I'm sure there are other posts out there like this somewhere...but I decided to write my own. Dealing with a child with unexplained/explained developmental delays is TOUGH. Sometimes, well meaning or ill informed friends and family will say things...not things meant to hurt or offend, but they are like rubbing salt in a wound. Nothing makes you feel worse as a parent than people, who mean well, making statements that make you feel like you're a horrible parent, crazy, or completely alone because it just seems like NOBODY around you gets it...or cares to even attempt to get it.
So...here is a list of things you should NEVER say to a friend who is dealing with or worried about developmental delay in their child:
1. Some kids just develop slower. Why can't you wait it out and see? Why are so many parents diagnosis happy these days?
These are some of the first statements I heard from well meaning friends as I openly discussed some of the issues we were having with Faith on a Facebook thread. I knew I had several friends dealing with Autism and other developmental delays in their children, and I wanted advice, I needed to know where to go next. That was the quickest and easiest forum I had for asking questions and getting help. Faith was 18 months old and wasn't speaking a word. Her babbles were few and far between and never went beyond vowel sounds. It was incredibly frustrating to have friends who WERE being supportive and suggesting I contact my state's Early Intervention Program be verbally shut down by other friends who felt that I was being overly dramatic. Bottom line: You're NOT living with your friend. If you do have interaction with their child, its generally brief. They are the ones who are with them 24/7 and they are the ones who go to play dates, church, and other meeting places and are able to see the differences between their child and another person's child of the same age. Be supportive. Suggest they contact their state's Early Intervention program or (if the child is older) the school district for testing, if they are that confused and nervous about it. Empathize...ask questions. Sometimes, it helps that friend, who is struggling, to process things. Having to explain issues to friends will help them figure out how explain it to a pediatrician or case worker through their state's early intervention program later on. Encourage them to get help from professionals who can either put their mind at ease, or start them on the path to getting the tools they need to help their child succeed. In the end, EARLY INTERVENTION is the key to a child being the most successful. Concerns are nothing to be put aside, or to be "waited out". The sooner your friend seeks a professional opinion, the sooner they will know if there truly is a delay and be able to start working on developing the tools they need. States wouldn't be required to have Early Intervention programs if they were useless. I promise, its NOT a waste of tax payer dollars. I'm sure that for every kid that is screened and found with no problems, there are 3 or 4 that are found with delays that are helped and are given tools to move in the right direction. Even if you're right and its nothing to be concerned about, your friend's peace of mind is worth the time it takes to have their child screened to be sure there is nothing going on.
2. Maybe you just need parenting classes.
I, personally, haven't heard this one...but my sister in law has-multiple times. They are currently working out whether or not her daughter has Asperger's or ADHD. She has heard it from pediatricians and friends alike. Finally, in hearing our struggles with Faith and seeing the similarities between her and her daughter, she decided to go to her pediatrician and be a little more demanding for help. Chances are, the person that you're suggesting this too HAS taken parenting classes...several...and NOTHING seems to be working. So, the next time your friend is commiserating about the epic 2 hour temper tantrum that their child had as they were trying to get the grocery shopping done, it may be best to just say something like, "I'm so sorry! That must have been tough. I don't know if I would have or could have done anything differently." You can even offer advice of things that work with your kids, but don't be offended if your friend says, "Yeah, I've tried that. It doesn't work." Just move on... don't probe or offer more advice. Just empathize and listen.
3. Don't worry about it. They will be fine.
This phrase goes hand in hand with the first phrase...but its incredibly patronizing...even though I know that the people that said it to me didn't mean it to be. Telling a mother or father that has had their concerns about a delay confirmed NOT to worry is like telling a dog not to eat the t-bone steak you just laid on the grass in front of them...it is pretty much impossible. They are dealing with a lot of information at once, they are learning a lot of "lingo" and, more importantly, they are wondering how much this delay is going to affect their child as they move forward through their lives. Yes, that child will be fine...but what version of fine will they be? The version where physically they are healthy, but mentally they ALWAYS struggle. Will they be able to make friends? Will they be accepted by their peers in their class? Will they be able to be in a mainstream classroom? There are lots of unknowns that only time will divulge the answers to. Hearing someone say, "Don't worry about it. They will be fine." makes a very nervous and worried parent feel VERY alone. It almost seems to them that their friend doesn't care to hear their struggles. Even if you can't offer advice, you will never know how valuable a sounding board can be to someone who is struggling to parent a delayed child.
4. *Eyeroll*
I get this ALL the time... Faith inevitably will have at least 1 melt down if shopping trips aren't kept quick and simple. We do everything we can to keep her mind off of how uncomfortable she is, but sometimes we just aren't successful. Faith will drop to the ground and start her meltdown...she will scream, kick, bite,throw her shoes, do the limp noodle so that you drop her...and then...it happens...passersby stop and roll their eyes, or loudly say something like "someone needs to learn to control their kids"...I've been fortunate not to have had store security called on me to make sure I'm not abusing my children...but I have friends that have. All I am asking is that you try to be empathetic as you walk through the store and see a poor mother or father dealing with a child who is in full on tantrum mode...You don't know what led up to the tantrum, and you certainly don't know what issues they are dealing with that contribute to the severity of the tantrum. Either quietly walk by, or smile and give an encouraging look and move on. I promise, the parent is already embarrassed enough that they let it get to melt down point in public as it is...they are likely tired and frustrated. I promise, nothing will make a tired mamma or daddy turn on you faster than if you decide to put your two cents in via an eyeroll or a snide remark. You have NO IDEA how many times I want to say, "Have you ever parented a child with Autism? Then keep your mouth shut!" to these passersby (and actually have because I'm at the breaking point.) You never know what the load on someone's back is. Try to be less judgmental.
5. Its just a phase (the age) they will grow out of it.
Yes, your toddler may have had similar struggles when it comes to eating, bathtime, you name it...but just because your toddler grew out of it, doesn't mean that your friend's child will...and in many cases it takes AGGRESSIVE therapy to help a child move beyond delays.
I will use how I've been hearing this phrase a lot as an example. Faith has severe sensory issues and delays. She tries her best to cut out any and all sensory input because the world is just too much. In no case is this more true than with her eating. Faith isn't a picky eater, she is a poor eater. (Yes, there is a distinction) Picky eaters will be picky about the items they eat, but will still try new items. When they get sick of eating something, they generally replace it with something else on their list of foods they eat. Poor eaters are actually afraid to eat...(how would that be?) The sensory input from food is just too much for them. Not only do they refuse to try anything that looks different from how they normally eat it, they have a VERY short list of foods they will actually eat. The danger comes because instead of replacing those "safe" foods with another new favorite when they get sick of them, they eliminate the "safe" food when they get sick of it from their diet all together and the list of what they will actually eat gets shorter...and shorter...and shorter... As an example, for the last 2 weeks, her "safe" foods like Mac and Cheese, chicken nuggets, and hot dogs have been completely eliminated from her list. She flat out refuses to eat for most of the day. I've been lucky if I've been able to get her to eat potato chips and popcorn.
All along, as I've voice concerns about her eating habits and how her sensory issues have been affecting her negatively, I've heard friends say, "Its just the age", "She'll grow out of it", "All toddlers do that". I've tried to take heart in these ideas, but when you KNOW something isn't right, it definitely makes you feel very alone to have friends pish posh it and say that its normal. However, in working with our Occupational Therapist, I've come to realize that this SO isn't the case for us...and its going to be a very long road.
I have to make lists of yes, no and maybe foods...we have to pick a "no" food and gradually introduce it. I have to first just leave it out on the table so she can tolerate being in the same room with it. Our OT says that this process can take weeks to work...I have to then wait for her to decide to play with the food, and, hopefully, eventually, she will at least put it to her lips and give it a chance... when she refuses to eat,its not as simple as leaving her at the table until she's taken a few bites or until bedtime because she is actually AFRAID of the food on her plate.
Our OT is asking me to do the hardest thing I will ever have to do, I will have to act like I just don't care. When she wants down, I have to act like its no big deal that she hasn't even taken a bite of her food, I have to use hand over hand techniques to get her to scrape her plate into the garbage, and then make the choice as to whether I will offer her an alternative, but offer it in a way that she doesn't believe she is being catered to...this way, she will gain trust with me and my choices of food that I put in front of her so she will be less afraid of it and , hopefully, eventually give it a chance.
It will be a long road. She won't grow out of it. Its not just a phase. I literally have to teach her that she doesn't need to be afraid of the food on her plate and the sensory input that it gives her.
So the next time your friend with a developmentally delayed or special needs child talks about something that seems similar to what your child went through, instead of saying its a phase and trying to reassure them of something that you don't necessarily know is the case, be empathetic. Its okay to compare what you went through with your child from time to time. It helps to know that the struggles can be universal to some extent. Sometimes, we just need a friend to listen to us as we complain and process our struggles.
