Here we are

I haven't blogged in quite a while, but if we're friends on Facebook (and we most likely are) you're pretty well kept in the loop of the things I find cool going on.  We've had lots of things going on since around about July, but maybe I'll go into that if I do a year end review of how life is at this point.  We will see.

During the summer we upped Faith's O.T. to two times a week.  Today we had to do a review and resubmit to the insurance (they were awfully picky and cranky about the fact we wanted to up it to two days a week, so it was only cleared for 6months).  The school wouldn't okay the up in services because the superintendent was being names I shouldn't say (or probably even think), so we just went around the school and got Faith what she needed.  Anyway, upon our review today Faith has hit about 70% of the goals we had stated for her.  She has never. hit. a. single. goal.  Seriously, it's always been 0% met (while she learned tons of coping skills and I gained much needed information to help her).  She finally has enough things in place that she started making progress on the goals that were written out for her.  They are simple.  Simple, everyday things, that many take for granted.  She can now put her pants on by herself (not the kinds with buttons and such, but yoga type pants). Put her arms through correct arm holes, doesn't throw her silverware after she takes a bite (it's weird 'cause the "throwing" always looked way more like a reflex than anything else).  Is handling bath's better.  She likes playing in water, but isn't a fan of bath's.  She will now for the most part at least stand there and let me give her a bath with the realization that we will be done much sooner if she just stands there.  I can get her hair brushed about 80% of the time.  That's a massive improvement.  We are still on our ever ending quest to the the potty-training thing down pat and desperate for more speech.  On that note, I learned of a resource just today (today!) of a place that does Speech therapy and will come to my home twice a week to work with her.  So, I don't have to drive the hour away to their facility.  I will be calling them in the morning to learn more about it all.  Fingers crossed this is what we're looking for.  The speech therapist she's had for the past 3 years is great, but she needs more.  He is stretched pretty thing with all the different places he needs to be.  I've had her in private speech for a year before, but then she began getting more individualized speech at school and I didn't feel she needed to continue it (also insurance was being a pain in the rear end with approving it).

We had parent/teacher conference today.  Both kids are doing well.  I found out Faith is not in her classroom very much at all during the day.  It's apparently about 30-45minutes a day.  The rest of the time is one on one with her aid and the Special Ed teacher.  Which I find a good thing, as I know Faith will do and learn more one on one.  Oh!  She also stayed right beside me during the meetings holding my hand.  She was SOO good.  She usually wants to run off and check out what she wants to check out.

Angelus whose teacher is Faith's speech path (see, he's kind of being pulled in a lot of directions) is also doing well.  He had A's and B's. The B was very  close to an A.  His teacher stated that he is one of his top students.  That doesn't really surprise me.  Apparently, most of the kids Angelus hangs out with also do fairly well academically. He got lent the 2nd book of the Hunger Games series, Catching Fire because he is "seriously advanced" (those were the teachers exact words) at reading.  Now, for to just finish a big, chapter book.  I've no doubt he has the ability, now it's just the want that has to stay there.  I know his teacher has also commented that Angelus is just becoming a "more rounded student".  He's interested in trying more things, trying to visit and play with many different kids.  Wants to be involved in more things.  Suppose, if that's why he's wound up with the B's here and there that's an alright reason.  We would seriously have to reevaluate if he winds up with some C's, though.

I think we're pretty much ready for Christmas.  No presents are wrapped, but if we put 'em out now they wouldn't stay that way until Christmas day (eve)so we will wait 'til a day or two before we celebrate.  Angelus did a fantastic job at decorating the tree.  It was fun to watch him do it and see how excited he got about doing it all himself.  I do hope everyone of you have a beautifully, wonderful Christmas (or whatever Holiday you celebrate) and a safe New Year!

No one Really Knows how They do it

"I don't know how you do it."  I hear and read often that being a parent of someone with "SpecialAbilities" this particular phrase is supposed to annoy me.  It doesn't.  I think it's kind of silly to be annoyed by it.  Most of the time I have no idea how we do it either, other than trying our best and loving our most one day at a time.

The things I have heard that have and do annoy me, are when someone says

"Other than her not talking, she's just like any other kid."  It comes across as if they're disregarding everything else she has worked so hard at.  I know if she were speaking, she would still have other challenges that other "typically" developing 6year olds don't.

"I just don't think she understands the importance of speech."  Now, this one REALLY ticked me off (I said nothing to the person who said it 'cause ya gotta pick your battles, and ultimately at the end of the day....it wasn't a battle worth fighting--yet).  I am fairly sure she would LOVE to be able to tell me if she was hungry and hungry for what instead of tossin' my hands near whatever it is that she wants and jumping up and down smacking herself on the legs because I'm not getting it, OR when she is sick I imagine she'd love to be able to what she needs and what I can do to help her feel better.  I am certain she understands the importance of speech/communication.  We work everyday to try and help her find her inner voice.  She is able to communicate more with us now than she was 3years ago.  There is still no speech, but thinking outside of the box and being an amazing critical thinker are a couple of her strengths.

