A Few Things NOT to Say to Someone Parenting a Child with Developmental Delays

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.

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.

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.

TGIF

Today has been one of THOSE days. My girls decided to wake up shortly after daddy left for work. I am currently fighting the cold from HADES, and I really, REALLY wanted to sleep in...

Normally, I would have just left them to play in their room, but today they decided that it would be way more fun to bang on the door screaming and babbling loudly until I opened it for them. I found a familiar scene...the freshly folded clothes I'd JUST gotten back into their drawers strewn about the floor and the two of them had taken up a post sitting on top of one of the drawer bins turning on and off the lights...

TGIF!!!! That is all I can say...and with a beginning like that, you can guess that so far its been QUITE the day.

We had a meeting with an Occupational Therapist this morning to have Faith evaluated for sensory issues. She ended up watching her for about 30 minutes and how she interacted and asked me a few questions....the ones that I feel like I've answered a million times...but I also know that unless they hear it directly, it didn't necessarily get heard at all.  I do feel like she gave me some successful pointers to help Faith in the interum until she is able to complete her official evaluation.

Faith does have issues functioning in large group scenarios. She clings tightly to my legs and screams and cries until I take her out of the "scary" situation, she tries to hide somewhere quiet, or she tries to escape...and the problem with that last one is that when she escapes, because she doesn't answer to her name when she is called, it is quite difficult to locate her. She escaped nursery at church one Sunday and  I had 4 sweet sisters and a few bretheren trying to help me find her...After about 30 minutes of heart attack, she was found crouching under the water fountains... I was seriously so afraid she'd gotten out of the building, everyone was calm and reassured me that they didn't believe ANYONE in their right mind would open the door for a 2 year old to run away unattended...thank heavens for calm people because I was anything but! ...Fast forward though to the OT's suggestion. 

I had mentioned that when things seem to get loud in the house, Faith has a tendency to take her favorite toy and hide under the table until the sound dies down. She also did this at my sister's house over Thanksgiving, or, if the front door wasn't closed all the way because of kids going in and out of the house, she would try to run away out the front door. The OT suggested purchasing an indoor play tent to be used as Faith's "quiet space". She said that she would wager that if Faith had a place to escape to when she was feeling overwhelmed, she would be able to cope better in large group scenarios and that she would be less inclined to try to escape out an open door. She said we could set it up in a high traffic area, and watch to see if she has gone in or out of it. So...we're in the market for a kids' tent...2 weeks from Christmas...all the shopping is done, and we now have one more thing to buy! Oh well...I think it will be well worth the money it costs to bring us some peace of mind. 

Next week, we meet with our team of evaluators to discuss the services Faith will be receiving here in Utah. The Speech Therapist and Autism Specialist weren't around the bush and said quite frankly after their visits that I would likely be seeing much more of them. Faith does have some sensory issues, but I wonder if its enough to warrant Occupational Therapy, time and our meeting next Friday will give me a more clear answer. We also have a nurse coming before that meeting to assess Faith's health and to do a vision and hearing screening...so next week will be all craziness (but then again, its the week before Christmas...it wouldn't be the week before Christmas without a little bit of crazy.)  

The good news is that we will FOR SURE have insurance starting January 1...which means I can call the pediatrician and make an appointment to not only get Faith's vaccinations updated (they couldn't update them at her last well child exam because they couldn't reach the doctor's office to get an updated list of vaccinations she'd already had.) and I can ask him for a referral to see a pediatric development specialist or developmental psychologist that is here in town (I know there is one...I've been referred to them before, but we'd JUST lost our insurance at the time, so I couldn't follow through with the appointment.) There is a clinic here in town that is ALL out of pocket expenses, but considering what I've heard from friends about the clinic, it will be much more than my family can afford. Waiting until we have insurance to cover the visit with us making a co-pay is going to be the best scenario option for us.

The initial visit for this out of pocket clinic that apparently has sliding scale fees is $200...and they don't even see your child the first visit...I can't even imagine how much the rest of the testing costs...one doctor runs it and the rest of the staff are people working towards a DMD...don't get me wrong, I know people studying medicine have to learn somewhere, but if I'm going to spend that kind of money out of pocket, I'd rather spend it at a clinic with an actual doctor on the case and have a chance of my insurance covering the bulk of it...Hopefully, we can get all of this figure out soon. I know I have several family members that are frustrated with me for waiting, but you can only do so much with what you have...and right now, though I wish we did have it, we DON'T have that kind of money to spend out of pocket all at once... 