6. Why are you so bound to "label" your child? Why do you want to?
This one is the one that irks me the most because it, in general, shows the largest lack of understanding or wanting to understand. It shows that you already have preconceived negative notions about children with special needs. I get it. Many people see special needs kids and think that they don't exactly fit in... I suppose I can see the confusion as to why anyone in their right mind would want to shuffle their child towards that group; however, when you're actually LIVING the life of a parent of a child with special needs, you see this world and the value of the label in a whole different light.
No, a diagnosis won't change Faith. It won't change where she is developmentally physically or mentally.
However, a diagnosis could open up the possibility of more targeted therapies towards the form of Autism or delay she has. A diagnosis opens up doors for getting the assistance we need to continue to help her to move forward. A diagnosis will give us the ability to sit down with school administrators and teachers when the time comes to come up with the best course of action to help her be a successful student and be the best version of herself she can be no matter where she is developmentally at that point. A diagnosis gives teachers the information they need to know how to best handle her in the classroom, to help her when she struggles, to praise her when she succeeds, and to push her when she needs to be challenged.
Diagnosis isn't a bad thing. The label isn't a dirty word. We need to end the stigma that accompanies the idea of a child having special needs. EVERY child has special needs, some children have more needs than others. We need to teach our children to embrace one another, regardless of the differences that divide them, and find the ties the unite them instead. We can start that process ourselves by giving up our preconceived notions about labels.
This label I'm working towards has been a long time coming. It has been a frustrating and tiring process. Its a process that will continue even after we've figured out the cause of our sweet Little Diva's problems and have a name for it. The label is so much more helpful than hurtful. The more people that can see that, the easier it will be to teach our children that they don't have to be afraid of anyone that is different, that they don't have to discriminate against or leave out a child because of a label. That they can all be friends and help one another to succeed. The world doesn't have to be "dog eat dog." Think about how much more amazing it would be if we could teach our children to work together.
In the end, I'm sure this post sounds like a rant of all the things I'm sick of hearing...and it really is, I'll admit that...However, I know I can't be alone in this process. I'm sure there are other moms and dads out there dealing with kids with delays, disorders, and diseases that get really tired of hearing people say these same "go to phrases" over and over again.
To make a long story short, try to put yourselves in your friends' shoes. Instead of going with your knee jerk reaction, try to assess if your friend is in a place where they are going to be okay hearing one of the "go to phrases" or if its just going to make them feel more isolated and alone.
We do feel alone. We do feel isolated. We feel like our friends probably get sick of hearing us talk about our struggles and we get to the point where we try to keep our mouths shut; which isolates us even more. We start to struggle in silence rather than feel the salt on the wound when people give us the automatic "go to responses" for our struggles.
We spend so much time advocating for our child, that we end up needing an advocate for ourselves.
Be gentle with us. Support us. Laugh with us. Cry with us. Celebrate with us...we need friends who care about US...and caring about us means that you, in turn, also need to care about our child. Try to take some time to understand what we're dealing with on a daily basis.
Above all, we just need to feel like we're not in this alone. We need to feel like our friends could pick up the yoke for us and help us carry our burden if we needed them to. By saying the "go to phrases" that we hear all the time you are subconsciously sending us a message that you don't want to hear it anymore...and if that really is the case, that is fine...but if that isn't the case, dig a little deeper. Be our sounding board. Be our advocate, because, heaven knows, between therapy, doctor's visits, coordination of education plans with the school district, being wives and husbands, and taking care of any other littles we may have at home, we don't have time to advocate for ourselves. Remind us to take a break. Give us reasons to laugh. Give us reasons to forget for a few hours everything we have to juggle on a daily basis. I promise, we will do the same for you- even with everything else on our plates.
Hugs and loves until next time, darlings.
Thursday, January 30, 2014
Wednesday, January 29, 2014
Meal Planning... 2 more weeks of Dinners! :)
Sorry this post is a little late. I've been crazy busy these last few weeks between Autism group classes, therapy for Faith, and CLOSING ON OUR HOUSE...yep...we're home owners...
Unfortunately, we can't live in our house until the end of February. We closed much faster than we thought we would, and we decided to be nice to the sellers and let them have some more time since their house is nowhere near ready. They were hoping to have at least their garage finished by the end of February so they could store all their big stuff there and not have to worry about carting it to storage in the house where they will be living with family members until their house is done and then having to cart it back when their house is done. They actually asked if they could rent from us for a few months, but that won't work for us, or for the type of loan we have...so we found a happy medium.
So...here is the meal planning list for the next two weeks. Happy cooking, darlings! (Note, I didn't give links for the taco soup recipe or lasagna recipe. Most people generally have their own recipes. If I have time, the day I make them, I will share mine. As far as the Cowboy Beans are concerned, the recipe is on my old recipe blog, and almost unreadable because of an issue I'm having with the HTML there. I will repost it when I make it. I'm still waiting on the recipe for French Dip Sammies from my sister, I love her recipe and she has yet to send it to me, and I just got the Carne Asada recipe from a friend, but she sent it via a Facebook message, so it looks like another recipe I have to post when I make it. I'm sure you're all smart enough to know how to find your own if you're dying to make it, though...LOL)
1. Smothered Pork Chops
2. Best Crock Pot Chicken
3. Chili's Copycat Cajun Chicken Pasta
4. Teriyaki Chicken
5. Crispy Onion Chicken
6. Pizza Rolls
7. Taco Soup
8. Lasagna
9. Wendy's Spicy Chicken Filet Copycat
10. Meatball Subs
11. Cowboy Beans
12. French Dip Sammies
13. Carne Asada
14. Sweet BBQ Chicken
Unfortunately, we can't live in our house until the end of February. We closed much faster than we thought we would, and we decided to be nice to the sellers and let them have some more time since their house is nowhere near ready. They were hoping to have at least their garage finished by the end of February so they could store all their big stuff there and not have to worry about carting it to storage in the house where they will be living with family members until their house is done and then having to cart it back when their house is done. They actually asked if they could rent from us for a few months, but that won't work for us, or for the type of loan we have...so we found a happy medium.
So...here is the meal planning list for the next two weeks. Happy cooking, darlings! (Note, I didn't give links for the taco soup recipe or lasagna recipe. Most people generally have their own recipes. If I have time, the day I make them, I will share mine. As far as the Cowboy Beans are concerned, the recipe is on my old recipe blog, and almost unreadable because of an issue I'm having with the HTML there. I will repost it when I make it. I'm still waiting on the recipe for French Dip Sammies from my sister, I love her recipe and she has yet to send it to me, and I just got the Carne Asada recipe from a friend, but she sent it via a Facebook message, so it looks like another recipe I have to post when I make it. I'm sure you're all smart enough to know how to find your own if you're dying to make it, though...LOL)
1. Smothered Pork Chops
2. Best Crock Pot Chicken
3. Chili's Copycat Cajun Chicken Pasta
4. Teriyaki Chicken
5. Crispy Onion Chicken
6. Pizza Rolls
7. Taco Soup
8. Lasagna
9. Wendy's Spicy Chicken Filet Copycat
10. Meatball Subs
11. Cowboy Beans
12. French Dip Sammies
13. Carne Asada
14. Sweet BBQ Chicken
Tuesday, January 21, 2014
The Absurdity of Kid Gloves
Last week, we went to Audiology to confirm that Faith has no problems with her hearing so we could move forward in her Autism diagnosis.
The Audiology team we met with at Utah State University was VERY kind and they were great with Faith...they were concerned they would be able to get Faith to do the testing they needed since she doesn't respond when you point at something and try to get her to look...however, after about 15 minutes of the sound field test, she figured it out.
Did it take longer for them to get results than it normally does. Yes. They admitted that...but we got results.
Faith is hearing normally in all fields. They did do a more specific OAE test (its a monitor that they put into their ears via a setup that is reminiscent of earbud headphones. It sends a signal up the cochlear nerve and tests how long it takes to come back, if it comes back at all.) Faith did fail in the upper registers, but she also had a lot of wax in her ears and passed on those registers during the sound field test.
She hears...we knew she could...but its nice to have it confirmed.
I did feel a little awkward as they were delivering the results. They kept looking at me, as if they were waiting for me to cry. They were handling me with kid gloves...
I get that its touchy. You're giving what should be good news- your child can hear. YAY!...but it really is kind of bad news because it means that your child is likely Autistic or suffering from a rare neurological disorder.
I tried to smile politely and show them that I was trying to be positive about these results.
Would I have loved for the therapy team we've been working with to have been wrong and to have found out that a hearing aid or a cochlear implant would solve our problems with some extra speech therapy?
ABSOLUTELY
But I also knew that the likelihood of this would be very, very small given the progress we've made and the fact that I have seen her respond to sounds and knew she could hear them.
I was prepared to hear them tell me she could hear.
Her ears work! What a huge blessing... Now, we move forward to get the rest of our diagnosis, some more answers, and some more help.
