Who am I?
- I am Amanda, a stay at home mother to two wonderful children, Fiona & Ferris. Fiona has Autism, possibly caused by a small genetic deletion at 22q13.1 (but not the region attributed to Phelan-McDermid Syndrome - although she presents similarly), but we cannot say for certain, as her particular deletion is undocumented. In other words, according to medical literature currently available, she is the only known person with a deletion in this exact region, and so it is of "unknown clinical significance" and we have no idea what her future holds. Currently she is almost completely non-verbal, her only real word with any real meaning being "boob" as she is breastfed. *gasp* Yes, you read correctly, my almost 3 year old daughter still nurses, and I'm proud of that fact. Ferris is a neurotypical little chubba bubba baby man. He gives me sanity, and hope, and comfort for the future. He is nearly 8 months old at the time of this writing, and he is my charming, adorable, little-big guy. He is also breastfed, and doesn't seem to mind sharing with Sissy, who is the neatest thing since pureed peaches in his eyes. Want to know more? Just ask!
Wednesday, March 30, 2011
I need a new phone. I'm on Sprint, and under contract, but have no desire to switch carriers - I'm very satisfied with Sprint. I'm currently using an HTC Hero with Google, and it's about a year old, and giving me trouble lately. Seems pretty much par for the course for me. One year in, phone needs replaced.
So anyway, I'm wanting something different and fancier. Nathan got a new phone recently too, and I really like it. It's a HTC EVO Shift. It's pretty sweet. He wanted it because it has the slideout keyboard, but I could go either way on that feature. I'm used to my touchscreen keyboard so it's a nonissue for me. I've played around with his phone, and it's very snappy and it has a lighted camera too, which is awesome.
As much as I like his phone though, I think I might enjoy the HTC EVO 4G better (both are 4g just to clarify, but I'm not in a 4g city so moot point). I like that it has a bigger screen, and front facing camera. I've not actually played with one though so I don't know how great it actually is. I've read some reviews, and most people seem to love it, with the main complaint being that it is TOO big, but I think the size is nice. I did see one on display at a store, but it was a dummy model so I couldn't actually play with it, but the size felt great.
So I'm torn. I can't decide which phone I want. So I'm asking here if anyone has either of these, could you write me a comment with pros & cons and help me make a decision? I'm planning on buying 4-1 or 4-2.
- Posted from iPad so forgive any auto-incorrects.
Tuesday, March 29, 2011
They let her color a picture with a marker, a picture of a little duck, and she did really well with it. They helped her at first, guided her hand to show her how to fill in the picture, and then she finished it on her own. She did pretty well staying in the lines, though she escaped them in a few places, but for her first time actually coloring something in - she did REALLY good. I'm so proud of her.
Her speech therapist played tea party with her, and for the first time ever (and I've tried so many times) she actually mimicked the imaginative play of pouring the teapot into the teacup, and pretending to drink from one. She never does that. Never never ever. I was so happy to see this!
In PT, she did great too. She got to play in the ball pit again, and she also got to swing. She really loves the swing they have there. I need to see about getting her one like that for home. It really seems to calm her and help her focus. They worked with her on kicking a ball, which she is still not quite sure why she should when she can pick it up and throw it, but we're working on it.
Overall, she had a really good day. She threw a bit of a tantrum in OT, but when they got out the water art set she was happy happy. =) <3
Monday, March 28, 2011
From Walgreens, I bought the following:
3 boxes of peel and stick security envelopes, a zippered 3-ring binder (for my coupons), 2 cans of Edge brand shaving gel for Nathan, 2 deodorant sticks (ban & lady speed stick), 2 bottles of clean and clear body wash, 3 cans of tuna, and a pack of gum. I spent $6.68 out of pocket, and got $3 back in register rewards.
Next, I went to CVS, and bought these:
7 assorted boxes kraft Mac n cheese, a bowl noodles (yeah, not the healthiest, but it's a weakness of mine), 2 boxes nutter butters, 2 boxes oreos double stuffed, a box of assorted herbal teas, 10 cans tuna, and 3 cans campbells cream of soups. I spent $3.60 out of pocket.
So... That's 40 items for $7.28. Good, right?
- Posted from iPad so forgive any auto-incorrects.
Sunday, March 27, 2011
Target has Pedigree dog food on sale this week. 20 lb bag for $10.99. If you buy 2 bags, you get a $5 Target Gift Card. If you have the Red Plum coupon insert dated 3/6, and its the right one lol, there is a coupon in there for $3 off a bag of Pedigree dog food. So, if you have 1 coupon, your final cost for 40 lbs is 13.98 + tax (18.98 OOP with $5 back), and if you you're lucky and you have 2 coupons squirreled away, your final cost is 10.98 + tax (15.98 OOP with $5 back). Not bad for 40 lbs of pedigree!
So get clipping, and get to Target! <3
I might post some more deals later in the week. I'm still waiting on some coupon inserts to see what else is out there. Hopefully they arrive tomorrow. <3
Off to shop!