In other life news, Jeff goes out of town next weekend, and may have to work until Christmas Eve...providing his plane back doesn't get delayed, we should have him back Christmas Eve night, but if his plane gets delayed...Well, lets just say I'm REALLY worried about it... Jeff was kind enough to remind me that he'd be getting paid double time for returning home on Christmas Eve...which will help cover a lot of bills we have coming our way, but it still is nerve wracking to not be sure if he will be home for Christmas or not...however, considering that his last employer didn't give two pennies about Christmas or ANY holidays for that matter, I should just be counting my blessings and feel fortunate that he has an employer that cares and is trying to make sure he can be home.

Also, other earth shattering events (well, to me anyway)...I gave myself my first insulin shot last night. There were tears, there was a near panic attack at the thought of sticking myself with a needle...but I got through it...I can do this! These injections mean a healthier me and a healthier baby, and I can't balk at either of those two options.

Also...when I was putting her down for a nap this morning at 10 AM, Phillie actually thanked me...I laid her on the bed, she looked up at me and said, "Tankooo", and rolled over to go to sleep...I guess that's what happens when you wake up at the butt crack of dawn and realize that you are so sleepy that you can't see straight when you're one year old...you thank your mom for naptime. (I was very grateful for her little smile as she rolled over. She was VERY happy to be safe in her bed and able to take a nap.) 

All in all, life is life...

I am learning how to navigate the world of diabetic eating. As soon as I feel like I've got more of a handle on it, I promise that there will be meal plans coming again (because I know that is why most of you bother to read my word vomit. LOL) 

As always, hugs and loves until next time, darlings.

Moving Forward

Its 1:30...

I am in desperate need of a shower, but I have two little monsters in the room next to the bathroom that are fighting sleep... I could be packing...but I just want a break after a morning of scrubbing the kitchen and packing the last of our dishes.  I still need to resweep and mop, but I figure that can wait until I've scrubbed myself down.

Its been a VERY busy last few weeks.

Jeff got a call about a job in Logan, UT...a job he apparently applied for over a YEAR ago, and they were JUST getting around to hiring for the position...It came at a time of kismet. Jeff had been unhappy for a while at Schlumberger, but hadn't been mentioning much because he didn't want to worry me...but it all came out as we discussed whether or not he should take a final interview in Logan.

After listening to his heart and concerns, we added going to a job interview in Logan to our weekend plans.

After a quick jaunt to Logan, an interview and a verbal job offer, we stopped in Logan Canyon to take some family pictures and headed back to Rock Springs with a lot to think about.

On Monday, Jeff received and accepted the official offer and moving became a reality.

I'm seriously bummed about leaving Rock Springs. I know I haven't blogged much about life here, but I will say that the people here are the friendliest people you'll meet (similar to Missoula, MT where I did my Master's degree).  The town is big enough that you can get everything you need, but small enough that people still reach out and try to be kind to everyone they know. Its the type of town where you can have a complete conversation to with strangers in line behind you at the grocery store. A bigger town with a small town feel...and I have loved every minute of it. I've been content here...

However, after some of the experiences and conversations Jeff has had with management since we made the decision, I am feeling very much at peace about this decision to head back to Logan.

I was surprised when we were back in Logan, how easy it was to slip back into routine and feel at home. I know that I will be okay starting over again. I know it will be work, don't get me wrong, but if my nomadic childhood (From 4th grade on I pretty much went to 2 to 3 schools for every grade with the exception of 9-11 grade when we were in Blackfoot) has taught me anything, its how to pack, be organized and start over with a smile and new hope that things will be better.

The Lord has surely drawn us back to Logan. The timing of the call, the age of the resume that they were using, the fact that Jeff's brother just happened to have a 2 bedroom rental in our price range open, and that the company is going to pay our moving expenses, all point to this fact.

The move here to Rock Springs did some very important things for us: 1) It allowed us to get out of the financial hole we'd fallen into when Jeff was unemployed. 2)It allowed us to save some money and pay off debts that had mounted after an ER visit for me while we were uninsured and 3) Most importantly, we were able to get access to the services we needed to find a direction to travel to help Faith.

As far as what is going to happen with Faith, I really don't know.

She failed one hearing test, and then 2 weeks later she passed it.

Our speech therapist (who has been AMAZING) feels really bad that she doesn't have a better idea of what is going on at this point. Some days she says Faith looks like a classic case of Asperger's or another low grade Autism Spectrum Disorder and other days it seems like she is completely deaf. She thought  that by now she would have been able to have given us a referral and we would have found the answers.