Regardless of the results, Faith would have and has remained Faith. Our Little Diva.
Do I have my moments of grief and despair? Of course, I do. But I would rather move forward with positivity. Her ears work. That is one question answered. Now, because we have that question answered we can continue to move forward to get the resources we need to help her grow, develop, and work to become the best version of herself that she can be...which is going to be pretty darn amazing...since she is pretty darn amazing as it is.
We followed up with her pediatrician today...again, he waited for the tears...I was treated with kid gloves. I guess I should get used to it.
But I refuse to let this process or a diagnosis define our family, define me, or drag me down into a gulf of despair that I can't pull myself out of.
I have full faith that God doesn't give us anything that we can't handle without his help. Will he test my limits? Jeff's? Faith's? Phillie's? The new baby on the way's? YES. Life is a test. You aren't going to get out of it without a little discomfort...but the moments that change us, that define us, that make us better, are the moments that we turn to him in prayer and ask for understanding, for knowledge, and for the power to make it better...and He will always help us and deliver because he didn't mean for us to go through this life alone. He sent us a Savior, or brother and Redeemer, Jesus Christ, the make the ultimate sacrifice, to suffer ALL things, so we could not only have an example to look to when times get rough, but also so we can turn to him as an advocate as we pray in His name for help.
We will be alright because we are on the Lord's side. We will be alright because we have faith that he will help us bear this burden.
His yoke is easy and his burden is light.
How comforting? Don't you agree?
Could I choose to take an attitude of loneliness, that I am doing this alone, that I have no help, that no one understands? Yes, I can. But I choose not to. I choose the yoke of Jesus. I choose to believe that I have a brother and father in heaven that are looking out for me and my babies and that they will get us through this, one step at a time.
The pediatrician is going to talk to the local developmental psychologist. The local guy is affiliated with my pediatrician's office, but does most of his work up at a clinic at the university that he runs training future developmental psychologists...the problem? That clinic, because it isn't completely run by licensed doctors, is not covered by insurance. They do have a sliding fee scale, and I'm not sure where we fall on that, but in talking to a friend that didn't qualify for any of the monetary assistance up there, I know that, without help from the sliding fee scale, or insurance, we are looking at $2500 to do the testing up there. Unfortunately, we cannot afford that kind of money. I made this clear to my pediatrician. They are going to ask the local guy if he would be willing to do all or part of the testing at the office instead of the clinic so that insurance could cover most of it. We will see how he responds. If he says he will only do the work at the clinic, we will gt a referral to Primary Children's Hospital and see a specialist there.
One way or another, we will see someone, we will get answers, and we will move forward.
In other news:
Had my 16 week appointment (at 17 weeks) We don't get to find out the gender of the gummy bear until the day before Valentine's Day...sheer TORTURE for me... since we're in the midst of closing on the house, and I have NO little baby stuff ( I sold it all before the move to Wyoming since we wouldn't have a place to store it and I didn't know when we would need it again) I am a little concerned about being able to afford everything we will need for the new baby. Daily, I make mental lists and note how much the items will cost... Car seats have REALLY gone up in price since we bought our first one in 2011...HOLY COW! I've had some people suggest buying a used one, but I refuse to buy a used car seat. The American Academy of Pediatrics warns how unsafe it is. The plastic bends and deteriorates over time. You don't know what kind of drivers the previous owners have been, and they can tell you that it was never in an accident, when in reality it was in a "little" rear end collision that they didn't think was notable (as an example.) I choose safety... even if safety is going to cost us $150 or more *gulp*
I do plan on utilizing yard sales and consignment stores to buy clothing items, so I know in that way, I will save.
We also either need to buy another toddler bed to move Phillie into or another crib so the new baby will have a place to sleep...we will cross that bridge when the time comes. Fortunately, we still have our pack and play with the bassinet and newborn napper attachment that we scored at a yard sale before we had Phillie and the baby can sleep in that for a while, but I always prefer to move them into a crib (since its sturdier) once they're no longer in the room with me (Jeff usually moves them into their own room around 2-3 months because he's spent 2-3 months with a wife who hasn't slept a wink since every little noise wakes her up...LOL...he says he does it for my sanity, but I think he does it for his best interests as well...)
We will also need a new baby monitor. I am currently trying to decide if its worth the extra money to get the video monitor...I definitely know I want a digital one this time since there is less chance of interference and static...and I know that will set us back $50-90 depending on the brand we buy (unless I can find a used one...)
All in all...things are going well with the pregnancy. The diabetes still sucks. I still hate giving myself shots at night, and I REALLY hate that I feel like I have to make 2-3 separate meals most of the time because I can't have what everyone wants. I will admit that we're probably eating out more than we should, but that has more to do with the fact that I'm exhausted at the end of the day and REALLY not in the mood to cook 2 different meals or 1 meal with a separate option for sides for myself... but I'm getting better at it, and being back in the meal planning game has helped a lot.
I'm smaller this pregnancy than I've been with either of my other pregnancies by this near halfway mark... its fun sometimes because I think of how much less weight I will have to lose after I have the baby...but other times it stinks bigtime because I feel like I don't look pregnant, I just look fat...but I push those thoughts away as soon as I have them. This mamma ain't got no time for negativity.
I got into a fight with our ottoman on Saturday night about 2 minutes after Jeff got home. We thought my toe or my foot was broken, but I waited to go in until Sunday morning when things still weren't better. The doc at the instacare was shocked to see on the x-rays that it wasn't broken. He said its probably just a REALLY bad sprain. They gave me a boot to wear when I have to go outside the house for long periods of time or when I have to be up and about for a long period, to stabilize my foot so I can walk... long story short- Ottoman 1...Brittany 0...I get to spend the next 2-3 weeks limping around in my boot until things feel better. YAY... Oh well, at least its not broken, right? Less time in the boot and I will (hopefully) be back on my feet sooner than I would have if it had been broken.
Jeff is still loving his job. He travels frequently (which is hard for me, but we get paid very well for him to do it, which makes it easier to meet our goals to pay off debt faster or to have some money to spare for savings.) He has a bitter, nasty cold right now. The poor guy really wanted to stay home today...and he does have PTO time saved up, so he could have, but he is being so awesome and being a trooper so that we can have the PTO time for after the baby gets here, or in case we need to take it to take Faith to Salt Lake for testing.
We are currently trying to plan our Valentine's Day. We are debating getting a hotel and going out of town, but I have NO CLUE who we will leave the kids with when we do it...I'm thinking we may need to plan it for after Valentine's Day so we don't intrude upon one of our sibling's festivities so we can get away. If we make it out- Expect a post! LOL Jeff and I never had a honeymoon, we thought it would be best to save the money, so we are looking forward to the idea of a weekend away with just the two of us.
Phillie is ADORABLE...as usual...no surprise there. The Divine Cupcake has perfect chubby, cherub cheeks that I can't help but want to kiss as much as possible. She is talking up a storm. Not sure if I already told this story here or not, but the other day, I was sitting on the couch, exhausted and tired. My eyes were closed...the little stinker pulled herself up on the couch, plopped herself into my lap and grabbed my cheeks. I looked up into her hazel/blue eyes and she said, "How you doin'?" I said, "I'm doing fine, my love, how are you?" She sighed and looked up like she was mimicking her tired mamma and said, "I good"...and then proceeded to give me tons of kisses and loves.
Yesterday, we were getting in the car to go home after going to the store to pick up a few things. I buckled her in and she smiled at me and grabbed my cheeks and said, "I yove you (I love you)" and gave me a big kiss. I smiled and said I love you back and kissed her back...but she kept holding onto my cheeks...and she said it again, "Yove you" and gave me a kiss...I said it back and squeezed her...but she still didn't let go...she did this 4 times...I guess she REALLY wanted to get the point across that she loved me...and I was SO tired...I definitely needed to hear it. I love how she always seems to say what I need to hear. She talks so randomly, and never when you ask her to say anything...but when she does talk, she definitely makes it worth hearing.
She was NOT happy at the doctor's office today. She wanted to go out in the waiting room and play with the other kids...sorry poppet, not an option without someone to watch you. She screamed for the first 10 minutes we were in the room. Bless our pediatrician's nurse. She was so patient and kind about it all. I finally calmed her down with a fruit roll up that I'd left in the diaper bag after church on Sunday. Needless to say, 1 flu shot later (she got her flu shot booster today while sissy was getting her vaccinations updated), she was out like a light in the car as we went to go get daddy for lunch....and now she won't go down for her nap...I hear her screaming "Yay" and "Wee!" from her bedroom as I'm typing this and wonder if I should go in to check on them and stop whatever it is they're doing...however, I also know that i put all the toys in the closet, so chances are, Faith has once again turned Phillie's bed into a trampoline with guard rails to hold onto and Phillie is enjoying being bounced up and down over and over again as Faith jumps, completely unaware that she is actually playing with her sister.