"She should be potty-trained"  [while giving me that look that -clearly- says it's because I'm not trying nearly hard enough and ultimately makes me feel like I'm failing as a parent.  I already feel that way enough with my 6yr old not being potty trained].  No parent wants their child to be an adult in diapers. It wasn't until last summer before she didn't flip out every time she walked past a bathroom door and scream and close the doors.  Everyone in our household was having to use the bathroom in the dark until the end of last summer/early last fall because it bothered her so much.

"We are not a school so we don't do that kinda thing." this was after I went to see about getting her involved with VBS at a local church and spoke to them about some of her challenges.  She had went to school with several of the kids and they knew her, and I wanted her to be in the class with her classmates instead of being in the nursery area.  I knew the lady that would be the teacher and the lady in the nursery so I just went around the first lady and talked to the other ladies.  The nursery lady who, if my little one needed a changing was more than okay with helping out.  The teacher lady had seen my girl since around when she was first born, and was okay with her being in her class as well.  I still firmly believe I should have never been told that by the first lady, because that is one way to get families to shy away from church in general.

Tommy heard this one I didn't.
   "Your child wouldn't have Autism if you just prayed it out of her." I have actually heard others tell me "She wouldn't have it if you had prayed more and had more faith."  Which I think is ridiculously stupid (and also not very Christ-like either).

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I'd love for some to offer to come and hang out with the kids so I feel like Tommy and I can have  some time to ourselves, but there's the whole problem with the fact we are INCREDIBLY picky about who we will allow to watch our kids.  I mean, it's like only two people we're comfortable with and they have lives/families/kids of their own.  When someone offers and are genuine about it (and not just saying it because they think it's the polite thing to say) it is very much appreciated, even if we don't ever take you up on it.  This past school year both kids stayed the night away from us one time and it very well may have been the first time BOTH kids have stayed away.

Asking me to hang out with or without our kids, I like that and not feeling put out when I take you up on your invite.  If I feel like you're feeling a tad put out, there's a good likelihood I may give it a try another time or two but after that....I'll assume you were just trying to be friendly but didn't really want us around (there may also be a good chance I'm a tad hyper sensitive about that).

I figure I'm much like any other parent in this regard, though.

Will it Bring you Together or Tear you Apart?

What would you do if realized you needed help with your child?  If you realized they were going to need significant care for the majority of their lives?  How would that impact your relationships, friendships, marriage?  I've read (several) articles  sighting that the divorce rate of parents with autistic children is up to  80%, although I did come across one earlier today that said it was more 24% as their children are in their teen to adult years (parents with typically developing children were 14%)...so there was a bigger likelihood for parents with autistic children to divorce as their children are getting older as opposed to other parents where the likelihood decreases.  I have no idea how accurate these studies/findings are, but there's been many sighting the divorce rate is significantly increased.

Tommy and I do get along fairly well.  I think we do a better job now, than we did a few years ago.  Around year 3 of our marriage we were [probably] ThisClose to getting divorced.  That was before Faith was even born.  The things that most likely saved us, was I had been divorced before and it sucked.  It sucked a lot.  I didn't want to go through that again (for better or worse).  We weren't ready to totally give up on it all.  Even if that meant we lived in the same house and didn't speak to each other.  It probably wouldn't be much of a stretch to say I didn't say a word to him for a good 2months (possibly longer), but was not ready to give up on this.  Obviously, he wasn't either.  We finally did have some meaningful, difficult conversations that began our road to getting back to where we were, where we needed to be.

During the time of discussion that Faith might have autism because she was 3 and didn't talk (at all) and she screamed and cried 12+ hours a day and nothing we did ever seemed to help it, we came together more.  We had to.  We had to learn how to better communicate what we needed from each other to make this all work.  Giving each other the support and encouragement we both needed, our kids need to see that from us.  We're not mind readers, so we had to figure out how to let each other know just what we needed.  I know during this time, for me at least, it brought me closer to him.  He was on "my side" to be my partner, encourager, supporter, and friend.  I found more of a "one ness" in the marriage than what I had ever experienced before.  He never once made me feel "crazy".  He took all of my concerns seriously and listened without making me feel silly, stupid or less than.  He can sometimes make people feel stupid (intentionally and unintentionally).

Like he's said (and I've heard so many others say), it can bring you closer together or it can tear you apart.  We chose to come closer together and as long as we continue to communicate our wants and needs, support and encourage each other we'll continue to grow.

Where My Heart Is

Encouraging marriage, lifting up our spouses, and learning more of how to become "one".  This is on my heart a lot lately.  I know I've got a couple of friends on Facebook that do such a fantastic job of showing encouragement to others.  I appreciate that such a great deal.  I also get that it's a "cyber world" and we can choose to let others see the sides of them we want to let them into.