At this point, this is what we know: We will likely follow up with an audiologist to check and see if she has a malfunctioning cochlear nerve (ie some days it allows her to hear and some days it shuts off like she is deaf) This is a real thing, in fact, our speech therapist has another patient that is dealing with it and it was easily fixed with hearing aids....having said that, she also said that Faith's speech delay is FAR MORE severe than the speech delay that this other patient was dealing with. The other possibility is that there is fluid build up that comes and goes behind her ears causing there to be days when the ear drum cannot vibrate and days where it can, this problem would be fixed with surgical placement of tubes.  We will have to put off a visit with an audiologist until we are on new insurance in January, but our speech therapist said that shouldn't be a big deal.

We also still need to see a developmental psychologist, but were assured that the infant toddler program in Utah should be able to refer us to one free of charge or at a discounted cost for services through their program.  We just need to be sure if we can rule out any Autism Spectrum Disorder, and considering that some days she seems to show all the classic signs and others she doesn't, this assessment could be tricky.

We have had some encouraging developments in the last few days. Faith has most definitely learned the sign for milk. She will bring me her sippy and I will ask if she wants juice or water or milk and make all the signs as I say them and she without skipping a beat has been able to sign milk. She does sign water, but generally she doesn't want water and after I bring her water, she hands the sippy right back because she is unhappy with the contents. I'm hoping she will eventually catch on with the sign for water like she has for the sign for milk.

It isn't much progress, but its progress. I definitely feel like I'm beating my head against a brick wall some days, but when we do make baby steps it makes it all worth it--even if its a fleeting moment.

For now, we will transfer her paperwork to Utah's program and try to continue with services there. Our speech therapist said she would give me some exercises to work on with her in the meantime.

Phillie has been talking up a storm.

The other day we were trying to get her to give us kisses and she would shake her head no and then bury her face in a pillow or blanket. Finally, I said, "Fine, if you won't give me kisses, I'm going to steal them." She emphatically shook her head and said, "You can't get 'em" before hiding her face again... Jeff and I laughed about it for the next 20 or so minutes.  She also asks "Where we going?" when we leave the house, says, "Let's go", "Love you."...and plenty more. She doesn't talk all the time, but the random outbursts of perfectly understandable phrases are always a source of a little chuckle. This kid is definitely a comedienne!

Packing with them around has been interesting. We've had several flips and konked noggins after the girls have decided its a good idea to crawl up on boxes to reach things they've never been able to reach before. I particularly have to watch them around the piano because they situate the boxes like stairs and try to crawl on top of it. Phillie has several "battle wounds" from her futile attempts to be "king of the piano" (kind of like that grade school game "king of the hill" only the winner is the last one sitting on the piano?)

All in all, I may not know where we're ultimately going to end up, but there is comfort in knowing we are headed that way together. I am so grateful for my husband who works so hard so that I can be home with my girls.  This new job will definitely stink because he will be required to travel weekly, but at least he will be home every weekend and he has a boss that fights for (and usually succeeds in winning) holidays off so he can be with us.  We also will be closer to family (his family is in Logan and the surrounding area), and that means a lot too. When he's gone, I will have their support and that means a lot.

Well darlings, onward and upward. I think I may actually be able to take a shower now...but while I'm scrubbing away how about you take a gander at the decent family picture shots we managed to get last weekend...and you're welcome...

I LOVE Phillie's face in this one...its probably the best one we got.

I was testing lighting and had Phillie on my hip...I figured, WHY NOT? LOL

I wish Faith had been looking at the camera in this one because I actually really like the composition of it.

Hugs and loves until next time, darlings...

"Me" Time...

Life is hard.

I know what you're all thinking..."Thanks for that observation, Captain Obvious."

I've been really struggling lately to find balance.

Faith's therapy has been intensive and I feel guilty if I'm not devoting time to her when she is awake, working to help her overcome her difficulties with communication...then I feel guilty because Phillie is awake and here too and needs my attention just as much as Faith does...then Jeff gets home and needs attention...my voice students come over at sporadic points throughout the day diverting my attention from where I want it to be, then I need to get things ready for the Young Women (did I mention I was called to be the YW President last month at the end of the month?), and have my outside commitments like community choir...In short, I feel like Bilbo Baggins at the beginning of the Lord of the Rings, like too little butter scraped over too much bread...

Yesterday, we finally got some news that we'd been waiting for...Faith failed her hearing screening.