Faith had 2 shots and was a trooper as well. They EARNED those french fries we got with lunch...LOL
(Hi, my name is Brittany and I feed my kids cholesterol filled, fattening foods...and I really don't care what people think about it. ha ha. If it makes those of you that are completely disgusted feel any better, I will be sure to give them some fruit with dinner...it all evens out, right?)
Lunch was short today...too short. But it was nice to see Jeff and enjoy some time with my hunky man. He really is the sexiest man alive...I should notify People magazine that they were WAY off last year when they picked whoever they picked (I think it was Adam Lavigne from Maroon 5... I don't really pay too much attention, since I know they're always going to be wrong.) My favorite look of his is the smile he gets on his face when he is completely amused by something the kids are doing...that smile would sell dirt on the bottom of some designer shoes... seriously, model potential.
Anywhoo, darlings. Onward and upward. Life continues to move forward. No sense in stopping to wallow in the hard stuff because it just makes it take longer to get through.
Stay positive, stay prayerful, and know that I love you, wherever you are, whoever you are, for actually caring about my random life stories (and maybe you just love my meal plans and deal with the random stories in between...but thanks for that too.) Thank you for your prayers and warm thoughts. They have been felt.
Hugs and loves until next time, darlings.
The Audiology team we met with at Utah State University was VERY kind and they were great with Faith...they were concerned they would be able to get Faith to do the testing they needed since she doesn't respond when you point at something and try to get her to look...however, after about 15 minutes of the sound field test, she figured it out.
Did it take longer for them to get results than it normally does. Yes. They admitted that...but we got results.
Faith is hearing normally in all fields. They did do a more specific OAE test (its a monitor that they put into their ears via a setup that is reminiscent of earbud headphones. It sends a signal up the cochlear nerve and tests how long it takes to come back, if it comes back at all.) Faith did fail in the upper registers, but she also had a lot of wax in her ears and passed on those registers during the sound field test.
She hears...we knew she could...but its nice to have it confirmed.
I did feel a little awkward as they were delivering the results. They kept looking at me, as if they were waiting for me to cry. They were handling me with kid gloves...
I get that its touchy. You're giving what should be good news- your child can hear. YAY!...but it really is kind of bad news because it means that your child is likely Autistic or suffering from a rare neurological disorder.
I tried to smile politely and show them that I was trying to be positive about these results.
Would I have loved for the therapy team we've been working with to have been wrong and to have found out that a hearing aid or a cochlear implant would solve our problems with some extra speech therapy?
ABSOLUTELY
But I also knew that the likelihood of this would be very, very small given the progress we've made and the fact that I have seen her respond to sounds and knew she could hear them.
I was prepared to hear them tell me she could hear.
Her ears work! What a huge blessing... Now, we move forward to get the rest of our diagnosis, some more answers, and some more help.
Regardless of the results, Faith would have and has remained Faith. Our Little Diva.
Do I have my moments of grief and despair? Of course, I do. But I would rather move forward with positivity. Her ears work. That is one question answered. Now, because we have that question answered we can continue to move forward to get the resources we need to help her grow, develop, and work to become the best version of herself that she can be...which is going to be pretty darn amazing...since she is pretty darn amazing as it is.
We followed up with her pediatrician today...again, he waited for the tears...I was treated with kid gloves. I guess I should get used to it.
But I refuse to let this process or a diagnosis define our family, define me, or drag me down into a gulf of despair that I can't pull myself out of.
I have full faith that God doesn't give us anything that we can't handle without his help. Will he test my limits? Jeff's? Faith's? Phillie's? The new baby on the way's? YES. Life is a test. You aren't going to get out of it without a little discomfort...but the moments that change us, that define us, that make us better, are the moments that we turn to him in prayer and ask for understanding, for knowledge, and for the power to make it better...and He will always help us and deliver because he didn't mean for us to go through this life alone. He sent us a Savior, or brother and Redeemer, Jesus Christ, the make the ultimate sacrifice, to suffer ALL things, so we could not only have an example to look to when times get rough, but also so we can turn to him as an advocate as we pray in His name for help.
We will be alright because we are on the Lord's side. We will be alright because we have faith that he will help us bear this burden.
His yoke is easy and his burden is light.
How comforting? Don't you agree?
Could I choose to take an attitude of loneliness, that I am doing this alone, that I have no help, that no one understands? Yes, I can. But I choose not to. I choose the yoke of Jesus. I choose to believe that I have a brother and father in heaven that are looking out for me and my babies and that they will get us through this, one step at a time.
The pediatrician is going to talk to the local developmental psychologist. The local guy is affiliated with my pediatrician's office, but does most of his work up at a clinic at the university that he runs training future developmental psychologists...the problem? That clinic, because it isn't completely run by licensed doctors, is not covered by insurance. They do have a sliding fee scale, and I'm not sure where we fall on that, but in talking to a friend that didn't qualify for any of the monetary assistance up there, I know that, without help from the sliding fee scale, or insurance, we are looking at $2500 to do the testing up there. Unfortunately, we cannot afford that kind of money. I made this clear to my pediatrician. They are going to ask the local guy if he would be willing to do all or part of the testing at the office instead of the clinic so that insurance could cover most of it. We will see how he responds. If he says he will only do the work at the clinic, we will gt a referral to Primary Children's Hospital and see a specialist there.
One way or another, we will see someone, we will get answers, and we will move forward.
In other news:
Had my 16 week appointment (at 17 weeks) We don't get to find out the gender of the gummy bear until the day before Valentine's Day...sheer TORTURE for me... since we're in the midst of closing on the house, and I have NO little baby stuff ( I sold it all before the move to Wyoming since we wouldn't have a place to store it and I didn't know when we would need it again) I am a little concerned about being able to afford everything we will need for the new baby. Daily, I make mental lists and note how much the items will cost... Car seats have REALLY gone up in price since we bought our first one in 2011...HOLY COW! I've had some people suggest buying a used one, but I refuse to buy a used car seat. The American Academy of Pediatrics warns how unsafe it is. The plastic bends and deteriorates over time. You don't know what kind of drivers the previous owners have been, and they can tell you that it was never in an accident, when in reality it was in a "little" rear end collision that they didn't think was notable (as an example.) I choose safety... even if safety is going to cost us $150 or more *gulp*
I do plan on utilizing yard sales and consignment stores to buy clothing items, so I know in that way, I will save.
We also either need to buy another toddler bed to move Phillie into or another crib so the new baby will have a place to sleep...we will cross that bridge when the time comes. Fortunately, we still have our pack and play with the bassinet and newborn napper attachment that we scored at a yard sale before we had Phillie and the baby can sleep in that for a while, but I always prefer to move them into a crib (since its sturdier) once they're no longer in the room with me (Jeff usually moves them into their own room around 2-3 months because he's spent 2-3 months with a wife who hasn't slept a wink since every little noise wakes her up...LOL...he says he does it for my sanity, but I think he does it for his best interests as well...)
We will also need a new baby monitor. I am currently trying to decide if its worth the extra money to get the video monitor...I definitely know I want a digital one this time since there is less chance of interference and static...and I know that will set us back $50-90 depending on the brand we buy (unless I can find a used one...)
All in all...things are going well with the pregnancy. The diabetes still sucks. I still hate giving myself shots at night, and I REALLY hate that I feel like I have to make 2-3 separate meals most of the time because I can't have what everyone wants. I will admit that we're probably eating out more than we should, but that has more to do with the fact that I'm exhausted at the end of the day and REALLY not in the mood to cook 2 different meals or 1 meal with a separate option for sides for myself... but I'm getting better at it, and being back in the meal planning game has helped a lot.
I'm smaller this pregnancy than I've been with either of my other pregnancies by this near halfway mark... its fun sometimes because I think of how much less weight I will have to lose after I have the baby...but other times it stinks bigtime because I feel like I don't look pregnant, I just look fat...but I push those thoughts away as soon as I have them. This mamma ain't got no time for negativity.
I got into a fight with our ottoman on Saturday night about 2 minutes after Jeff got home. We thought my toe or my foot was broken, but I waited to go in until Sunday morning when things still weren't better. The doc at the instacare was shocked to see on the x-rays that it wasn't broken. He said its probably just a REALLY bad sprain. They gave me a boot to wear when I have to go outside the house for long periods of time or when I have to be up and about for a long period, to stabilize my foot so I can walk... long story short- Ottoman 1...Brittany 0...I get to spend the next 2-3 weeks limping around in my boot until things feel better. YAY... Oh well, at least its not broken, right? Less time in the boot and I will (hopefully) be back on my feet sooner than I would have if it had been broken.
Jeff is still loving his job. He travels frequently (which is hard for me, but we get paid very well for him to do it, which makes it easier to meet our goals to pay off debt faster or to have some money to spare for savings.) He has a bitter, nasty cold right now. The poor guy really wanted to stay home today...and he does have PTO time saved up, so he could have, but he is being so awesome and being a trooper so that we can have the PTO time for after the baby gets here, or in case we need to take it to take Faith to Salt Lake for testing.