I was married, very briefly, before Tommy. My first husband and I did a fantastic job of forgetting to act like we actually wanted to be married to each other and screwed up in some pretty massive ways (okay, I did.  I can own my part and since I am not him I can not speak for him).  While I'm not totally against divorce (there are some incredibly good, valid reasons to get the heck away from each other). It is something I wouldn't wish on anyone.  Strange and silly as it may sound, no one ever talked with me about all of the guilt that would surround you for years to come once you went through a divorce.  I think that should be stuck in the pre-marital counseling somewhere, just so people are aware. Life did get better for me (probably for him  too, as I said we did a fantastic job of forgetting to act like we actually wanted to be married).  He's a good person, I try to be a good person. I've  no doubt he's a fantastic father to his children and I also try to be a good momma to my children.  Some days I'm more successful than other days.  No matter what, though, my children know I love them and I'm proud of who they are and who they are becoming (even on my cranky days).  I always want to remember the first marriage, not because I want to live in the past but because I NEED to always remember not to take my spouse for granted and to let him know how thankful I am that we are where we are.  We learn so much from our past experiences.  It's good to take that with us, remembering to repeat the positives and not repeat the negatives.  I want us (Tommy and I) to do a fantastic job of remembering that we wanted to spend our days with each other and treat each other as such.

I try to be honest and real...in life and in the digital world, and fall short in both regards more often than I want.
Sometimes I don't post things because I don't know how many know not to take me too seriously often.  Or that even though I don't tend to curse, I'm not generally offended by it.  I mean, Tommy swallowed a toilet, according to our friend Callie (granted, she said this back in high school about him)....and my sister uses the "F-bomb" for any and everything. It's one of her "things", I guess.  I don't like to put out there my insecurities of getting to be the mother to these two amazing children.  I also scale it WAY back on what we actually go through with our littlest one.  I don't know where this paragraph was going.  Maybe I should stick it in another blog post when it comes to me.  For now, I'll just leave it here.  It is my blog and it can be as random as I am, right?  ;)

Findings and Communication

Discussing my "findings" with Faith's O.T. about what I've came across, it was brought to my attention that Faith has even more of the "symptoms" of the 17q21.31microduplication.  She has hyptonia (low muscle tone).  I didn't think she had this because she is SO stinking strong, but she has hypermobility to compensate for having low muscle tone.  These are things she is working with the OT on too.  Whenever she is in a relaxed state she is incredibly limber and can "flop" just about any direction.  She can do that when she's awake too, she just doesn't tend to "flop" but is SUPER flexible.

Those of you who've been following along over the past few years know of the difficulty we had with trying to get her a communication device and that we were ultimately denied it, after over a year of working at it.  Then around the middle of PreK we tried to get her a ChatBox 40+ (or something like that), we were unable to get it too as our insurance didn't work with the company who put that specific device out.  We finally got her a GoTalk 20+, it came in around the beginning of May.  I waited until she was out of school to try to program it.  I wasn't able to get it to record anything or to change levels.  I thought maybe I just wasn't smart enough, so I took it in to people who've had more experience with it than I have.  They were unable to get it to record or change levels either.  I then called the company.  One lady I spoke to thought I may have accidentally put it on "level lock", but it still wasn't doing anything after I did what she recommended.  She had an actual "tech" person contact me the next day and we went through the steps again.  Still not working.  Had to sent it back to them.  They are going to either fix it and send it back or send me an altogether new one.  Of course when Faith saw that there was a sticker on the back she ripped it half off.  It didn't look so new when I sent it back to be fixed.  With any luck we will have it back and fixed in a couple of weeks, and try to work with it more before school gets going again.

Gettin' A Little Science-y (but not too much).

I recently decided to start some investigating on the findings the geneticist presented us with back in December on the genetic testing and the soft metabolic testing.  He stated that there were "currently no clinical significance" with the bands that they found the copy gains and copy losses on.  So, I got to thinking.....maybe them all separately weren't anything, but maybe put together it was just enough to impact Faith the way it does.  Her OT has said she is one of the most difficult cases she's ever worked with.  We've even increased OT to see if it will help her out.  The most difficult thing is that there is nothing she's motivated enough by for it to be a "reward".  Anyway, I'm researching the genetic findings at the moment.  Haven't made it to the metabolic testing, yet.  The genetic mutations they found were: 3p21.31  (40kb) copy loss
                                                 16p13.3 (40kb) copy gain
                                               17q21.31 (90kb)  copy gain

Now to sound *kinda* not very smart.  I've no idea if 90kb is small enough or big enough to be a microduplication, or if a "copy gain" or "copy loss" is the exact same thing as a duplication or deletion.  I keep on searching.  I'll eventually have it figured out.  Eventually.  I've read some of the medical journal entries for it.  That stuff is not easy to read.  I remember doing several peer reviews while I was in college and I found them to be about as entertaining as watching paint dry (no matter how interesting the experiment was).  Fairly sure they even caused me to lose brain cells instead of becoming smarter.