We're not sure how much she IS hearing, as the OAE only tests whether or not the sensations sent up the nerve in the ear come back out...Faith failed on both ears. The next step is either to continue with the Infant Toddler Program's path and have one more screening done at the local elementary school (can't remember what they called it, but it isn't 100% accurate as it asks a very small, very wiggly toddler to sit on my lap facing forward while sounds play behind her, to her side, etc. and they watch to see if she responds to the sounds that are playing around her...) and THEN if she fails that being referred to an audiologist (likely at Primary Children's in SLC) to see how much hearing loss we're talking about OR I can just talk to her pediatrician at her well child exam on Tuesday next week to see if she will use the failed OAE screening as proof enough that she can just refer us directly on to an audiologist for testing... We will see what the pediatrician says on Tuesday, but our speech therapist said that given Faith's symptoms (not speaking, preferring to babble mostly vowel sounds, not responding to her name, spinning at random times (if its hearing loss, she is likely doing this to stimulate her otic nerve), not responding to sound stimuli around her (i.e. people snapping or clapping next to her head to get her to turn around), and her newfound penchant for using her soft palate to babble instead of her lips (again, likely to stimulate the otic nerve because that is probably how she can hear the sounds that she makes the best)), she would wager that the failed OAE is correct and we're dealing with hearing loss and that she wouldn't blame me in the least for wanting to skip the second test with the audiologist at the elementary school and move right to the more drastic testing to measure how much she DOES hear in order to get her the help she needs...speech therapist is wagering that since oto-toxic antibiotics are involved, we may be looking at hearing aids, but said there are any number of reasons why the hearing loss has happened.

Well...with this news, and the knowledge that I am likely going to be spending some more time in SLC and travelling there, I knew something had to give.  I'd been debating for a little while, as I've been struggling with balancing everything since we started therapies, quitting the community choir. I'd held off because it was the ONE thing I was doing for myself...but at the end of the day, SOMETHING has to give...and unfortunately, as much as I love it, its the easiest thing to cut out at this point...I've debated dropping voice students, but I want to wait to see what happens with the pediatrician, audiologist, and Faith's diagnoses before I do something that drastic, but that may end up happening too...

My family will ALWAYS come first before anything I do for myself.  I've decided that if I want "me" time, I will just ask Jeff if I can go get a massage or something when I'm feeling tense, and I will take time when the girls are napping to practice my music more and maybe even start composing  and arranging music again (haven't composed/arranged music in a while and that could be a fun way to relieve stress.)  Faith, Phillie, Jeff and time with them are more valuable than 2 hours at choir during the week.

I will say that, even though it killed me to write the director, I felt 100,000 times lighter after it was done. I knew I made the right decision.

Right now, I need to focus on being a wife, mom, therapist, chauffer, housekeeper, and historian...

The director was lovely about accepting my resignation from the choir and told me I was welcome back whenever I felt like things had slowed down a bit.

I am content. I know that some of you may be thinking that this isn't really a "healthy" way to look at things...that I should have dropped something else before dropping my "me" time, but sometimes the easiest thing to do, is the right thing to do...in dropping choir, I've freed up 2 hours of time...time to be able to be there to put my babies to bed at night and enjoy their snuggles, time to cuddle up with my husband and talk about my stresses and what I've done during the day and listen to his stresses, and time to SLEEP!

In the end, I am a wife and a mother. I chose this path.  Its not a sacrifice to quit the choir... it would be more of a sacrifice to look back and regret that I wasn't able to be fully present because I was preoccupied elsewhere and I MISSED something vital and important. That is something I could never forgive myself for...

photo credit ME! Yep! I took and edited this, I'm pretty proud of myself. I'm doing a bomb diggity job as family historian, right?

Besides, who wouldn't want to be hopelessly devoted to THIS awesomeness?  Every smile, every giggle, every hug, every tantrum, or tiff over a toy is precious...and I will miss it someday...you can't get a minute back once its gone or wasted...so I choose not to waste them...I choose to be present...this IS my "me" time.

Hugs and Loves until next time, darlings.
 (Oh...you want more cuteness? Here you go...and you're welcome.)

One Step at a Time

Oh...this face...

I can't begin to tell you how much I love this face...and how frustrated I can get with this face...

Faith's first meeting with her new speech therapist went well. I didn't really get any ideas or information from her, as she was redoing the evaluation that Idaho had flubbed up...but I did get something I haven't had in a while- reassurance.