So, I got up way too early today after getting a late start to sleep, so I'm super tired, which usually means super cranky, but I'm not letting that ruin my Sunday. Sunday is new coupon day, new sales day, and that gets me excited. There are some really good deals this week, too! A lot of freebie offers, and a lot of ECBs and RRs out there to grab up. And a lot of great coupons to use up! Squee!
Icing on the cake? I have bout $25 in ECBs and $30 RRs already to start out with! I am going to come out like a bandit on this next run. And that is something to get excited about in our current economy.
I wish every day was new coupon day!
Okay... That's all for now. After I've gone through my fliers, I'll post a good deal for everyone. Maybe I'll do that weekly. Maybe make a separate blog for it if there is enough interest. Anyway, I'm going to try a nap. I need my energy for SHOPPING! LOL
- Posted from iPad so forgive any auto-incorrects.
Saturday, March 26, 2011
Blah, meh, and feck.
Maybe I'll get a nap in today. Ha. Yeah, right...
Friday, March 25, 2011
The other day I wrote about our bedtime routine. Well, we also have a morning routine. When Fiona wakes up, and I get her from her room, and get her diapered, I will extend my hand to her, and she will hold my hand. Then she will lead me into our living room, over to my computer desk, turn the chair around to face us, pat the chair, then pull me to it, and then push me until I sit down. Then she climbs in my lap to nurse. This is one of the ways that I said she can tell us what she wants without really speaking. It's actually quite funny.
Another thing she does sometimes, if I'm holding Ferris, she will pull Nathan over to us, and put his hand on Ferris until he picks him up so she can climb in my lap. She also directs our hands to open door locks, point to objects, and unlatch her high chair tray when she is ready to get up. Like, she seriously lines our hands up right on the latches. Hehe. Also, before she learned how to scale a baby gate, she would direct our hands to the latch on that as well when she wanted to go through one. Of course now we just scale over them like they were nothing, even the tall ones.
Oh, back to the mornings. There was a perfect example of my circle-speak. After nursing for a few minutes, we're ready to get in our high chair and have breakfast while we watch The Wiggles or Play With Me Sesame.
Love this girl.
I am seriously in love with couponing. I've been building up my coupon stash and week by week the deals are getting better and better. Thursday's shopping trip was quite a hit. I spent a grand total of $180 out of pocket at Walgreens and Target, and received $20 in Walgreens Register Rewards (credit for future store purchase good for 2 weeks), and a $5 gift card from Target. Should have been $10, but I wasn't paying attention and grabbed the wrong thing for one of them, but still got a great deal on what I got. So add in the rewards credit & gift card and I spent $155, which is about what I'd spend in one week on groceries before doing coupons so seriously, and this is on a budget bargain week of groceries. I have expensive tastes... If I wasn't watching the budget, a weekly expense of $200-$250 was completely normal for me. I seriously am shocked when people say they spend around the $50 mark in a week on food. My record low was still around $100 for the longest time. Again, this was before my life took the coupon detour. This week, I'm actually eating for free when you break it all down.
I bought with my $155... (full retail value or sale price in brackets)
A weeks worth of groceries. [$125]
3 Mens Gilette ProGlide razors [$10 ea sale price ($30)]
1 Gilette ProGlide razor cartridge refill 4 pk [$15 sale price]
1 mens Schick Quattro razor/trimmer [$6 sale price]
1 womens Venus Spa Breeze razor [$7.50 sale price]
1 Venus razor cartridge refill 4 pk [$15 sale price]
2 boxes L'Oreal Preference hair dye [$8 ea ($16)]
1 Method hand soap [$3]
1 Always pantyliner 40 count [$4]
2 Dove dark chocolate bars [$0.50 ea sale price ($1)]
1 Gilette fusion shave cream [$4]
1 John Frieda full restore shampoo [$6]
1 John frieda full restore conditioner [$6]
2 John Frieda full restore root lift foam [$7 ea ($14)]
2 Suave professionals dry shampoo spray [$4 ea ($8)]
2 Biore pore strips [$7 ea ($14)]
2 Biore moist facial cleansing cloths 60 ct refill packs [$8.50 ea ($17)]
Cat food [$13]
2 Crest ProHealth mouthwash [$3 ea ($6)]
3 Reach mint waxed floss [$1.75 ea ($3.50)]
1 Plackers floss picks [$2]
Okay so that's $191 of non-grocery items, $316 altogether, and $345 if you add tax. I'd say I did pretty good. I underestimated my values earlier when I just glanced at the pile of goods. Now that I actually look at the itemized list, I'm even prouder of myself.
Ahhhh... It feels so good to save money. And we are set on razors and hair products for a good long while. LOL
I'm still learning, but if you're interested in getting into hardcore couponing, I'd be glad to help you get started. It's a bit time consuming at first, but it is so worth it. And the longer you do it, and the more you learn the art, the less you actually spend at the checkout. Also be sure to tune in to TLC on April 6 for Extreme Couponing, maybe you will pick up some tips!