 If there is something to it, the 17q21.31 copy gain DID sound like it may be of clinical significance.  There's tons more info about the deletions, and not so much about the duplications.
So, here's some info I found about it.  It's kinda long (but one of the only pieces that was written in more of a layman's terms).  p.s. I can't get it to un-bold half of this stuff.


17q21.31 microduplication:

This condition is caused by a gain of genetic material (called a duplication) on chromosome 17 and has only been recently characterized. There are very few people reported with this diagnosis in the medical literature, and each of them has features of autism spectrum disorder as well as behavioral problems.
There is no cure for this condition, but having a diagnosis can help guide a person’s health care. In addition, having a diagnosis of 17q21.31 microduplication syndrome in one family member allows for targeted testing of at-risk family members.

Features
17q21.31 microduplication syndrome has been associated with many features. These range in severity from person to person (variable expressivity). It is possible that some people with the duplication may not have any features at all (in scientific terms, the condition has reduced penetrance and a person with the duplication but without clinical features is considered “non-penetrant”). In other words, having this duplication likely leads to a predisposition for certain features. Some of the more common features are discussed below.
Some people with 17q21.31 microduplication syndrome have been reported to have low muscle tone (hypotonia). If this is severe, it may lead to feeding difficulties and slow weight gain (failure to thrive). Additionally, there have been reports of loose joints (hypermobility) and inguinal hernias that require surgery.
A person with 17q21.31 microduplication syndrome typically has subtle, unique physical features. However, it may be difficult for someone other than a genetic specialist to recognize them. These features may include large-appearing ears that have fewer folds than what is average, a short nose, a small chin and mouth, and a tendency to have more body hair than expected (hirsuitism).
A person who is diagnosed with 17q21.31 microduplication syndrome may have anywhere from normal intelligence to severe intellectual disability. Because only a few people are known to have this diagnosis, it is difficult to make predictions about the cognitive abilities of someone when they are first diagnosed with the condition. In general, people with this condition are diagnosed with autism spectrum disorder based upon poor social interactions, verbal difficulties, and behavioral problems.
As this condition has only been recently characterized, it is important to keep in mind that over the next several years, more information is likely to become available. Currently, it is difficult to predict the chance for a person with 17q21.31 microduplication syndrome to experience each of these associated features. As more people are diagnosed, and as the parents of those children are tested, we may gain a better understanding of how many people have the duplication, and what percentage of those people have each of the associated features.
Statistics
17q21.31 microduplication syndrome is a rare condition that has only recently been characterized; therefore it is difficult to pinpoint just how often it occurs. This is because there is a wide range of disability, and some people with milder features may not be diagnosed. Most duplication syndromes affect people of all ethnicities and both genders equally; so, it is expected for this to be the case with 17q21.31 microduplication syndrome. Based upon other, more widely-known duplication conditions that have a similar cause, 17q21.31 microduplication syndrome is estimated to occur in about one out of 20,000 to 30,000 people.

The cause of 17q21.31 microduplication syndrome is a duplication of multiple genes on one copy of chromosome 17. This duplication is often the result of nonallelic homologous recombination or NAHR.
NAHR occurs when regions of the chromosome that have similar sections of DNA are misaligned. When the chromosomes are copied the result is one chromosome with a duplication and deletion. When this occurs in reproductive cells (sperm or egg cells), a baby can have a syndrome associated with either the duplication or deletion. The syndrome caused by the duplication and the one caused by the deletion are called reciprocal conditions. 17q21.31 microdeletion syndrome is the reciprocal condition to 17q21.31 microduplication syndrome. It is important to note that a person can only have one of these conditions. When a person is found to have this duplication, it may be either de novo or inherited. If the child is the first in the family with the duplication, it is said to be de novo, or brand new). Alternatively, it is possible that the child inherited the duplication from a parent. The presence of 17q21.31 microduplication syndrome, whether de novo or inherited, is not caused by anything the parents did before or during the pregnancy.

This section is meant to be a guide for some of the more common features that may arise in a person with 17q21.31 microduplication syndrome. Someone with this diagnosis may not have difficulty with all of these features, or may have additional problems not listed below.
It is important to keep in mind that the medical community is still learning about the features associated with this condition. Over the next several years, more information is likely to become available. The following sections are based upon the published medical features of people who have been diagnosed with this condition.