I had been told in Idaho that we couldn't start any therapies until we had a diagnosis, and our new speech therapist Ms. Carrie said that is absolutely NOT true.

She said that, after hearing our concerns, watching Faith, and completing her evaluation that she can definitely see a diagnosis that goes in one of two directions- no surprise- the directions were either hearing loss or Autism Spectrum Disorder.

She said that Faith exhibits mannerisms that are common in kids with ASD (sitting with her back facing the people she is socializing with, not wanting to play with other kids, not wanting physical contact unless she instigates it, etc.) however, she has seen in the past kids using these behaviors as an adaptation for help to feel some control in their world when they have hearing loss...so we're still where we were a few weeks ago...

But- back to the reassurance- the hope.

She said that the beginning therapies that she would use for a child that has ASD and hearing loss are the same. She has things that she can do with Faith to help her RIGHT NOW as opposed to waiting until we can find a diagnosis to get more targeted therapies.

She is coming Wednesday and I can't wait.

I don't know if I'm just getting impatient because I FINALLY feel like we have the help we need or like we're going to get somewhere or if Faith is getting more impatient and frustrated, but it seems like in the past week her tantrums and anger have been bumped up a notch.

Today I got the joy of dealing with a full on tantrum for 20 minutes because she wanted to put on a dress up dress... I had NO CLUE why she was freaking out all of a sudden. One minute she was fine the next she was running to me in tears, pinching me, flailing her arms, arching her back and just being all around nasty...Finally, I sat her down, she clung to my leg like a boa constrictor to its prey and pinched, digging her nails in as she screamed... when she realized I wasn't going to pick her back up she ran over and grabbed the dress and threw it at me...I picked it up and she pulled herself into my lap...still in tears she raised her legs waiting for me to pull it on...

and then...the tantrum was over...the tears stopped, she smiled, babbled and walked off to continue playing and I was left stunned thinking, "WHAT.WAS. THAT!?"

We've had similar tantrums over the last week, but this is the most recent and freshest in my mind...the worst one was last week when she brought me a sippy and I jokingly acted like I was drinking out of it instead of running to the kitchen directly to get her a drink...she melted into a pool of tears that didn't stop for nearly half an hour...she wanted a drink not for me to play with her...how dare I patronize her! Yikes!

For the most part, I try to ignore the tantrums or, when they're bad, I take her back to sit on her bed until she is done...but I'm not sure where the line is- the line that separates the point of being understanding and helping her to understand that she doesn't need to act out and the line of not spoiling her- and I'm not sure where that lies with her. With other little ones I've cared for, the line has been simple and easy to find... you know when they're being melodramatic and when you should scold them for their tantrum, ignore the tantrum, or be understanding to get to the bottom of the tantrum...but with Faith, I have NO IDEA how much gets through and how much she understands so its hard to know how to handle her thrashing, arched back, flailing arms, pinching, etc...

So...I let her have her tantrum, try to snuggle her and then excuse myself to go into another room to breathe or cry...or both...

I have noticed that she WILL respond to physical cues (i.e. If I tell her to "Come here" she won't come, but if I say "come here" while gesturing to her with my hands, she comes.) but I really don't know how to use physical cues to stop a tantrum...

I finally had enough today after our dress up dress tantrum... and decided that I can't wait for someone to tell me what to do, I need communication NOW, and spent the rest of the afternoon while the girls napped, while I should have been cleaning to get my house ready for voice lessons tomorrow, researching American Sign Language teaching aids and looking up the signs for basic words... I have a vague idea of how to teach them, but I need to wait until we've had another paycheck before I can fully implement the plan that is cooking in my brain...

In the meantime, I'm going to start using hand over hand reinforcement to try to show her the signs for basic words that we NEED her to be able to know and I'm going to try to push the envelope a bit when it comes to waiting for her /forcing her to use the signs before she gets what she wants.

When it comes right down to it I know her physical cues when she wants something, but not everyone does...and I would hate to think of what would happen if I left her with someone who didn't know her cues...she needs a more universal cue system and ASL would be a helpful way to accomplish that...Yes, not every sitter is going to know ASL, but with enough advance notice I can let them know what her basic signs are and she can get what she needs without a meltdown... and, most importantly to me, her daddy will be able to understand her too... I think he gets really frustrated with her, followed by being frustrated with me because I tell him what she's asking for but I don't realize I need to tell him until she is already starting to melt down.

In the end, I'm feeling frustrated and overwhelmed.