Thursday, March 24, 2011
Next, we play with a few toys, usually her magnetic art board thing. She loves that, and loves for me to draw on it with her. She will take my hand, and put it on the magnetic pen, and wrap her hand in mine, it is super cute. I let her direct the pen, my hand is just there as a comfort I think. She doesn't really draw anything specific yet. She is really into lines. I think she is trying to draw the letter A sometimes.
After toys, I tell her to get a book and I will read it. She gets a book, I read and she turns the pages for me. Next, she runs for her Big Book (it has letters, first words, colors, numbers, etc.) and climbs in my lap and opens it to the alphabet page and points to the letter A, and clearly says "A"followed by the same for the letter O. Then she grabs my hand and makes me point at all the letters and say them for her. Next I ask her where some of the letters are, and sh gets them right most of the time. We only do 4-5 at a time though, because she gets bored and wants to move on.
Next is numbers, and she will point at objects while I count them out loud for her. Then we do words, and I ask her where each thing is and she points to the picture, and is usually correct.
I know for some people this doesn't seem like much, but it really is, and I am so proud of her.
Lastly, she climbs into bed and I tuck her in, with her glow worm, named Glowy, and I tell her to push the button, which she does, and I ask for a kiss. She holds Glowy up for me to kiss. Then if she is feeling nice, she will pucker her lips and let me have a kiss, other times she covers her face. Then I tell her to give Glowy a kiss, and she does. Such a sweet girl I have... <3
I love her so, so much.
Tuesday, March 22, 2011
Franklin Effing Goose.
There is a lot of buzz going around the interwebs about this company and their shady dealings, lack of ethics, and outright abhorrent treatment of their customers. Well, I am one of those customers. As if I needed something else to go wrong right now. As if I am not already under enough stress. Let me tell you, when a mother is already at her wits end, it's generally a good idea NOT to piss in her Post Toasties. Well, I guess Franklin Goose was not aware of that little fact. It's actually not really a good idea to piss in ANY woman's Post Toasties, especially not a mother, and most of all, a SAHM with a lot of time to spend on bringing you down.
I'll give you the quick rundown, in case you aren't aware of the scam they were running.
- A company called JSA Technologies starts a natural & organic baby product internet based store, called "Franklin Goose".
- They put up an ad looking for someone to help them come up with a viral marketing strategy and offer to pay $25,000 for the winning idea.
- The strategy is decided on, and a promotion begins. Franklin Goose asks people to write reviews for products on their website in exchange for $5 store credit per review with no limits.
- Some people write crappy one liners for reviews, and Franklin Goose says they will have to manually approve all of the reviews, and it may take several days for credits to post. Around this time they also start asking for people to work for them, and thanking everyone for all of the good reviews, the ones that are approved and credited.
- Franklin Goose encourages everyone to keep up the good work and keep telling friends to come write reviews and check out their store.
- Credits start rolling into accounts.
- Some people begin placing orders with credit right away, and a few people actually get their orders, which makes the rest of us feel pretty good about trusting Franklin Goose to keep their end of the deal.
- As the orders start to come in full force, Franklin Goose offers the option to "bank" credits for 6 months - 1 year and gain interest on the credits at a rate of 10% on 6 months, and 20% on a year. We are also told credits will be good for 2 years.
- Other people place orders, only to be told that just about everything in the store is backordered. Some of us wait several months, and some of us cancel our orders, deciding to place them later when they are restocked. Some continue to wait, and wait, and wait some more, until they no longer need the item ordered.
- Franklin Goose assures everyone that their orders will eventually be fulfilled, but they are focusing on credit card orders first. Most of us understand, and are patient.
- A lot of us decide that we want to be nice and help this company, and cancel our orders, and bank our credits, on the promise that they will be better suited to fill our orders after they have established themselves better. We don't want to run them out of business, we respect them, and want to help them get going in this awful economy. So they ask us to bank, and we bank.
- Those who did not bank continue to wait on orders. Those who banked for 6 months are anxious to spend the credits on Christmas gifts with the upcoming Holiday shortly after the 6 month term matures.
- Just before this 6 month period, those people that banked 6 months, and those who did not bank, or had pending orders were told remaining credits would be frozen, and banked, with interest, because they were overwhelmed with orders. Some were upset, but most were understanding.
- Just before the one year mark rolled around, they emailed their "loyal customers" explaining that all credits were being taken away, reviews taken down, and the reason being that many of the paid reviews were not honest, even though at the time they said reviews were being approved. So we're called dishonest, and punished for trying to help this new company get off the ground. But they offered us a 40% off coupon to use on a single order that does not include any sale items, which is still lower than their markup for profit margin, and inflated pricing, so it's really not any kind of bargain, and is just adding insult to injury.