During pregnancy
In many cases, there are no signs or features during pregnancy that indicate a developing baby has 17q21.31 microduplication syndrome.
As a newborn and infant
Infants are generally born around the expected due date. Overall, their birth weight, length, and head circumference are typically within the normal range.
There are generally no birth defects or major medical problems, but some infants may need repair of an inguinal hernia, which is a fairly routine procedure. One infant with this condition reportedly was admitted to the hospital due to failure to thrive. There are many causes for failure to thrive: these include feeding difficulty associated with hypotonia or developmental delay/intellectual disability.
As infants grow into childhood, some have been noted to have a smaller head size than expected (microcephaly) and others have been noted to be shorter than expected. For this particular condition, microcephaly and short stature have not been associated with any medical problems. Hormone problems may potentially be a cause of the child’s short stature, and it has been suggested that people with 17q21.31 microduplication syndrome be evaluated for hormonal problems.
As a toddler and during childhood years
Toddlers with 17q21.31 microduplication syndrome generally have delays in their development. These include delays in achieving milestones such as walking, talking, and also social development.
Children who have been reported with this condition learn to walk, but this may occur later than expected. Of the few children reported with this condition, they learned to walk somewhere between 12 and 60 months of age.
Children with 17q21.31 microduplication syndrome also learn to talk, but this may also be delayed, and may ultimately be limited. Specific verbal difficulties include poor auditory memory, sentence formation, and word finding abilities, as well as inability to follow directions.
Finally, children who have been reported with this condition have behavioral problems. These include aggression, outbursts, and obsessive-compulsive tendencies. Additionally, people with this diagnosis may be diagnosed with and treated for neuropsychiatric disorders such as depression and attention-deficit-hyperactivity-disorder or ADHD.
Much like other children, those with 17q21.31 microduplication syndrome will have common illnesses, injuries, and challenges. Children with 17q21.31 microduplication syndrome have had sleeping problems as well as difficulty with toilet training.
A child with 17q21.31 microduplication syndrome who has intellectual disability may require extra attention in the school setting. For these reasons, as well as the possibility for behavioral problems, a child with this condition should have a neurodevelopmental assessment through early intervention services, a developmental pediatrician, or through the school system. Early intervention services are typically available through state programs when a child is young (usually up to three years of age, but check with your local provider or school district). After that time, a developmental pediatrician or the school system should provide assessments that will help to create an individualized education program or IEP. IEPs help ensure that a child receives the assistance he or she needs to reach educational goals based on hisor his personal abilities, and are updated yearly by the child’s team of teachers, administrators, and parents.
During teenage and adult years
In general, for a teenagers and adults with any genetic condition, lifetime achievements will depend upon his or her level of intellectual disability. For instance, being able to complete high school (generally with some special education or resource assistance), go to a vocational training program, hold a job, and live independently are all possible, but likely to happen more often in those with milder intellectual disability.
It has been noted that people with this condition have poor or limited social interaction with others. Because teenagers and adults with 17q21.31 microduplication syndrome may not understand social cues and may have poor non-verbal communication, it can be difficult for them to develop long lasting relationships. Through various organizations, teenagers and adults may be able to connect with others and develop these friendships.
Because 17q21.31 microduplication syndrome follows an autosomal dominant inheritance pattern, each child born to a person with this diagnosis has a 1-in-2 (or 50%) chance of also having 17q21.31 microduplication syndrome. When considering parenthood, it is important to remember that the type and severity of features can vary (variable expressivity).
Although the medical community does not have specific information on older adults with this condition, there have been no major medical complications reported to date that would indicate a short life expectancy.

In a few of the other pieces I've read they talked about the difficulty sleeping, or having in general a messed up pattern (I'm sure the scientific journals put it that way). ;)  They also discussed the non-verbal to very limited speech, serious difficulty with potty-training, having to have dental work because of softer (or teeth with no enamel), along with the person having "bouts" of laughter that can last for hours.   All of those things are going on with my girl.  Along with a lot of the stuff above.  She doesn't have extra hair, or difficulty with mobility.  There may be something to the eating as she tends to prefer food that has the consistency of mashed potatoes, peanut butter, insides of oreos, pudding.  Who really knows for sure (I do not, just trying to make sense of some things).

Parental.....Fail?

In the beginning of March I bought Angelus 3 new pairs of jeans (a size 10 Regular), 2 warm up pants and some other clothing.  He was outgrowing the jeans I had just got him back in December.  Around the end of March he comes out of his room all dressed for school, saying he can't wear ANY of his blue jeans.  They're too small.  I thought "you have got to be kidding me!"  He continues to show me just how they're hurting him terribly, and sure enough there is a painful looking indention on his right side.  He had one on his left side to a lesser degree. 

I did the only thing I knew to do, went to the store and bought him two more pairs of jeans.  I knew he wasn't nearly tall enough to go up to a 12R, but couldn't hardly believe my boy was gonna be a size 10Husky.  I only say that because I know the size of his parents and the size we were when we were 9ish.  I was a pint-sized person...couldn't have been more than 3ft. 8in or so and weighed on the lower end of what a 3ft. 8in person should. While Tommy apparently didn't top out at more than 40 or 50ish pounds in 3rd grade (I really think he told me once that he weighed 40pounds for a huge chunk of his elementary school career).  Although, Angelus is bigger than what Tommy or I either one were at his age.  I've generally thought he seemed to be smack average size.  Occasionally he's a tad shorter than his classmates, but for the most part he's an average sized boy.