Frustrated because I have ideas but not the means to implement them right away and overwhelmed because I have SO MUCH WORK to do and so much to learn so I can be a better mom for Faith, the mom she needs.

Ms. Carrie is coming Wednesday to work with Faith and give us the complete results of her evaluation, in 2 weeks she will try to do the hearing test in our home and if she is unsuccessful, we have to go the route of taking her to an audiologist and having her put under general anesthesia...so I'm REALLY praying she tolerates the test in our home.

In the end, I have to remind myself that slow and steady wins the race. Yes, I have a lot to learn and a lot of work to do, but I don't have to do it all at once... and the biggest blessing is knowing that I am going to have the support to do it here.

 I just continue to pray that God will continue to lead us to the right doctors and therapists to help Faith be a clearer communicator...whether that means we learn ASL as a family or she slowly starts to find her voice, I will be happy as long as she can communicate her needs and not be so frustrated by other's inability to see what she is asking for...

I know we're on the path...we're travelling that path a little more slowly than I would like but I feel at peace and know that we're there... sometimes you just have to look for the glimmer of light in the darkness and take a step at a time, but its better to take it one step at a time than to stand still...

In the end, Faith is still Faith. For the most part she is very happy and sweet. She loves to twirl and giggle. I couldn't be more blessed to have her in my life. I work hard every day to be the mom she needs because she DESERVES to have a mom that will work to be better. I love her so much, I just want to know that she will be healthy, happy, and have all the tools she needs to accomplish what the Lord has sent her here to do.

Hugs and loves until next time, darlings.

Frustrations

"___________ said the cutest thing yesterday."

Such a simple, run of the mill phrase. Friends share back and forth all the adorable things that their kids say and do all the time, but when you're struggling with a child who has unexplained developmental delay, those words can sometimes seem like vinegar being poured onto an open wound.

I don't know what it is, but I have been struggling lately. Faith has been, well, Faith. Lovable, smiling, happy, and into everything she shouldn't be into...just like normal...but I have had a more difficult time dealing with tantrums and melt downs that occur from lack of communication than ever before. Maybe its just that I have been sick for the last week or so, maybe I just had my hopes set too high for her progress- who knows...but whatever the cause, it seems like every tantrum or meltdown has crushed my heart into a million pieces and I hurt for my daughter.

It also seems like EVERYONE with a toddler about Faith's age has a child who is talking up a storm and being adorable with learning how to use language effectively, and here I am with a child who is silent for the most part. Her language consists of "yeah", spoken at a high pitched squeal as loudly as she can say it and "Uh oh" when she drops something and can't reach it....

I think the thing that has been getting to me the most lately is that I never hear her call me "mamma". When she cries and I'm not in the room, I don't know if she is being her usual drama queen self and is upset because Phillie has the toy she wants or if she is crying because she needs me and is in pain or in trouble...and in the last few weeks, as she has gotten into things that she shouldn't, there has been more than one occasion where I feel like the WORST MOM EVER because I left her alone for 5 minutes and come back to find a head, arm, torso (whatever, etc.) stuck behind or under furniture and she had been whining or crying, but not to the extent that I thought she was in any danger...

Every day I hear Phillie surpass her linguistically. The other day I was holding Phillie, she patted me on the shoulder, gave me a kiss and said, "Good mamma".  It melted my heart because she is just so darn adorable and lovable, but broke my heart when I realized that, for some reason, Faith can't have those types of little moments with me. Phillie calls out for me, she can say if she likes something or doesn't..she says "hot dog" and sings along with the "hot dog dance" when we watch her favorite show Mickey Mouse Clubhouse...Faith has adapted in some ways. She will make short "ah" or "uh" sounds when they are counting, she has this thing she does with her arms when Mickey asks everyone to say the magic words to get the clubhouse to appear...she tries, bless her heart...but I can sense her frustration that nobody understands her when she babbles, and we have major meltdowns if she brings me something and I can't guess right away what she wants me to do with it.

Faith has been my little buddy lately (aka ATTACHED TO MY HIP). I'm guessing its because of all the times that she has gotten herself into sticky situations when I'm not around. It has been frustrating at times, but for the most part I have needed her to be like this lately, because, in her own way, she is letting me know that she needs me or wants me. She will come and close the lid down on my laptop and crawl into my lap and just "be"...or I will be sitting on the floor trying to engage her and she will randomly just crawl into my lap and pull my arms around her to hold her tight... those are our little moments. I am grateful for them, but I feel guilty at the same time because I DO want more. I want to hear her say funny and cute things...she is such a goof with her body language and mannerisms, I just want to know what is going on inside that little head of hers. Its like there is constantly a joke on the tip of her tongue that she is dying to tell...and it gets frustrating for both of us.