- We boycott Franklin Goose and demand they make this right.
- They release a letter stating there are only 40 of us, and we are all the ones who scammed them and abused the terms of their promotion. So many things wrong with that accusation, I'm not sure where to begin, but well, we didn't scam them because we were the ones being scammed. We got nothing, or very little if anything, for our time & efforts in writing reviews and driving traffic to their website, providing new content and higher google ratings, and essentially built their business for them, and we were not paid for our work. Sounds like they scammed us. And abusing the terms? What terms? There were NO LIMITS. NO TERMS. Oh, and there are more than 40 of us.
So please, do not ever give Franklin Goose your money. They are crooks. No better than common thieves. They stole from thousands of people. Hundreds of thousands of dollars worth of advertising, and written content. Countless hours of work, labor. And they think they can get away with this? They have another think coming! And I apologize if this post was disorganized, or I left something out. I am just highly angry over all of this. That's why I'm providing the link to a more thorough report of this scandal.
Franklin, your goose is getting cooked.
One such topic is my sanity. Allow me to explain.
I often say that Ferris, my son, is my sanity. He keeps me strong and hopeful. Not to mean that I'm playing favorites or anything, I love my children equally but differently - as in, they are different, with different personalities, and so I love different things about them, not that I love either more or less than the other. They are both my life, my everything, my reason for being. I love Fiona's brilliance, and persistence, and ability to overcome nearly any obstacle or hurdle, and I love the way Ferris is able to keep me sane (Ask me if I still feel that way come the teenage years, lol).
So, since were going back in time here, I figured I would share Ferris' birth story as well. Here goes. This is another that I am taking from an old facebook post, to keep the accuracy, as memories have a tendency to transform and reshape over time.
Ferris' Birth Story
Okay... Finally home for a few minutes so I guess it's time to try and write this up if I can get through it all again.
This was not at all the experience I had in mind.
We were going to try for a VBAC (and I still do not regret trying!) and were going to do an induction. We got all that started, and I spent 24 hours having still random contractions that hurt, but weren't really doing anything. They got close together, and I managed to dilate to a 3-4 depending on who was checking. I wasn't effacing any though, and he wasn't descending so wasn't engaging and it just wasn't going anywhere at all. My contractions were really odd, too. They were super strong and painful - but they didn't last very long. Most were like 15-20 seconds, a few went on a bit longer but that was the average right there. I thought they should be longer & stronger. They were coming at regular intervals but really not much was happening - even after breaking my water. After 24 hours of starting the induction, and 12 hours after breaking my water, we came to the sad conclusion that it just wasn't happening. My doctor said she had suspected for awhile that my pelvis was on the narrow side, but she was still willing to let me try and hoping it would open up more in the end. This would explain the pelvic pain I had been having (SPD) - it was trying to open up - trying REALLY hard! - but it didn't do much in the end. After a LOT of tears we decided to do a c-section. They left me to get the OR ready for me, and I had a few more tears out. Suddenly everyone ran into the room, put me on oxygen, and said baby's heartrate was not being detected anymore. They tried to move the monitor around and couldn't find anything. I honestly hadn't even noticed, I was so worked up in my own upset. It all happened pretty quickly. They said there wasn't time to waste at this point and I found myself flying into an OR and onto the table, still in tears, freaking out about what was going on.
I guess this is a good time to note, I had an epidural, but it wasn't working right. My right leg weighed a ton, was totally numb and barely movable. My left leg was fine, tingly, but I still had some feeling in it, and could move it around as well as ever. I was still feeling the pressure of my contractions, and a bit of pain on the left side of my abdomen. I had mentioned this to my doctor, that it wasn't working 100% and so the anesthesiologist said he could fix it. They messed with it a bit, not sure what they were doing but I never felt any changes. This was all being done while getting things ready, and next thing I know they are poking me asking if its sharp, and I felt them cutting my left hip. I said it hurt, and they stopped. They tried a local anesthetic over my suspected incision area (my doctor - who performed my 1st c-section - couldn't even find the previous scar!) and it wasn't working either. They made a small test cut and I flinched. Next thing I know I hear "We're gonna go general" and someone asking my permission to knock me out. I said "Just do it, get him here safely" and next thing I knew a nurse was smiling at me and telling me everything was okay and done.
Ferris was fine. 8 lbs, 2 oz, an 19.75 inches of perfection. I wasn't so good though. In fact, I was in pretty bad shape. I lost a lot of blood, they nearly lost me, and came very close to needing to do a hysterectomy to control the bleeding. Turns out, while I healed beautifully on the outside, I scarred horribly on the inside, and had major adhesions. My bladder was stuck to my uterus, and had to be cut through to get Ferris out safely. So my bladder is a mess and I'm stuck with this freaking catheter until Thursday. Yay. Probably going to have a lot of problems with it from here out, but shouldn't be too bad they say. I'm also terribly anemic right now from the blood loss and incredibly weak. It's possible for me to still have more children - but I would need a much higher incision, and honestly, I'm terrified to even think of doing this again at this point.
