At Home Program does. In order to be accepted in this program the child needs to be dependent in 3 out of the 4 categories. It is easier to be accepted in the program after your child is 3 years old because then it is easier to show delay and dependence and not just typical baby dependence. 
  6. We applied for the Child with Disabilities Tax Benefit –  This is important to have in order to be able to get the credits on our taxes. It also automatically looks at whether you are eligible for a monthly disabilities supplement, just like the Child Tax supplement and Universal Child Benefit.  
  7. We contacted our MCFD Social Worker A lot of parents don’t do this and honestly, I don’t understand why. Once they have applied to the At Home Program (whether you are accepted or not) you have a file and a Social Worker. Your social worker can help you to get other services, like Respite which you probably won’t have through any other programs, among other services. There are a few different types of respite and the best one, in my opinion, is Direct Funded Respite, to give the parents full control. I’m on the wait list for this one. Since I’m not ready for Sofie to go off for a weekend with out me, I can use this money to pay for anything that gives me a break. I could hire someone to take her swimming, do therapies with her or just to baby sit if Jon and I need to go out. 
  8. We are opening an RDSPThis doesn’t quite make sense to me yet but basically, I understand, this is a long term savings plan for Sofie that gets TONS of added grants from the government. It is sheltered from affecting her disability benefits in the future as long as it is spent within the rules. 
  9. We re-did our Wills to include a Discretionary Trust for Sofie –  This is SO important! Most of us have trusts set up in our wills for our children to get if both parents were to die before they were adults. For Sofie we need to structure it a little differently and keep it in our will for our entire lives. If we were to leave a regular trust for Sofie to get at 19, she would have to claim it as income and not be eligible for disability benefits for as long as she has assets that exceed a few thousand dollars. The discretionary trust hides the money from the government by putting it in some one else’s name (you MUST trust that person implicitly) to be used solely for Sofie. The other person doesn’t have to claim it because it is for use on Sofie and Sofie doesn’t have to claim it because technically she doesn’t have access to it. Spending the money is up to the full discretion of the other person, which it why you REALLY need to trust them. This is legal in BC! They can receive this trust at any time in their life so Sofie will get her inheritance from us if we die 5 years from now or 50 years from now. If she dies before the money is spent then her beneficiaries will get the rest, her potential children or her siblings. It is also probably a good idea not to have a beneficiary be a trustee. Since they are in charge of the money, they could decide not to spend it to ensure they get it in the future. 
  10. We also applied for some community programs such as the Access card, to get free movies and entrance in to some attractions, Child Care Supplement for preschool costs, LMDSS funding for her music class/therapy and swimming lessons. There are so many grants and programs out there! I have put together a binder of resources and granting charities if you need any info!

I’m sure there will be more paperwork and programs to apply to as Sofie grows and gets more involved in different things but these were the major ones for us and probably the most important for any new parent of a special needs child! I’m not going to lie. It is a lot of paperwork and keeping things straight. You may need some sort of system. Even within some of these programs there is a lot of paper work to continue filling out, particularly the At Home Program, but it is worth it! When they pay for and deliver Sofie’s diapers, wipes and very expensive Pediasures, I’ll do the paperwork any day!