Another frustrating thing to watch is how she interacts with the other kids; especially in nursery at church. There is a little girl in the nursery, don't know her name, but she follows Faith around and tries SO HARD to get her to play with her. Faith walks away and tries to find a corner to be alone but this little girl is so persistent. I know that I should find out her name, find out who her mom is and see if we can schedule a play date, but then comes the problem of will it being a fruitful play date or if its just going to be frustrating for the poor girl who desperately is trying to be Faith's friend, but Faith, for the most part, ignores her and wants to do her own thing her way? Its a tough call, but I suppose I need to go outside my comfort zone, explain the situation to this little girl's mom and see if she would be willing to try. Who knows, it could help, right? If anything, we can take the time to teach Faith how to play with someone else and that will help her in other situations.

While there are frustrations, I have had some small victories that I shouldn't short change. I have figured out that Faith will respond to her name if I say it as high pitched and LOUDLY as I possibly can...this has led me to wonder if her delays really do have something to do with her hearing. She just can't hear language in order to make heads or tails of how to use it. We have the speech therapist coming to our house this week. I am praying that Faith will cooperate so that we can do the hearing test and get definitive results here at home instead of having to wait and schedule with an audiologist here in town.

Faith has also learned how to play with blocks. This may not seem like a big deal to some people, but considering that just a few months ago therapists in Idaho were saying that it was a pretty big deal that she didn't have a clue what to do with blocks other than eat them, I am taking it as a huge victory. She will bring me 3 or 4 blocks, I will stack a few, and then she will bring blocks to stack until the tower gets so tall that it falls over (that's her favorite part).

She is also developing a sense of personal style. She is every bit as girlie as I thought she would be. She is constantly bringing me her play tutus to put them on, and she loves to have scarves wrapped around her head like a 1950's diva (think Grace Kelly in High Society) ready to go for a ride in a corvette.  The other day, she had me put on an old dance costume that my mother in law had gotten for her at a yard sale and refused to take it off. We ended up running errands with her wearing the lovely, red frock complete with shiny silver sequins and glitter...she looked fabulous! LOL

I guess the biggest frustration is seeing that she IS a toddler and cognitively seems to act her age, she just can't communicate like a child her age. She wants to be a big girl, she wants to be understood, she just can't figure out how to do it on her own.

I know this too shall pass. I know that we are on the path to getting her the help she needs. I have no doubt in my mind that she will be able to talk in the next few years, I guess I'm just getting impatient (story of my life, I suppose).

Hopefully, Wednesday will bring us some more answers. I am praying that it does...but even if it doesn't, I know the Lord will provide the answers in His own time and in the way that they need to be provided. Who am I to question His plan?  I know Faith is destined for great things. She is too awesome not to be. For now, I need to focus on enjoying where she is as opposed to where she isn't developmentally... my frustrations have more to do with ME.

I'm so glad that my girls are loving and patient with me. I'm a work in progress, but I'm getting there. God, grant me the ability to be the mother THEY need as opposed of the mother I THINK I need to be... because that is more important than what the world and Pinterest tell me... at least I realize that its me that needs to change my way of thinking, and that is half the battle, right?

Hugs and loves until next time, darlings.

As Summer Slowly Ends... and a quick update on Faith

Its crazy to think that today is the first day of August.  This summer has just flown by...and so has this year! Have you realized yet that we are now 8 months into the year? There are only 4 months left of 2013...only 2 months until Halloween, 3 months until Thanksgiving, and 4 months until Christmas...INSANE!

Jeff started a new rotation because of the tech he is shadowing and will be doing 15 days on and 6 off for a little while. We just had his first "off period" of 6 days and we took a lot of time to just do things as a family. A lot of our time was spent at home and it was nice.

We purchased a table and a Blu-ray player that has wi-fi so we can watch Netflix on it (makes it much easier than hooking up one of the computers and trying to keep Phillie away from the dangling cords.) I bought 2 scented wax warmers on clearance for $5, and our house smells like vanilla and caramel now all day long instead of the hints of lingering cigarette smoke( a gift from previous tenants of the house..YUCK!) and that general mildew smell that comes with living in a REALLY old house with plaster walls...I'm loving the new ambiance that a yummy smelling house creates. Its weird, but everyone seems happier when the house smells nice... Our house here is starting to feel more like home and things are coming together. We do need to buy one more chair (we only bought two because Jeff thought the table came with chairs. He was wondering why I was so insistent about getting at least one more...LOL Oh well, we will get there eventually!)  Also, our new washer and dryer arrived and I am ALMOST caught up on laundry now.