On Ferris' 2nd day out in the world, he started experiencing some breathing difficulties and was found to have fluid in his lungs from being born c-section and placed in nicu. We're hoping he can come home on Monday... he is doing really well.. but I was absolutely terrified when they put him in there.
Anyway, I'm out of time, gotta go feed the little dude.
And yes, he was worth every bit of the trauma.
Monday, March 21, 2011
She Can Talk in My Dreams
October 21, 2010 at 4:30pm
I'm usually a pretty private person when it comes to my innermost thoughts & feelings, but I'm trying to change that a bit, because if I keep it up I may very well lose my mind. I feel like I'm trying to be too strong, for everyone, all the time, and it's really getting to me. Sometimes, I need to just be vulnerable, be weak, and be human too. It's really tough for me, too, dealing with everything we are going through with Fiona. It's freaking hard.
We've been having her evaluated for Autism, and part of that process was genetic testing to rule out syndromes, and we expected a clear result, but instead we found out she is missing some information on a chromosome. We don't know if it's inherited, or spontaneous, or what it means for the future. It is an undocumented deletion.
I've been spending the last few days since finding this out researching deletions and what that means for these children with these problems, and a recurring theme I've seen is "non-verbal". A rare few are able to talk, but for the most part they just don't. I'm saddened that I may never hear my sweet precious girl really 'talk' other than a select few words. I may not be able to have a conversation with her. I may not hear her voice, her thoughts... It's like she is trapped in her own mind somehow. We know she's smart. We know she has a completely normal brain via an MRI. We know she thinks and feels and behaves for the most part normally, except for her stimming behaviors of course. She loves big. She figures things out. You can see the wheels turning in her head. She just can't express those thoughts and feelings and wants clearly. I don't know if she ever will. I just don't know anything, and that is so scary.
I guess I should be happy, and grateful, that she has her health. Most kids with chromosome issues have so many disabilities and birth defects, heart defects, dysmorphic features, shortened lifespans... and she as far as we know has none of that. She is in great health, with normal organs, a normal brain, normal features, and hopefully will live a long full life. Her only outward manifestation of this (which I didn't realize was even connected until reading stories of other children with similar issues) is that her legs turn slightly inward (pigeon-toed) and she walks with an odd gait because of it, but she gets around very well, albeit a bit clumsy. I should be happy that she only has this and the autistic-like traits. But still, I am sad for the things she may not do. I hope she does them anyway, and I will do everything to help her get there, but I'm just so scared that she won't and this crushes me. I can't help it. It really hurts.
But then, she always talks in my dreams, and has such beautiful things to say.
Sorry for all the rambling thought here, I'm just in a weird place right now, coming out of the shock and into the reality and its hitting me a bit hard. I know in time, it will get better, and instead of focusing on the cannot and will not, I will focus on what she can do and does accomplish. I know it will get easier. I know I will always love her and accept her. I know she will always be my perfect special little princess. She will always be beautiful, smart, loving, and perfect in absolutely every way. That will never change. Who she is, will not change. But right now, I find myself grieving for the little girl in my dreams, the little girl that may never be. It's hard. I feel guilty in a way for even feeling sad. But again, I am only human, and that's okay.
She will always talk in my dreams.
I think we were at 2 years old, with a referral to see a specialist. That sound right? Okay, carrying on...
It took about 3 months to get the appointment for the specialist. Everything had changed at this time. I had a new baby, Ferris, and I was struggling with PPD, and PTSD from a traumatic delivery. I had also recently lost my father a week before my son was born, and now I was having to come to terms with potentially having a child with Autism. To say I was a mess would be a major understatement. Thank goodness for my friends and family supporting me and lifting my spirits during this time. I was completely lost.
After the initial evaluation appointment with the specialist, she told us she was pretty sure Autism would be an appropriate diagnosis, even though she is an atypical case, she meets enough criteria for it, but she wanted to check a few other things before giving her the official label. She wanted us to speak with a geneticist to rule out certain conditions, particularly Rett Syndrome. She said that it is uncommon for girls to have true Autism, and we needed to rule out other things first.
So off we went to see a geneticist, and had Fiona give a blood sample (that was fun O.O), and wait another 5 weeks for results. We honestly didn't expect anything to turn up on the test, it was just a process of elimination, and this was one more step we had to go through. Finally, we got the phone call with the results.
"First of all, one of the things we tested for was Rett Syndrome, and she does NOT have that, so that's good. Unfortunately we did find that there is some missing information on one of her chromosomes. This particular deletion is undocumented, and I need to research it further, but I'll see what I can find out on it, and then you can come in and we'll discuss what this all means. The good news is, this is a diagnosis, and you can use that to get her all the help she needs. Let me put you through to my receptionist, and we'll get you in sometime in a few weeks to go over this."