We are currently trying to plan our Valentine's Day. We are debating getting a hotel and going out of town, but I have NO CLUE who we will leave the kids with when we do it...I'm thinking we may need to plan it for after Valentine's Day so we don't intrude upon one of our sibling's festivities so we can get away. If we make it out- Expect a post! LOL Jeff and I never had a honeymoon, we thought it would be best to save the money, so we are looking forward to the idea of a weekend away with just the two of us.
Phillie is ADORABLE...as usual...no surprise there. The Divine Cupcake has perfect chubby, cherub cheeks that I can't help but want to kiss as much as possible. She is talking up a storm. Not sure if I already told this story here or not, but the other day, I was sitting on the couch, exhausted and tired. My eyes were closed...the little stinker pulled herself up on the couch, plopped herself into my lap and grabbed my cheeks. I looked up into her hazel/blue eyes and she said, "How you doin'?" I said, "I'm doing fine, my love, how are you?" She sighed and looked up like she was mimicking her tired mamma and said, "I good"...and then proceeded to give me tons of kisses and loves.
Yesterday, we were getting in the car to go home after going to the store to pick up a few things. I buckled her in and she smiled at me and grabbed my cheeks and said, "I yove you (I love you)" and gave me a big kiss. I smiled and said I love you back and kissed her back...but she kept holding onto my cheeks...and she said it again, "Yove you" and gave me a kiss...I said it back and squeezed her...but she still didn't let go...she did this 4 times...I guess she REALLY wanted to get the point across that she loved me...and I was SO tired...I definitely needed to hear it. I love how she always seems to say what I need to hear. She talks so randomly, and never when you ask her to say anything...but when she does talk, she definitely makes it worth hearing.
She was NOT happy at the doctor's office today. She wanted to go out in the waiting room and play with the other kids...sorry poppet, not an option without someone to watch you. She screamed for the first 10 minutes we were in the room. Bless our pediatrician's nurse. She was so patient and kind about it all. I finally calmed her down with a fruit roll up that I'd left in the diaper bag after church on Sunday. Needless to say, 1 flu shot later (she got her flu shot booster today while sissy was getting her vaccinations updated), she was out like a light in the car as we went to go get daddy for lunch....and now she won't go down for her nap...I hear her screaming "Yay" and "Wee!" from her bedroom as I'm typing this and wonder if I should go in to check on them and stop whatever it is they're doing...however, I also know that i put all the toys in the closet, so chances are, Faith has once again turned Phillie's bed into a trampoline with guard rails to hold onto and Phillie is enjoying being bounced up and down over and over again as Faith jumps, completely unaware that she is actually playing with her sister.
Faith had 2 shots and was a trooper as well. They EARNED those french fries we got with lunch...LOL
(Hi, my name is Brittany and I feed my kids cholesterol filled, fattening foods...and I really don't care what people think about it. ha ha. If it makes those of you that are completely disgusted feel any better, I will be sure to give them some fruit with dinner...it all evens out, right?)
Lunch was short today...too short. But it was nice to see Jeff and enjoy some time with my hunky man. He really is the sexiest man alive...I should notify People magazine that they were WAY off last year when they picked whoever they picked (I think it was Adam Lavigne from Maroon 5... I don't really pay too much attention, since I know they're always going to be wrong.) My favorite look of his is the smile he gets on his face when he is completely amused by something the kids are doing...that smile would sell dirt on the bottom of some designer shoes... seriously, model potential.
Anywhoo, darlings. Onward and upward. Life continues to move forward. No sense in stopping to wallow in the hard stuff because it just makes it take longer to get through.
Stay positive, stay prayerful, and know that I love you, wherever you are, whoever you are, for actually caring about my random life stories (and maybe you just love my meal plans and deal with the random stories in between...but thanks for that too.) Thank you for your prayers and warm thoughts. They have been felt.
Hugs and loves until next time, darlings.
Saturday, January 11, 2014
New Day...New Frustrations...
Faith has been making amazing progress since we started Autism therapy and class last week. The Autism specialist gave us therapy goals that were right on point and tools to meet those goals that have really resonated with her in ways that I never thought were possible.
Of course, these tools come with a level of frustration; however, that being said, in spite of the meltdowns we have while we're working with her, we feel like we know a little bit more about how to handle her meltdowns and have had some of her "tells" pointed out...you know, the physical cues she gives that tell us she is about to have a meltdown...
Its been tough,though. For every success we've had this week, and every baby step forward, it seems like there is a melt down to match it. Needless to say, yesterday, I was counting the minutes until daddy was home. Faith was NOT responsive to the tools, she was whining, kicking, biting, pushing her sister down... of course, there were small successes yesterday. Successes that made me hopeful to wake up and try it all again today...
However... a new day in my house is always filled with frustrations I never even imagined. (I'm sure most people's houses are this way, but considering the day I had yesterday, the new frustrations today have been MAGNIFIED)
It really started out as on okay day. Faith was (and is) being very clingy to daddy. In a way, daddy has become her "comfort item". This worries me, because it adds extra struggles when he is out of town and isn't home for a few days at a time. Mom literally is chopped liver when she is melting down. She wants the safety and security of her daddy. She craves it. We were dealing with the clingy nature that she was displaying, and I think Jeff was enjoying it. He misses the girls when he's gone and its been kind of a revelation, in a sense, for him to have Faith be so responsive to him and want to be around him.
However, the cousins came today. I agreed to watch my brother and sister in law's kids while they attended a memorial service for a family member. Faith went from calm to escape mode in literally seconds. She was doing everything she could to stay on the outside corners of the room, and if the opportunity presented itself, to escape to another room. She pretty much shut down. There was no response to anyone trying to interact with her, even daddy. She wanted to be somewhere quiet, somewhere alone...somewhere where her cousins weren't trying to convince her to share toys... definitely something we need to work on, but it will take time.
Finally, after some semi melt downs, I convinced her cousins to wait until she was done with toys if they wanted them and to leave her alone. Once that happened, Faith settled down for a few moments to watch a movie.
I thought we were over the big hurdle for the day...but Faith always surprises me.
Then came naptime.
I put Faith down, she rolled over and snuggled up under her blanket, and I imagined that she was just going to go to sleep (usually when she does that, she does)
Then...came the weird noises. Banging noises I wasn't familiar with. I knew someone was up, and I knew they were into something they shouldn't be into.
I went into the bedroom and was shocked and HORRIFIED by what I found.
Somehow, Faith had managed to crawl on top of their dressers and was rocking one of them back and forth like a swing...I quickly rushed in and pulled her off the top.
Now...before you get too worked up, these aren't heavy wooden dressers. These are the plastic Sterilite tupperware dressers, the kind where the drawers pull out and become bins for storage... a cheap fix for needing dressers for the girls and they are EXTREMELY light. Even if she'd managed to knock it over as she rocked it back and forth, it wouldn't have landed on her, but I think there would have been a good chance of a broken arm or leg from the 3-4 foot fall.
I have NO CLUE how she got up on top of them. They are far too tall and weak for her to have been able to pull herself up..the only thing I can think of is that she somehow managed to figure out how to turn it into a ladder of sorts...
Long story short- I'm spent. I'm done...and I told my husband this.
I know that I can't be done...or spent...I don't have that option...
but its definitely frustrating when you think you have the house "baby proofed" and safe, and your Autistic 2 year old finds a way to make things you thought were safe incredibly unsafe... Not only does our house need to be "baby proofed", it needs to be "Faith proofed" and that is the hardest part...she is smart, she works puzzles out quickly and easily, and she finds new ways to use items that I didn't think were possible...Its times like this that I WISH communication was possible with her so I could learn a little more how her mind works.
I guess, in the end, I just need to chalk it off to trial and error and be thankful to God that I caught her before she did manage to hurt herself horribly...but it makes me feel even more exhausted when I'm already spent from the day before...I feel like I can't even leave her alone for a minute...not even so she can have a nap...because she will inevitably find a way to get herself into danger...and it seems like she has no danger register at all. Most little kids I know would get up on top of the dresser, realize how high it is, and start crying...but not her...she decides to rock back and forth and turn it into a swing...
I know that someday I will be grateful for her no fear attitude, but today, right now, is not the time that I'm grateful for that...today I wish more than anything that I could impress upon her how dangerous of a situation she'd gotten herself into... but those words (like most ) just don't compute.
Onward and upward. Every day is a new day. All I can do is pray that tomorrow will be a little better, a little easier, with a few more baby steps forward.
I have faith it will be better. At least I have one more day with Jeff before he has to take off for work (he goes to Texas next week) and one more day to try to rest and gear up for everything that must be done.
More therapy for Faith, doctor's appointment for me to see how gummy bear is doing, and 3-5 days of holding down the fort.
I've done these things before. I will continue to do them... but today, as I'm feeling spent... I just want to curl up, cry, and hide from the world for a few hours.