On Saturday, we got to go to our first Wyoming parade...it was a first parade for the girls in general. Let's just say that Rock Springs knows how to throw a parade for fair time. We walked away with a grocery bag's worth of candy, 4 cans of soda, 4 bottles of water, 7 or 8 popsicles and one of the local flower shops even gave flowers away to the moms and older young ladies of the crowd...I brought cash expecting to need to buy drinks or popsicles, but I was wrong. It was crazy. Every float that went by, someone was handing us a popsicle or throwing candy or giving us a free drink! The girls had fun watching the horses, classic cars, and Shriner's circus cars ride by. The best part is we only live about 2 blocks from the parade route. We didn't have to deal with traffic or finding a parking spot, we just got to walk out there about 20 minutes before the parade started and wait. It was awesome!

Tuesday was Jeff's last day off so we decided we'd make the day really special. We went to Garnet Park to have a picnic and let the girls play at the splash pad. Unfortunately, we got there and were informed by some other ladies that the splash pad was broken. They had been waiting HOURS for someone to come fix it and had finally given up. We ate our lunch and let the girls play in what little water was bubbling up...it was kind of pathetic so we knew we had 2 choices- we could go to the rec center and play in the splash pad there and swim, or go buy a pool with a spout so that we could have our own private splash pad...

We opted for the latter since I don't have a car to get places when he's a work and we figured it would be nice for me to have a way to spend time outside with the girls as summer draws to its close.

After spending almost an hour trying to find one at Walmart (it took almost 45 minutes to find an associate to help us find where they'd put the pool stuff...VERY frustrating) we opted to go to Kmart because they didn't have anything like what we were looking for. At Kmart, we found several options and ended up with a circle pool with a water slide and a zebra head spout that sprays water onto the slide. Faith picked it. We held the boxes down in front of her and asked her which one she wanted. It was a good choice. We also were pleasantly surprised to find out that it was on sale. It ended up being $10 cheaper than we had thought it would be.

Here are some pictures of the fun the girls had:

So...we embark on the next 15 days. Jeff will be working and I will be having fun with the kiddos during the day, and we will enjoy the family time we get when he's home. I love that we can all just snuggle up together and watch a movie at the end of the day for a few minutes, say evening prayers and Jeff and I have the rest of the evening to talk about our day and smooch (yep- that's right, we're married and we smooch! Get used to it!)

We love our new ward and have quickly made friends. Jeff's one regret is that he doesn't have more time off in the evenings. There are several guys in the ward that play frisbee golf and Jeff would love to go out and play with them and do tournaments with them...

In short, as much as I wasn't sure if I wanted it to be, Wyoming is quickly becoming "home".  I miss my green hills in southeast Idaho and being somewhat close to my family, but the people here and the similar climate make it easier.

I am very blessed at the moment and I am on my knees every morning and night thanking God for bringing us through the Hades of unemployment. Hopefully, with any lucky, Jeff will be on payroll soon (instead of a contractor through SOS) and all of the nerves surrounding this job will dissipate and I can REALLY allow myself to settle in.

For good measure, enjoy some pictures of the fun we've had today:

and video of Faith dancing and then hiding from the camera inconspicuously when she noticed I had it out....

Faith is a little character. She loves to dance and copy dance moves of characters on the shows we watch (we definitely have a flexible little ballerina on our hands.) Her favorite moves are leg extensions and twirling.  She loves shows like "Shake it Up!" and Angelina Ballerina because she gets to dance every time a character starts to dance. Too cute and funny. Still no headway on talking yet, but she has gotten much better at problem solving and figuring out puzzles. Its a slow process. The Infant Toddler program here is going to do her hearing test and if that isn't the culprit, they have a developmental psychologist who will test her to see if we can get a firm diagnosis of what is going on and help us find better treatments once we have an idea of what the cause may be. I'm feeling very fortunate that we were able to move here where the program is a little better funded. We also talked today about the possibility of taking the girls to Kindermusic classes at the Child Development Center here for free. I am excited to do it and take part.

Hugs and loves until next time, darlings!

P.S> I will be posting a few recipes later today. Stay tuned!