Holding back tears, and feeling a lump forming in my throat, I waited for the doctor to transfer me to his receptionist, and schedule another visit to go over the results, hung up the phone, then tried to calmly explain to my husband and mother what I was just told. We were out and about that day, in Mom's mini-van, and I was sitting in the back with the kids, and trying to keep myself composed and not break down in front of everyone. I tried to tell myself that this didn't change anything. Fiona was still my perfect little girl, she was still so smart, so perfect, so beautiful, happy, and healthy. And really, who could ask for a sweeter little girl? But now she had a label, a stigma, an unknown, and I felt the floor drop out from under me. Suddenly I was plummeted into a whole new world of despair, confusion, anger, hurt, and heavy sadness.
This also brought other fears to mind. Was there something wrong with me? Would all of my children be affected this same way? Would Ferris be this way too? Should I have any more children at all? Is it too much of a risk? Unfortunately, I still don't have the answers to most of those questions. I know Ferris does not have this, he is such a different child in so many ways, and I have no concerns of him having any issues. I don't know however if this was something passed on to her through myself or my husband, and unless I want to pay out of pocket for the genetic testing (which runs around $3k per person tested according to the insurance statements from Fiona's testing) because the insurance generally won't cover it unless there is a specific reason for it, such as suspecting the individual being tested has an issue themselves. Parental testing is rarely covered, we were told.
The next two weeks really dragged on. I was so anxious to have an answer, to know something, and at the same time, I didn't want to know. I wanted to go back to a time of being in denial, burying my head in the sand and pretending none of this was happening, but that wouldn't do anyone any good in the end. Fiona needed me to be strong, to be her advocate, to get her all the help and resources she could get, to help her develop, learn, and grow to her full potential, and to do that, I had to know what we were facing.
Finally the day came to hear the results in detail, and it wasn't as bad as I expected. She had a very small deletion at 22q13.1 and 4 genes were involved in this deletion, but not much was known about each particular gene or what this meant for her. One gene is associated with a seizure disorder and genetic phenotype, but she doesn't really fit the diagnostic criteria for it. They are going to test her for it anyway, but its just as a precaution more than anything, and I'm not concerned with it. We should know the results of that one soon too.
Basically we were told that this may or may not be causing her delays and Autism, and it may or may not mean anything, and may or may not be inherited, and she may or may not learn to speak, and we may or may not ever know anything for certain, because she is the only one with this deletion. I always knew she was unique, but wow.
Since then, we've started physical, occupational, and speech therapies, and she seems to be showing slow but steady progress, and we are all hopeful for her future, and optimistic that she will talk, that she will grow, flourish, and show the world how smart she truly is.
Since getting Fiona officially diagnosed with Autism, I have wondered if there was a genetic link (more on that in a later blog, of course). I have a cousin with Autism, and my late brother displayed signs of Autism, but he was never diagnosed as such. And I even see in myself some signs/traits of a higher functioning Autism or Aspergers. I've always been socially awkward & inept. I have trouble making eye contact. I have social anxiety, and OCD. There are few gray areas in my world. I like things to be clear, concise, and everything is black or white, with very few shades, if any, in between. I take things very literally, and sometimes miss the punchline or the point. I have trouble understanding how to interact with people at times. I can listen, I can understand, and I can read people very well, but I just don't know how to process that information sometimes or what to do with it.
I have a little story to tell you to demonstrate what I mean by taking things literally. When I was in middle school, some of the other girls were sitting around in class doing each others' make up. The popular girls. I was never one of them, but that was okay. I would always listen to what was going on around me, curious, nosy, whatever you want to call it. I was listening to their conversation, which seldom contained anything meaningful, but it was sometimes entertaining on a slow day. One of them mentioned that she always dotted her is with a heart. But I heard "eyes" instead of "i".
I remember thinking, what the heck is she talking about? The other girls chimed in about how they dotted their eyes with just a dot, or a paw print, or this or that. I was picturing them actually taking some sort of makeup (because they were doing makeup during this conversation, so it must be the topic, right?) like an eye liner, and actually drawing something on the pupils of their eyes. I was shocked! Was this something one was really meant to do with makeup? No thanks! I think I will pass on that one! I thought they were INSANE.
It was YEARS later, when the thought finally occurred to me (and this memory often troubled me), that they were talking about the letter i, not their eyes! I'm glad I decided that this insane practice was not for me! =)
A bit of a funny story, yes? But see, most people I think would have known right away what they meant, but not me. And I'm not dumb by any means, far from it. Not to toot my own horn, but I'm pretty sharp. But little things like this, are lost on me, because I often take things quite literally. I've gotten better at deciphering things, and am not shy to making analogies, or anything like that, but a scenario similar to the one just described in my story, I would probably still misunderstand, and frequently do.
