Our Daughter

Taizsia

Her name is said Taizsia (like "Fantasia" from Dismay) or Taz for short. Like her name she is very unique and keeps us constantly amused, awed and very busy. She was our miracle baby as after we had the boys and all the complications with the pregnancy and birth, the doctors said there would be no more children.

I had a very difficult pregnancy with her and almost lost her at 21 weeks, when again my membranes ruptured with a lot of amniotic fluid leak. But she was a fighter and I was hospitalized from that day on, given strict bed rest to prevent infections and labour and injections to help her lungs develop until she was born only a week shy of her original due date. I went into labour 16 times, over the course of the next 3 months, they stopped it every time. Finally they decided to induce me after a weekend of false labour in July.

You can imagine our delight when she was born a healthy, baby with all her fingers and toes, slightly over 6lbs, even born with a full head of hair and a tooth! She continued to grow, she was a small baby, staying at the 10%, but hitting all the milestones in her growth, crawling, eating, sitting, she even walked on her own at 10 months! She was talking up a storm at 1 year old and continued to do so, saying her first words at 14 months, and parroting everything we said by 2.

She was an extremely busy baby, she was always into things and for the first time found ourselves baby proofing the house, which we didn't have to do for the boys. She began to concern us, with her restlessness, never sleeping, she could survive on 3 hours a night, and was happy to get up and let the whole house know she was ready to go! She didn't really nap during the day, only in short spurts, and she cried a lot! She was not an affectionate child and we felt we weren't bonding as emotionally as we had with the boys as she really resisted cuddling, hugging, kisses. This would upset her most when she was upset. Her eating habits were terrible and still are, preferring to stay away from meat and only eat fruit and vegetables, in very small amounts at a time.

At this point, 2-3 years old, she started to what we thought was mirror the boys self abusive behavior, and do it very frequently. She also became aggressive with adults and still not affectionate at all. Just before her third birthday, the boys were diagnosed with a full mutation of Fragile X, so the doctor decided to do her as well. We were dealt a triple whammy as all tested positive for Fragile X Syndrome. It was very bizarre because at this time she was really out of control and when we got the diagnosis she seemed to settle down, it was almost like she was telling us something was wrong. Needless to say, we were crushed. Our Perfect little girl who had developed so well, showed so much potential, didn't have the same concerns as the boys did, was afflicted too. We had hoped she wouldn't suffer the same fate as the boys and were angry at life for hitting us three times! Her count was almost as high as the boys, reaching almost 400, Connor and Zach were at 600.

We were very bitter at this point and grieving for our three children, angry with ourselves for ever deciding to get the testing done, disappointed that our daughter, who fought so hard for life, would continue doing so. At this point we still had little to no knowledge of Fragile X and what it was or it's affect on the brain, behaviors, etc. It definitely took a lot of time and searching to come up with the knowledge we have now, the experiences we had with the boys, helped us prepare to deal with what we may have to with her as well.

She is mostly affected in the behavior area; it comes out very strong in her. ADHD (attention deficit hyperactivity disorder) and ODD (oppositional defiance disorder), are her main things. She is very verbal, swears, yells and screams, throws tantrums, is very bossy and really lacks social skills. She can become violent with her brothers as well as adults. She can be smiling one minute and screaming the next for no apparent reason. She is our biggest behavior challenge yet! She spends a lot of time in time out. She is having trouble accepting that she can not always have her way, but that really goes back to her age that she is functioning at which is about 5, in that particular area.

She is so smart, too smart; she was tested this year and came out bang on in her age group on most accounts, some over her age and some under. Her language skills are amazing; she uses words that most kids don't use until age 10 or 11. She communicates her needs and wants very well and is extremely independent. She begain to read books or make up stories based on the pictures she sees at age 4. She could spell her first name and was drawing people in great detail at age 5, unfortunately her canvas are our walls! She was in a specialized pre-school program that our sons attended that I really believe these programs had a very positive and profound affect on our sons, as well as Taz and they helped her with her behavior problems and concentration immensely! The staff there are angels I'm sure!

Taizsia has always been higher functioning and is pretty much at her grade level in school for now. As school is getting harder, it is becoming increasingly more difficult for her. She can read, print, she absorbs things like a sponge but really struggles with math and any logical thinking tasks. She is in a behavioral modification class, kind of like boot camp and has to earn all her privileges, which works incredibly well for her! She loves school and has the occasional outburst of behavior, but for the most part is really good. She really had a good teacher and a very patient understanding assistant to transition her into grade 2, after a wasted year in grade 1, at a school that couldn't handle her and didn't want to make the effort, she found a kindred spirits in her grade 2 teacher and assistant and had an amazing year. She is in a new room now for the next 2 years and seems to really like her new teacher.

She too is on medication. She use to take meds to help control her impulsivity, as she had no fears and would climb anything and jump off, no matter how high or run across the road without looking! That has calmed down with age, though she is an incredible klutz and falls and bruises herself at least once a day or walks into stuff, she seems to trip over air!! She is currently on Medication for her behaviors, depression and Anxiety and Epilepsy. She still takes Neuleptil at night to help her stay asleep, as she would not sleep much without it. We still struggle to get her to sleep but she will sleep in now!!! We do still battle with her behaviors on a regular basis, but they are more manageable now. Another benefit to the meds are the hugs and kisses we were all deprived of for the first 3 years, she does it on a whim now and I wouldn't trade it for the world! Though you do have to ask her to hug or kiss her, as she goes into sensory overload if she is not ready for this or doesn't want to be touched. We found out this was a serious issue with her when we had our assessments done at the M.I.N.D. Institute in California. Her body and her brain are not equipped to deal with these things without working out first, so asking her gives her the choice to decide if she wants it and readies herself for the sensation. More often than not, she chooses to hug and kiss you.

She is a girly girl now and loves shoes, dressing up, putting on make-up and playing with dolls. She loves her baby dolls and her cat Bandit and often holds and snuggles the cat like a baby. She is still a tomboy too and can get dirty with her brothers and have a messy face all dolled up with lipstick from her lips all the way up to her nose! She loves to have tea parties and get her nails painted and go shopping for new outfits and of course the matching shoes!!!

You can't help but love her as my husband says her snuggles are better than a warm towel straight from the dryer, her kisses are sweeter than honey from a honeysuckle flower and her smiles are brighter than the sun on a warm summer day. She lights up our days and is a treasure I would never part with in a million years!

We still struggle with our grief and in writing these personal stories, I do it with lots of tears at the struggle we have all had, with guilt, if I had only known, and anger at why them? And questions of what will happen in the future, what if something happens to us, who will take care of them, will they be OK. I think Taz will be alright, she has so many things going for her that she will make it, she says she wants to be a mom and a baby Dr. and I believe she will fight for all her dreams and we will be standing behind her supporting and loving her all the way, also thinking back and reflecting on all of this and being so thankful she is in our lives.

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