Anyway, I buy him two pairs of 10Husky and bring them home for him to try on.  They are insanely too big for him.  Even after cinching up the sides as much as I possibly could.  Come to find out, his 10R (and even a pair of 10slim) fit him just fine.  He just grabbed the closest pair of underpants he came across and they were a size 4.  Ouch!  After discovering this, I knew what I had to do. Clean out ALL of his drawers and closets of anything too small because if not he would just assume it fit and cram himself uncomfortable into it all day.

A Kindergarten Graduation!

Faith graduated from Kindergarten last week and pretty much every time I think

She kept her gown on, but apparently the cap had to go.

about it, I get a little teary eyed.  She walked down the walk way most of the ways by herself.  The kids in Pre-K and Kindergarten got how big of a deal it was and cheered her on.  It was awesome!  Pretty sure it got the biggest reaction of anything that day. I really wish I had a video of it (and if I do get one, I'll put it up here for others to see what great kids she's got on her side).

A boy and his Poppa or Paw-paw (grandpa) played the fiddle....and the kids sang to the song they were playing (which was also the tune to Victory in Jesus, but that wasn't the "catchy" kids song the little ones were singing.  I couldn't quite figure out what it was as Victory in Jesus was all I was hearing in my head).

A boy and his grandpa fiddle playing.

After the teachers awarded the kids with their diplomas the kids each one went up to a little microphone and stated what they wanted to be when they grow up.  Two little girls in Faith's class got on either side of her, grabbed her hand and walked up to the microphone with her.  One of them said...."When Faith grows up, um.....we *think* she wants to be a princess."

Faith is the one with her back to us. The other little girls letting us know what they think Faith may want to be when she grows up.

Perceptions

Or is that sometimes a nice way of saying "judgments"?   I don't know for sure, but I'm positive I've been guilty of "misperceptions" and "judgments" even if I never intended to be or wanted to be. I know others have thought if they were in my shoes, they could've and would have done it different/better...but they didn't or haven't seen all we do at home to make sure our child can cope with going outside around others.  They don't see the endless piggy-back rides, swinging, spinning, turning televisions off, radios off just so she can handle the noises of the outside world. OR the hours of car rides at all crazy times of day or night. The screaming and jumping up and down at us for hours because something is out of whack and she is trying her best to tell us, but we're still not getting it.

The past few weeks I've noticed more parents I know who have children on the spectrum escaped their little bubble and posted about wonderful (and sometimes things that make 'em want to bang their head on the wall) stuff about their children. They commented that it's hard to put that stuff out there for others, and it is.  I've noticed that sometimes getting the support they need is often not quite there, and often it appears that those inside of the autism community can be the cruelest and least supportive.  I don't think they mean to be (at least not usually).  Some have just been doing this longer than others and have had success with various things....while others have had no success with all they've tried.

Someone may think if only the parents would follow this special diet for their child (not knowing they spent a year very diligently on this diet and nothing happened except they couldn't eat hardly anything, but behaviors stayed the exact same).  If they only offered their kid this or that to eat eventually the kid would get hungry enough to try it.  I'm here to tell you that is wrong.  Not for all kids, but some.

Then the whole vaccine debate....if you give your kid vaccines, they're gonna be screwed up.  If you don't give your kid vaccines you're gonna be guilty of them having a whole host of sicknesses and most likely giving them to someone else.  Seriously.  Everything on either side scares the pooh outta me.  Why cant someone just give you transparent information (instead of accusing you of being the worst parent on the planet because you're choosing one or the other....and what you're choosing is generally because it's what you believe is best for your child---which makes you a good parent).

Others think if I just *made* my daughter speak, she would.  Going as far as to say she probably doesn't even understand the importance of speech.  I'm sure when she was so sick for those almost two weeks she would've loved to be able to tell me how to help her so she wouldn't have been in as much pain for as long as she was.  If I just took her to the bathroom every 30min. she would've been totally potty-trained by now (or ya know even kind of).  No one wants their child to be an adult still in diapers, so we try.  That's all we can do, is just try.

So, anyway...I've been trying to put out the good and the bad about what goes on with our girl because, frankly, others need to know it's okay to talk about it and that they are doing a good job being a parent to their little ones (and even big ones). We may be all doing it a little or even a lot different, but doesn't mean it's wrong.  It's just different.  I think as long as you're doing it from the perspective that you're doing what you think is best for your child and you have their best interest at heart....you're being a fantastic parent.  

Depressed vs. Depression

When I was ten my mom had some kind of a mental break down.  I'm not exactly sure of all the details.  My parents probably told me back then (but as a 10yr old I'm sure it didn't all sink in).  She had been sad and angry quite a lot.  I wasn't sure why.  I remember having a talk with myself (inside of my ten year old head) on the exact day it all came crashing down around her.  I told myself..."okay, you gotta be super nice to mom today 'cause she's been really sad or mad and I'm tired of making her feel that way."  Roughly, that was my self talk on this particular day.  I was sitting in the living room, as my mom opened the screen door to the house.  I remember very vividly saying "hello!" and trying to give her the biggest, best genuine smile I could.  She looked at me and just started crying her eyes out.  I tried to apologize.  I must've said that wrong, or looked at her a way I didn't mean to.  After several minutes of her just crying and me trying to apologize for something.....