Okay, back to your regularly scheduled programming. <3
So where do I start? I suppose when telling a story, it is always best to start at the beginning. I could go all kinds of Pulp Fiction on you and start somewhere in the middle or perhaps the end, and go backwards, or jump around so much your head spins, but I will try to avoid that. I have a tendency however to talk & write in circles so to speak, so I apologize in advance if my train of thought gets derailed a few times. It happens.
Still with me? Good to hear! <3
When I learned I was pregnant with Fiona, I was elated. She was my little miracle. See, for the longest time, I thought maybe I was incapable of having children. I had always had super wonky cycles with no known cause, and never had any "accidents" otherwise known as unwanted pregnancies, and I was never on birth control. We did take steps to prevent before we were ready, but you always hear about people getting pregnant with these methods anyway, and in 6+ years of being a couple, we never had this issue. I'll spare the details there, but anyway, I thought maybe this combined with my cycles being so irregular meant I would have trouble having kids. When we finally decided we were ready to start a family, imagine my surprise when I became pregnant within the first month of trying. It kind of makes one wonder how so many "accidents" happen, user error I guess, but I digress. Sadly, I lost that first pregnancy, and this added to my fears of never having a child.
I had to take time then to let my body heal, physically & emotionally, and the doctor I saw (not a regular doctor, just the only one who could see me on short notice for aftercare for my miscarriage, I was only 7 weeks along - had not even had my first prenatal visit yet) wanted me to wait through 2 cycles to try again. That took 7 months (yes, like I said, wonky cycles), which was enough time for me to want to try again on an emotional level, so that worked out well. And so we started trying, and once again, within a month, I was pregnant. I was afraid to share my happy news, but at the same time I couldn't keep it to myself either.
I was very nervous to do anything, and wanted to do everything I could to ensure my baby's health & longevity. I did EVERYTHING right. I followed all the rules of what you are and are not supposed to do when pregnant. I didn't eat any forbidden foods. I cut out caffeine altogether. I took my vitamins religiously. I avoided smokers. I didn't drink alcohol. I did every single thing by the book.
See, when you have a miscarriage, in the back of your mind, even though it generally isn't true, you always suspect it was your fault somehow. You must have done something wrong to cause it. If only this... If only that... You become consumed by the "If Only" game. At least, I did. Now, I don't really feel like I did anything to cause it, but you just never know. Maybe I was under too much stress? This is an endless game of self punishment.
As the pregnancy progressed, I became less fearful, but I still followed the "rules". As my belly grew larger, and she became more active, I would sit and watch her move for hours. She was a kicker. Kick, kick, kick. Constantly. It actually hurt a lot of times, but I didn't mind. She was my baby, my blessing, my lifeline, my life, my everything, my world. My pregnancy was full of complications. I seriously could not catch a break. I had placenta previa, which was marginal by the end of the pregnancy, but I worried over it from the time I found out until the day she was delivered. I also had pre-eclampsia at the end. I had SPD, and horrible sciatica. But she was healthy, and perfect, and that was all that mattered to me.
The day before my EDD, I had an appointment, and my blood pressure was sky high, and I was sent to the hospital that day for an induction due to pre-e. When we got there, and we hooked up all the monitors, her heart rate started dropping erratically and everyone was really concerned. I was not in labor, we had not started any pitocin yet, and she was already clearly in distress. The doctor and medical staff all agreed that she would not likely tolerate labor, and I was asked if I wanted to have a c-section. I didn't *want* one, but I was fearful, worried my daughter might die if I was selfish in what I wanted, so it was an easy decision. Yes, just get her out safely, and off we went to the OR.
I was scared. I had never had surgery before. They gave me the spinal block and almost immediately I became a paraplegic and worried that I would never regain feeling in my legs, and had a panic attack then and there. I kept trying to wiggle my toes and when I couldn't it made me panic even more. People with anxiety conditions, be forewarned, spinal blocks suck. But if you don't think about it, its easier to deal with. I came to this conclusion and put it out of my mind, took some deep breaths and was able to calm myself. At 7:13 p.m. she was born, screaming bloody murder, a beautiful 6lb 4.7oz baby girl, seemingly in perfect health. Apgars of 8 & 9. I was kind of expecting a 40lb baby, but apparently I just ate way too much during my pregnancy. Heh.
I didn't get to hold her for 2 hours. I had to be stitched up, and sent off to recovery, and then finally to my room, and after what seemed an eternity, they brought her to me, around 9:15 p.m., and I was in love. You really don't know what love is until you hold your baby in your arms for the very first time. It is instant, and overwhelming, and amazing. She was beautiful. We had a 5 day hospital stay. I was fine the 2nd day, and they even offered to release me, but Fiona was very jaundiced (bilirubin levels got up to 21 at one point) and had to stay, and my insurance would pay for me to stay longer too since I had a c-section, so I wasn't going anywhere without my baby. Finally, we were released, and I took her home.