Tomorrow will be better. Tomorrow is another day.
Let's count blessings for today, shall we? (It always helps... plus, I don't want to end on a Debbie Downer note. Its just too depressing, and I don't like to be depressed. I'd rather accentuate the positive and work through the negative as it comes.)
1. Before naptime, Phillie crawled into my lap, gave me a hug and asked me "How are you?" with the biggest, cheesiest grin you've ever seen. I replied, "I'm doing okay. How are you?" She sighed, smiled and said, "Good." and proceeded to give me the biggest, longest hug ever. I am so grateful for her. She always seems to say the funniest things, or the most thoughtful things right when I need to hear her. She is seriously the silliest, sweetest baby girl I know.
2. I was trying to get the girls to say thanks to Jeff for making us breakfast and Faith, out of the corner of the room parroted back the vowel sounds and cadence. She didn't look up or stop what she was doing, and didn't give any recollection that she really knew what she was saying or what it meant, but at least its a sign that the therapy I've been working on with her this week is helping immensely to at least teach her the value of responding when I say something.
3. Jeff didn't make me make lunch for all the kidlets we had in our house today. He sweetly went and picked up Little Caesar's hot and ready pizzas...bless him.
4. I got to watch Shrek the Musical on Netflix(it always puts me in a good mood.)
5. Diet Dr. Pepper...enough said.
6. I saved my daughter from a potentially dangerous situation and the only fall out was my heart being in my throat. Hooray for being observant and knowing to listen for sounds that aren't normally heard in our house.
7. I have gained a new appreciation for how excited I will be to be in the new house in the next few months. We NEED more space...it will be nice to have a "playhouse" area for the girls so that they aren't creating an obstacle course by the front door EVERY time they play. Hooray for new houses, for sale by owner situations, answers to prayers to find the right place, first time homebuyer initiatives, finding a loan that will cover all the closing costs, and sellers that were willing to accept the terms. With any luck, we will be closing before the day we set and moved in on March 1 (at least that is what I'm praying for.)
8. I got to "talk shop" with an old college friend of mine and we're putting together a recital for the spring/early summer that will be a benefit for Autism Speaks. I'm pretty excited about it, and I already have the closing number picked (because I'm schmultzy like that.)
Dangerous scenarios and melt downs aside...today has been a pretty decent day.
Now, when the kids wake up, we get to go purchase diapers, milk, and other household necessities (possibly a new food processor since we decided this morning that we really need one while Jeff was making breakfast.) Hooray for semi-stable finances, a job that provides for our needs, and my sweet husband who works so hard for us so that I can stay home and handle the rest...I don't know how we would work all of the necessary time into our schedule for therapy for Faith and doctor's appointments for me if I was trying to hold down a job on TOP of everything else. God is good. He always provides. We are blessed.
Hugs and Loves until next time, darlings.
Of course, these tools come with a level of frustration; however, that being said, in spite of the meltdowns we have while we're working with her, we feel like we know a little bit more about how to handle her meltdowns and have had some of her "tells" pointed out...you know, the physical cues she gives that tell us she is about to have a meltdown...
Its been tough,though. For every success we've had this week, and every baby step forward, it seems like there is a melt down to match it. Needless to say, yesterday, I was counting the minutes until daddy was home. Faith was NOT responsive to the tools, she was whining, kicking, biting, pushing her sister down... of course, there were small successes yesterday. Successes that made me hopeful to wake up and try it all again today...
However... a new day in my house is always filled with frustrations I never even imagined. (I'm sure most people's houses are this way, but considering the day I had yesterday, the new frustrations today have been MAGNIFIED)
It really started out as on okay day. Faith was (and is) being very clingy to daddy. In a way, daddy has become her "comfort item". This worries me, because it adds extra struggles when he is out of town and isn't home for a few days at a time. Mom literally is chopped liver when she is melting down. She wants the safety and security of her daddy. She craves it. We were dealing with the clingy nature that she was displaying, and I think Jeff was enjoying it. He misses the girls when he's gone and its been kind of a revelation, in a sense, for him to have Faith be so responsive to him and want to be around him.
However, the cousins came today. I agreed to watch my brother and sister in law's kids while they attended a memorial service for a family member. Faith went from calm to escape mode in literally seconds. She was doing everything she could to stay on the outside corners of the room, and if the opportunity presented itself, to escape to another room. She pretty much shut down. There was no response to anyone trying to interact with her, even daddy. She wanted to be somewhere quiet, somewhere alone...somewhere where her cousins weren't trying to convince her to share toys... definitely something we need to work on, but it will take time.
Finally, after some semi melt downs, I convinced her cousins to wait until she was done with toys if they wanted them and to leave her alone. Once that happened, Faith settled down for a few moments to watch a movie.
I thought we were over the big hurdle for the day...but Faith always surprises me.
Then came naptime.
I put Faith down, she rolled over and snuggled up under her blanket, and I imagined that she was just going to go to sleep (usually when she does that, she does)
Then...came the weird noises. Banging noises I wasn't familiar with. I knew someone was up, and I knew they were into something they shouldn't be into.
I went into the bedroom and was shocked and HORRIFIED by what I found.
Somehow, Faith had managed to crawl on top of their dressers and was rocking one of them back and forth like a swing...I quickly rushed in and pulled her off the top.
Now...before you get too worked up, these aren't heavy wooden dressers. These are the plastic Sterilite tupperware dressers, the kind where the drawers pull out and become bins for storage... a cheap fix for needing dressers for the girls and they are EXTREMELY light. Even if she'd managed to knock it over as she rocked it back and forth, it wouldn't have landed on her, but I think there would have been a good chance of a broken arm or leg from the 3-4 foot fall.
I have NO CLUE how she got up on top of them. They are far too tall and weak for her to have been able to pull herself up..the only thing I can think of is that she somehow managed to figure out how to turn it into a ladder of sorts...
Long story short- I'm spent. I'm done...and I told my husband this.
I know that I can't be done...or spent...I don't have that option...
but its definitely frustrating when you think you have the house "baby proofed" and safe, and your Autistic 2 year old finds a way to make things you thought were safe incredibly unsafe... Not only does our house need to be "baby proofed", it needs to be "Faith proofed" and that is the hardest part...she is smart, she works puzzles out quickly and easily, and she finds new ways to use items that I didn't think were possible...Its times like this that I WISH communication was possible with her so I could learn a little more how her mind works.
I guess, in the end, I just need to chalk it off to trial and error and be thankful to God that I caught her before she did manage to hurt herself horribly...but it makes me feel even more exhausted when I'm already spent from the day before...I feel like I can't even leave her alone for a minute...not even so she can have a nap...because she will inevitably find a way to get herself into danger...and it seems like she has no danger register at all. Most little kids I know would get up on top of the dresser, realize how high it is, and start crying...but not her...she decides to rock back and forth and turn it into a swing...
I know that someday I will be grateful for her no fear attitude, but today, right now, is not the time that I'm grateful for that...today I wish more than anything that I could impress upon her how dangerous of a situation she'd gotten herself into... but those words (like most ) just don't compute.
Onward and upward. Every day is a new day. All I can do is pray that tomorrow will be a little better, a little easier, with a few more baby steps forward.
I have faith it will be better. At least I have one more day with Jeff before he has to take off for work (he goes to Texas next week) and one more day to try to rest and gear up for everything that must be done.
More therapy for Faith, doctor's appointment for me to see how gummy bear is doing, and 3-5 days of holding down the fort.
I've done these things before. I will continue to do them... but today, as I'm feeling spent... I just want to curl up, cry, and hide from the world for a few hours.
Tomorrow will be better. Tomorrow is another day.
Let's count blessings for today, shall we? (It always helps... plus, I don't want to end on a Debbie Downer note. Its just too depressing, and I don't like to be depressed. I'd rather accentuate the positive and work through the negative as it comes.)
1. Before naptime, Phillie crawled into my lap, gave me a hug and asked me "How are you?" with the biggest, cheesiest grin you've ever seen. I replied, "I'm doing okay. How are you?" She sighed, smiled and said, "Good." and proceeded to give me the biggest, longest hug ever. I am so grateful for her. She always seems to say the funniest things, or the most thoughtful things right when I need to hear her. She is seriously the silliest, sweetest baby girl I know.
2. I was trying to get the girls to say thanks to Jeff for making us breakfast and Faith, out of the corner of the room parroted back the vowel sounds and cadence. She didn't look up or stop what she was doing, and didn't give any recollection that she really knew what she was saying or what it meant, but at least its a sign that the therapy I've been working on with her this week is helping immensely to at least teach her the value of responding when I say something.
3. Jeff didn't make me make lunch for all the kidlets we had in our house today. He sweetly went and picked up Little Caesar's hot and ready pizzas...bless him.