She looked at me and said; "oh Amy, it's not you.  Not your fault I'm crying. Really, I don't even know why I'm crying."  Later that evening she was in the ICU at the hospital.  We went to go see her. I was confused that crying could get anyone admitted to a hospital, let alone the ICU area.  Anyway, she had beautiful flowers surrounding her bed and a man that drove our church van was there visiting as well (he told 'em he was her uncle so he could see her....she was grateful as we had all grown quite close to him and his wife over the few years of attending this particular church).  They told us she had a mental break-down.  For years after that I believed a mental break down landed someone in the hospital.

When I was 17 my mom needed to go on some medication for a chemical imbalance.  She had also suffered from un-diagnosed severe depression for (roughly 20)years, and her behaviors were screaming that she needed some help. Her and my dad had gone from counselor to counselor (probably around 8 of 'em) to try to figure out to do to best help her.  Every time they got to a certain point in their journey with the counselors, mom would get uncomfortable and say "they don't help anyway" or "they're just mean people".  The 8ish one they saw, mom tried to do that again and I guess dad decided that maybe, just maybe if we encouraged her enough and helped her push through the tough stuff with the counselors she'd get to a more healing place.  He was right.  I remember him telling me..."don't give up on your momma, and give her lots of hugs.  She needs lots of hugs right now.  Even if she thinks she doesn't, give 'em to her anyway."  After mom was given medication she was almost a new person.  I mean, she was still her...her and dad continued the counseling for another year or so and she was better equipped to work through some of the struggles life had sent her way.  I've had Tommy promise me on several occasions that if he sees me going this direction to talk to me about it.  Make me get to a counselor, get on medication before it gets to the point it got with my mom before she was able to get help.  I don't want 17years of my children's lives to go by before getting some kind of help.  Also one reason I'm not -totally- against medicine. I do think sometimes we tend to over-medicate the population, but sometimes it's exactly what's needed for an individual person.

Some people struggle with depression their whole lives. I can't even imagine what that's like for some one.  I've been depressed before.  When a close friend or relative passed away or the ending of a relationship that I thought would somehow last. Those kind of things would make me depressed.  To be sad for days and days without really knowing why or what to do to fix it, hasn't ever happened.  For me, anyway, if I don't realize that someone near me is going through something similar to this it makes me feel like I've done something incredibly wrong and I go back to that ten year old girl feeling like I'm "walking on egg shells" around them.  I mean, I feel that anyway, but if I *see* what it is I realize it's more of a battle within themselves. That gives me more patience and better perception of what's going on.  It's tricky and complicated and exhausting not knowing if you're gonna get the happy/sad/mad person and how to relate to them in that moment.  Even going from having a great conversation to within minutes you can almost visibly see them going "down".  No idea what caused it, but are concerned that you unintentionally said something that triggered that response.

Depression vs. Depressed has been on my mind lately.  So, here's some of my rambley thoughts on it.

Helpers

Autism Awareness (or apparently acceptance is sometimes the more P.C. thing to say) month is over.  I had several posts I was going to put up in the month of April ( about 7ish of 'em).  Good thing I wrote down my ideas/thoughts somewhere.

The school year is coming to an end. We've had a great and trying year all wrapped up into one.  Faith going through 3 different aid's, Angelus having great difficulty with school...to the point we moved him to Faith's school, which has been almost "life transforming" here at the house for us.  It's been such an incredibly positive experience that I'm kinda kicking myself in the rear for not doing it sooner.  If I knew he'd have SO much less anxiety, be less "in your face", be all around just a calmer more leveled kid. I would've done it so much sooner.

Faith transitioning from the different aid's wasn't as "smooth" of a process as I'm sure we would've liked it to be, but with all of the challenges she faces daily (I'm sure there's even more than I'm aware of) she did very well.  She took to all of the different ladies.  Some quicker than others.  As a parent, I always get concerned how that's going to go.  An exchange or two a couple of weeks ago, made me think about some of the things the aides face.  They're primarily there for the kids.  They need to be good to the kids, that's all that should really matter.  But it's not.  It's the most important thing that matters, though.  They have to figure out how to have a good working relationship with the teacher whose room they're in the most and how to best help the child(ren) she's there for without it interfering with the other students learning. They need to have a working relationship with all of the other teachers and school faculty, be able to communicate effectively with different therapists.  Sometimes that's Speech, Occupational, and Physical Therapist (and sometimes even more), work well with the Special Education teacher, parent(s), and children.  I want to communicate well enough with them that they could essentially be "my voice" if I'm not there.  They are sometimes expected to be the "voice" of the parents, child, and school...and sometimes all of those voices are different. Now imagine an aide who has more than one child that they work with.  Maybe two?  Three?  A classroom full?  Often, they're not paid very well and their benefits are generally minimal.  All three of the aide's this year have been very different.  Different ages, different demeanor, personalities, ways they relate to her and to me...but they all had one very important thing in common.  I always knew they cared about my child and wanted to do what was best for her.  They may have all done it differently, but they certainly cared.  A lot.