Breastfeeding was a real struggle with Fiona. She would not latch. I didn't understand why. I did everything I was supposed to do. I tried, and tried, and tried some more. I thought maybe her mouth was too small, or I was defective somehow, but kept trying, and meanwhile pumping and giving her expressed milk in a bottle. After 2 weeks something clicked, and she finally latched on, and I was so happy I cried. It was still a struggle to feed her, because she seemed to tire easily, and would need topped off with expressed milk from a bottle, and this went on the first 2 months of her life, she would nurse for a while, but still be hungry, and take a bottle. Thankfully I had a tremendous oversupply so I didn't need to supplement with any formula.
Finally, when she was 2 months old, she got the hang of nursing better, and no longer needed, or would even take, a bottle. She soon forgot what a bottle even was, and became a total boobaholic. Every time I held her she wanted to nurse. I felt at times like all I was to her was a food bank. Never made me feel bad, or that I wanted to stop or anything, in fact she still nurses, lol, but I felt like we weren't bonding properly. She didn't seem to want to interact with me any way other than nursing.
Looking back, I can say that I always felt something wasn't quite right with her. I couldn't put my finger on it, but I knew she was different, and I kept myself in denial for a while. When she was around 6 months old, and still not properly bonding as I thought she should, I began researching Autism. I put it out of my mind though. Not my baby. I'm just being a paranoid new mommy. She's perfect, everything is great, and I'm being ridiculous. Back to the land of denial with me!
For the most part, she developed fairly normally. She started saying words, and was hitting most of her milestones on time up to a certain point. She seemed to have trouble with sitting up though, and was 9 months old before she could really do it at all, and only for short times, and it took a LOT of work to get there. But, 9 months was on the end range of normal for sitting up, so we weren't overly concerned. We kept waiting for her to crawl, but that one never happened. Again, some babies don't crawl and just go straight to walking, and she got around by scooting on her back, so again, no one was concerned. She had a vocabulary of about 20 words when she was a year old, and we were impressed with our little genius. Sure, she was lagging on some physical milestones, she wasn't walking yet, or standing unassisted (she could stand holding on to things, but not without), but she had a pretty good vocabulary, so surely that was why, she was just focusing on the intellectual rather than the physical. Again, no one was concerned.
At 15 months, she stopped picking up new words, and stopped saying the ones she already knew. By 18 months she was almost completely non verbal. She would say "Boob" and "Yeah" and "Mama" and "Dada" and that was it really. At 20-21 months she finally started walking. Hallelujah! Very late, but hey, she was walking. Maybe that was why she wasn't talking at all. At this point, "boob" was it. She had just shifted her focus to the physical was all...
She was extremely clumsy. She walked with her toes turned inward, and had an odd gait. But she was walking. Her balance and coordination seemed pretty crazy, and we suspected maybe she was having an inner ear problem, and maybe that was why she wasn't talking anymore. Maybe she just couldn't hear properly! We took her to a new doctor to have her ears checked, and they said her ears were fine (they didn't do the audio tests, just looked at them, but said there was no fluid, no problem), and that doctor thought maybe she had lead poisoning because of how awkward she was.
When we went to her regular pediatrician for her 2 year checkup, I broke through my denial. It was obvious to me at this point that my baby had Autism, and I needed to get her help. I showed 2 videos I had on my phone of Fiona exhibiting stimming behaviors to her doctor, and told her about all of the language regression, and milestone delays, and we did the MCHAT screening, and were referred to a specialist. I cried that day, both out of sadness, and relief. I had taken the first step, and felt a weight lifted off my shoulders, and now I just needed to follow through, one step & one day at a time.
There is more to tell, of course, nearly another year of moving forward, but I need a break, and I suspect you do as well, so I will save that for another post. <3
Thanks for reading. =)
Don't take me wrong, of course. I love my daughter more than life itself and I really wouldn't change her for the world. I am still struggling with accepting her disorder, it is a fresh wound, and somedays I still break down and cry a river of tears, and feel so lost, and hopeless at my worst, but it doesn't mean I love her any less. The more I read the writings of other parents of Autistic children, the more I know I am not alone in feeling this way, and struggling with my emotions as I do. It is hard. Damned hard.
Every day, I wake up, pull myself out of bed, and think, maybe today is the day that she will talk. And I make myself get around and start my day,and go to bed thinking, maybe tomorrow... Every day she amazes me with how smart she truly is, and she shows me this constantly, even without any verbal communication, she gets her needs and wants across to me. She is a problem solver, a thinker, and demonstrates pure brilliance every single day. Every day, I sing to her , "You are my sunshine..." and it is true. But some days, most days, I still feel as if I'm sitting in the dark, grieving for the child I planned, the future that child had, the child I did not have, while still loving the child I have instead. This is something I struggle with as well. I love my daughter fiercely, and I feel guilty for even thinking in terms of grief, but I can't deny it, nor can I explain it if you don't already understand the idea of ambiguous loss.
So here I sit, seeking sunshine, with the brightest little girl in front of me, staring off to my right, unable to look me in the eye.