4. I got to watch Shrek the Musical on Netflix(it always puts me in a good mood.)
5. Diet Dr. Pepper...enough said.
6. I saved my daughter from a potentially dangerous situation and the only fall out was my heart being in my throat. Hooray for being observant and knowing to listen for sounds that aren't normally heard in our house.
7. I have gained a new appreciation for how excited I will be to be in the new house in the next few months. We NEED more space...it will be nice to have a "playhouse" area for the girls so that they aren't creating an obstacle course by the front door EVERY time they play. Hooray for new houses, for sale by owner situations, answers to prayers to find the right place, first time homebuyer initiatives, finding a loan that will cover all the closing costs, and sellers that were willing to accept the terms. With any luck, we will be closing before the day we set and moved in on March 1 (at least that is what I'm praying for.)
8. I got to "talk shop" with an old college friend of mine and we're putting together a recital for the spring/early summer that will be a benefit for Autism Speaks. I'm pretty excited about it, and I already have the closing number picked (because I'm schmultzy like that.)
Dangerous scenarios and melt downs aside...today has been a pretty decent day.
Now, when the kids wake up, we get to go purchase diapers, milk, and other household necessities (possibly a new food processor since we decided this morning that we really need one while Jeff was making breakfast.) Hooray for semi-stable finances, a job that provides for our needs, and my sweet husband who works so hard for us so that I can stay home and handle the rest...I don't know how we would work all of the necessary time into our schedule for therapy for Faith and doctor's appointments for me if I was trying to hold down a job on TOP of everything else. God is good. He always provides. We are blessed.
Hugs and Loves until next time, darlings.
Wednesday, January 8, 2014
A Different Kind of Grief
I have debated back and forth about posting this. I really don't want to start a pity party, or make it seem like I'm ungrateful...but I also know that , for my sanity, I need some sort of cathartic outlet...and since getting up on the stage to do something like sing Mimi (La Boheme) and "die" isn't and option right now for working out my feelings, writing is the next outlet...I just need to make sense of what I'm feeling so I can move forward and find some clarity. (Yes...we artsy fartsy types need to work out our feelings...I think everyone does...just not everyone likes to admit it, darlings.)
I just need to work out this feeling. I don't know if I would call it "grief"... I am struggling with a sort of loss, but the reality is, I am feeling the loss of something I've never really had.
I love my children desperately. They make my life so much better and so much more interesting than it ever was when I was auditioning, doing competitions, and travelling around doing what I love to do and following my passion...but with Faith, there come those moments, those reminders that my life with my child isn't the same as the life of another woman with an average 2 year old.
My daughter has severe developmental delays...most likely is Autistic (we will move forward with her official diagnosis once we get through Audiology)...and I am dealing with that reality.
I know this diagnosis doesn't change anything. Faith is lovely. Faith is sweet. Faith is full of life and energy. Faith is smart...
but then there are THOSE moments...the moments when we meet with one of her peers...or even when we meet with a peer who is younger and I see all the things that I'm missing out on... she doesn't ask me questions...she doesn't follow directions... she doesn't respond to her name... I'm lucky if I can get her to look at me once or twice during the day... in THOSE moments, where her delays become painfully obvious I have to catch my breath. I go home, find a quiet place, and I cry. I weep for all the things that I wish we could do...messy art projects, letting her help me with the laundry...little things that an average two year old will happily do just to be close to their mommy.
I hear my friends complain about their two year olds, the terrible twos, the talking back and I want to scream. I want to scream because I would give ANYTHING to hear Faith verbalize her discontent...I would give anything to hear her shout "No!" emphatically, cross her arms, and stomp out of the room...of course, I don't scream. I don't mention it. I relent with the friend complaining and move on...but the sting is still there.
I had a friend give me a story/poem about how living with a child with Autism is like getting a ticket to go on a free vacation. You thought you were going to Italy, but somehow the plane ended up in Denmark...the gist was learning to love and appreciate Denmark and allowing yourself to let go of the possibilities of Italy... I guess I'm still working on the letting go part...
I LOVE Faith with every fiber of my being. I hurt when she hurts. It kills me that she can't tell me what is bothering her, that I can't make things magically better. Every day, I walk on eggshells, praying that we get through without a meltdown...I say a quiet prayer at naptime that she won't scream as she is waking up...because no matter what I do, nothing makes it better. She is waking up to a world that overstimulates her, a world she doesn't understand..and that scares her...and I can't help her to not be afraid...and it kills me.
We went to the doctor's office yesterday for Jeff. He had an allergic reaction to something and, no matter what we did at home, it just wouldn't go away...Phillie happily sat quietly next to me in the waiting room, and Faith ran around like a mad person. There were eye rolls as we attempted to keep her behavior in check, and even more when she melted down when Jeff stopped her from running back into the exam rooms for the 15th time... In those moments I want to scream at everyone rolling their eyes... if they only knew...and I want to cry because the grief starts to overcome me as I realize the marked difference between Faith and her little sister. Phillie follows simple commands, she stops doing what she's doing when she's told "no", she looks at me, smiles at me, kisses me, talks to me...
I guess the biggest thing I need in moving forward is to know that I'm the mom Faith needs...and sometimes I just don't feel like I am. She can't tell me what she wants, needs, feels, thinks... all she can do is melt down and throw a tantrum because I don't magically read her mind.
She brings me a sippy, I try to get her to tell me if she wants milk or juice (two signs that she mostly knows and recognizes) and it starts... the kicking, pinching, biting, hitting because she doesn't understand why I'm trying to get her to specify...she brought me a sippy, I should just know!
However...in spite of the daily melt downs, there are moments. Moments of beauty, moments of wonder where I am so, so grateful that she is mine. Moments when she gets up and starts dancing to music that she likes with a bigger grin than I've ever seen...moments when, without any indication of her intention, I feel her next to me on the couch with her little head on my shoulder... moments when she says so much without being able to say a single word. Those moments I'm grateful for...those moments get me through the day.
Being a mom is hard work. Being a mom of kids with delays is even harder work... but no matter what your situation, its very rewarding.
One of my friends posted on Facebook about how guilty she feels at the end of the day when she realizes how much she has yelled at her kids. As I was delving out my "you're not alone advice" a phrase popped into my head...a phrase that has gotten me through a very rough morning, and I'd wager it will get me through a few more (you know, one of those moments where you need to look in the mirror and follow your own advice.) God didn't give us our children because we're perfect. He gave us our children so we could be perfected.
In the end, I will continue to have my moments of grief...its just how it is. I need to slowly let go of all the preconceived notions I had about what life would be like with a 29 month old...I know I need to stop looking at kids her age and slightly younger than her and comparing. That mother's journey to perfection is different than mine... and while my journey isn't the journey I'd pictured, its the journey I need.
I have faith that eventually I will understand why I ended up in Denmark instead of Italy, and I will fall at the knees of my God in expressions of gratitude for the journey. On the hard days, I will pine a little bit (I think, honestly, its in human nature to look at the greener grass on the other side of the fence and wish every once in a while that things are different)
My journey is MINE. Faith is my daughter for eternity. She is strong, valiant, and brave...she was so strong, valiant and brave that Heavenly Father gave her a special mission...a mission to save me from myself. A mission to make me better, to perfect me in ways that I never knew were possible. Aren't I so lucky to have a Heavenly Father who knows what I need more than I do? Aren't I so blessed to be the advocate for this sweet spirit and help her to navigate and understand this mortal journey?
I know I am. No matter how many times I get caught up in this "different kind of grief", at the end of it, standing in front of me is this beautiful, sweet little spirit, with toehead blonde hair and blue eyes. My God, she is gorgeous! She loves to dance. She loves to giggle. She loves to spin and spin and spin. She is perfect because she is the way God made her to be. She may not be able to tell me she loves me, but she shows me in more ways that I can describe. She may not always be an angel, but she tries...she tries so desperately to be good...she just can't help herself at times... and that is what we're working on. No one ever made progress that never tried.
Italy would have been nice, but in the end, Denmark is going to be the greatest journey I've ever known.
Hugs and loves until next time, darlings.
I just need to work out this feeling. I don't know if I would call it "grief"... I am struggling with a sort of loss, but the reality is, I am feeling the loss of something I've never really had.
I love my children desperately. They make my life so much better and so much more interesting than it ever was when I was auditioning, doing competitions, and travelling around doing what I love to do and following my passion...but with Faith, there come those moments, those reminders that my life with my child isn't the same as the life of another woman with an average 2 year old.
My daughter has severe developmental delays...most likely is Autistic (we will move forward with her official diagnosis once we get through Audiology)...and I am dealing with that reality.
I know this diagnosis doesn't change anything. Faith is lovely. Faith is sweet. Faith is full of life and energy. Faith is smart...
but then there are THOSE moments...the moments when we meet with one of her peers...or even when we meet with a peer who is younger and I see all the things that I'm missing out on... she doesn't ask me questions...she doesn't follow directions... she doesn't respond to her name... I'm lucky if I can get her to look at me once or twice during the day... in THOSE moments, where her delays become painfully obvious I have to catch my breath. I go home, find a quiet place, and I cry. I weep for all the things that I wish we could do...messy art projects, letting her help me with the laundry...little things that an average two year old will happily do just to be close to their mommy.
I hear my friends complain about their two year olds, the terrible twos, the talking back and I want to scream. I want to scream because I would give ANYTHING to hear Faith verbalize her discontent...I would give anything to hear her shout "No!" emphatically, cross her arms, and stomp out of the room...of course, I don't scream. I don't mention it. I relent with the friend complaining and move on...but the sting is still there.
I had a friend give me a story/poem about how living with a child with Autism is like getting a ticket to go on a free vacation. You thought you were going to Italy, but somehow the plane ended up in Denmark...the gist was learning to love and appreciate Denmark and allowing yourself to let go of the possibilities of Italy... I guess I'm still working on the letting go part...
I LOVE Faith with every fiber of my being. I hurt when she hurts. It kills me that she can't tell me what is bothering her, that I can't make things magically better. Every day, I walk on eggshells, praying that we get through without a meltdown...I say a quiet prayer at naptime that she won't scream as she is waking up...because no matter what I do, nothing makes it better. She is waking up to a world that overstimulates her, a world she doesn't understand..and that scares her...and I can't help her to not be afraid...and it kills me.
We went to the doctor's office yesterday for Jeff. He had an allergic reaction to something and, no matter what we did at home, it just wouldn't go away...Phillie happily sat quietly next to me in the waiting room, and Faith ran around like a mad person. There were eye rolls as we attempted to keep her behavior in check, and even more when she melted down when Jeff stopped her from running back into the exam rooms for the 15th time... In those moments I want to scream at everyone rolling their eyes... if they only knew...and I want to cry because the grief starts to overcome me as I realize the marked difference between Faith and her little sister. Phillie follows simple commands, she stops doing what she's doing when she's told "no", she looks at me, smiles at me, kisses me, talks to me...
I guess the biggest thing I need in moving forward is to know that I'm the mom Faith needs...and sometimes I just don't feel like I am. She can't tell me what she wants, needs, feels, thinks... all she can do is melt down and throw a tantrum because I don't magically read her mind.
She brings me a sippy, I try to get her to tell me if she wants milk or juice (two signs that she mostly knows and recognizes) and it starts... the kicking, pinching, biting, hitting because she doesn't understand why I'm trying to get her to specify...she brought me a sippy, I should just know!
However...in spite of the daily melt downs, there are moments. Moments of beauty, moments of wonder where I am so, so grateful that she is mine. Moments when she gets up and starts dancing to music that she likes with a bigger grin than I've ever seen...moments when, without any indication of her intention, I feel her next to me on the couch with her little head on my shoulder... moments when she says so much without being able to say a single word. Those moments I'm grateful for...those moments get me through the day.
Being a mom is hard work. Being a mom of kids with delays is even harder work... but no matter what your situation, its very rewarding.
One of my friends posted on Facebook about how guilty she feels at the end of the day when she realizes how much she has yelled at her kids. As I was delving out my "you're not alone advice" a phrase popped into my head...a phrase that has gotten me through a very rough morning, and I'd wager it will get me through a few more (you know, one of those moments where you need to look in the mirror and follow your own advice.) God didn't give us our children because we're perfect. He gave us our children so we could be perfected.
In the end, I will continue to have my moments of grief...its just how it is. I need to slowly let go of all the preconceived notions I had about what life would be like with a 29 month old...I know I need to stop looking at kids her age and slightly younger than her and comparing. That mother's journey to perfection is different than mine... and while my journey isn't the journey I'd pictured, its the journey I need.
I have faith that eventually I will understand why I ended up in Denmark instead of Italy, and I will fall at the knees of my God in expressions of gratitude for the journey. On the hard days, I will pine a little bit (I think, honestly, its in human nature to look at the greener grass on the other side of the fence and wish every once in a while that things are different)
My journey is MINE. Faith is my daughter for eternity. She is strong, valiant, and brave...she was so strong, valiant and brave that Heavenly Father gave her a special mission...a mission to save me from myself. A mission to make me better, to perfect me in ways that I never knew were possible. Aren't I so lucky to have a Heavenly Father who knows what I need more than I do? Aren't I so blessed to be the advocate for this sweet spirit and help her to navigate and understand this mortal journey?
I know I am. No matter how many times I get caught up in this "different kind of grief", at the end of it, standing in front of me is this beautiful, sweet little spirit, with toehead blonde hair and blue eyes. My God, she is gorgeous! She loves to dance. She loves to giggle. She loves to spin and spin and spin. She is perfect because she is the way God made her to be. She may not be able to tell me she loves me, but she shows me in more ways that I can describe. She may not always be an angel, but she tries...she tries so desperately to be good...she just can't help herself at times... and that is what we're working on. No one ever made progress that never tried.
Italy would have been nice, but in the end, Denmark is going to be the greatest journey I've ever known.
Hugs and loves until next time, darlings.
Friday, January 3, 2014
Meal Planning...back in the saddle!
Hello, darlings!
I am sorry we'v had such a long hiatus from meal plans but between morning sickness and learning about my Diabetes, it has been awfully difficult to even want to plan meals...and let's face it, when you throw in some major dietary restrictions, coupled with picky toddlers, it can make for an interesting (FRUSTRATING) time.
Here is the meal plan for the next two weeks. Feel free to steal as much of it as you need/want to. Not all of the recipes are 100% diabetic friendly, but there are easy substitutions I can make so that I can give my family the type of food they love, while making sure that my diet is maintained and healthy for me and the gummy bear in my belly.
Bon Appetit!
Cafe Rio Sweet Pork Burrito/Salad (salad for me, burrito for them.) * diabetic substitution- use brown rice! Has more fiber and fewer carbohydrates to spike your sugars. :) *
Cheeseburger Casserole *diabetic substitution- Whole wheat or gluten free pasta to cut down on carbohydrates.*
Chicken Gyros *diabetic substitution- you can try to find whole wheat pitas or flat bread if you'd like, but because they're unleavened, pita bread is generally lower in carbs*
Fettucini with Tomato Cream Sauce *again, can sub gluten free or whole wheat pasta*
Hobo Tin Foil Dinner
Homemade Chicken Nuggets
Honey Lime Chicken Enchiladas *sub whole wheat or low carb tortillas, I already use half the honey as well that the recipe calls for because for me and my family, they turn out overly sweet with the amount called for in the recipe*
Lemon Baked Chicken
Lion House Sweet and Sour Chicken
Weight Watcher's Chicken and Cheese Pasta Bake (A FAVORITE of my kids!)
P.F. Changs Crispy Honey Chicken Copy Cat (no link- sorry didn't copy it) If you want to find it, go to Food.com and search for 426044 or the recipe title.
Pizza Dip
Sticky Fingers Copy Cat *I will be breading my own chicken and baking it kind of like the chicken nugget recipe above to put the sauce on.*
I am sorry we'v had such a long hiatus from meal plans but between morning sickness and learning about my Diabetes, it has been awfully difficult to even want to plan meals...and let's face it, when you throw in some major dietary restrictions, coupled with picky toddlers, it can make for an interesting (FRUSTRATING) time.
Here is the meal plan for the next two weeks. Feel free to steal as much of it as you need/want to. Not all of the recipes are 100% diabetic friendly, but there are easy substitutions I can make so that I can give my family the type of food they love, while making sure that my diet is maintained and healthy for me and the gummy bear in my belly.
Bon Appetit!
Cafe Rio Sweet Pork Burrito/Salad (salad for me, burrito for them.) * diabetic substitution- use brown rice! Has more fiber and fewer carbohydrates to spike your sugars. :) *
Cheeseburger Casserole *diabetic substitution- Whole wheat or gluten free pasta to cut down on carbohydrates.*
Chicken Gyros *diabetic substitution- you can try to find whole wheat pitas or flat bread if you'd like, but because they're unleavened, pita bread is generally lower in carbs*
Fettucini with Tomato Cream Sauce *again, can sub gluten free or whole wheat pasta*
Hobo Tin Foil Dinner
Homemade Chicken Nuggets
Honey Lime Chicken Enchiladas *sub whole wheat or low carb tortillas, I already use half the honey as well that the recipe calls for because for me and my family, they turn out overly sweet with the amount called for in the recipe*
Lemon Baked Chicken
Lion House Sweet and Sour Chicken
Weight Watcher's Chicken and Cheese Pasta Bake (A FAVORITE of my kids!)
P.F. Changs Crispy Honey Chicken Copy Cat (no link- sorry didn't copy it) If you want to find it, go to Food.com and search for 426044 or the recipe title.
Pizza Dip
Sticky Fingers Copy Cat *I will be breading my own chicken and baking it kind of like the chicken nugget recipe above to put the sauce on.*
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