I was so concerned about us adjusting to them, I had to get comfortable with them and my child needed to be comfortable with them as well that I'd never considered all of the different areas they need to seamlessly navigate.

There'd be Days Like This

Wednesday, Faith goes to O.T. so she gets out of school at lunch time (as it takes 30-45minutes to drive  there one way and it lasts for an hour). Anyway, we got home Wednesday evening and she fell asleep. I figured she'd wake up in a couple of hours, which she did....but a couple of hours later she fell back asleep (which is not at all normal). I thought maybe she was just worn out/growing/teething....well, no idea really but she acted like herself when she was awake and didn't have any fever. It probably was a blessing that she fell asleep through that whole night because it tornadoed (pretty sure that's a real word if you live in Oklahoma), and flooded. I mean, it flooded to the point that Thursday schools around us were cancelled. Ours wasn't and we live 1/2 a mile from the school house so kids get to go to school. Apparently from P-K to 12th grade there were 25students in the whole school. Several teachers called in 'cause they couldn't get out. When your school is a teacher per grade, that's TONS of teachers for a school.

One of the teachers said...I really hate to ask you this, but could you take her back home with you because we just don't have the resources to help her today. That wasn't a problem. I'd planned on keeping her home, anyway 'cause all the sleeping made me think maybe she had a sinus thing or something. Then she started getting a fever. My best guestimate is it ranged from 102-103 (I kinda was able to take it once under her arm with her squirming like a crazy person and it read 102.2). Giving her medicine is almost impossible for me now. So, I hide it in her drinks but if there's not enough of her drink in there she still won't take it. She is now strong enough that if she doesn't want to take medicine I can not make her. Fairly sure, pound-for-pound she is like the strongest kid I've ever met.

I kept her home Friday as well, and Saturday morning we she had went several hours without any fever and I thought she may be "on the mend". Nope. She got worse. Didn't want to eat much of anything on Friday, but still drank the milk I gave her. Saturday I couldn't get her to drink much and she wasn't eating anything at all. i was trying to hold out until Monday to take her to her PCP because once when Angelus was 18ish months old I took him to the ER after a period of him screaming in my ear roughly 8-9hours. The ER doctor told me that I shouldn't ever bring a kid into the ER for an ear infection (I'd no idea he had an ear infection at that time, I'd only had one my whole life---when I was 12, and he hadn't ever had one at all at that point).

Sunday morning around 5:30a.m. she wakes from a 2ish hour nap. Most of her sleeping seemed to be in 2-3hour increments. At this time her entire mouth was swollen and she was chewing on her tongue. It freaked me out.

So....lots of sleeping, not eating, not really drinking anything, fever for several days, and wouldn't take medication to help reduce the fever....then a whole mouth swollen, and chewing on her tongue. And (probably) the biggest factor of all, she is unable to tell me what exactly hurts, what she feels like...what she needs for me to do for her.

To the ER it was at that point.
It could be an ear infection, strep, sinus infection of some kind, or maybe even something more drastic. I had/have no way of knowing. Got her to the ER and to my surprise everyone was very kind, compassionate, and I didn't get "reprimanded" for bringing my child in. The doctor checked her out, no ear infections. Yay! Faith's throat was red, swollen and irritated. She thought it was strep (but can't say for sure 'cause a throat culture sure wasn't happening). The doctor asked me how Faith does with med's. I told her, "bad". Faith does VERY, very bad with med's. We got a one time injection for her. It was a big shot, that hurt her. That I'm sure of because as the day went on she couldn't walk on the leg where she got the shot quite right. 

She's walking on it fine now. Faith did fantastic with the shot, as it only took me and two nurses to hold her down to give her the injection. It's usually me and 4 (sometimes more) nurses to give them to her. We had to wait another 20min. to make sure she had no adverse reaction to the shot. For the first ten, she clung to me and just screamed and cried....in all of that I could've swore I heard her whisper a little "thank you" in my ear. Like she knew it hurt, but I was doing it to help her be well and not be in pain any longer. Ten minutes after that, she was fast asleep...and on home we came.

It's Been a Day or Two

Back in December we got the results of Faith's genetic testing, for those of you who've been wondering and I hadn't shared the information with yet.  It ruled out everything we were concerned about at this point.  In fact all of her "levels" for everything seemed normal.  The only one that was only (very) slightly off was Glutaric acidemia type1, in layman's terms, genetically speaking it looks like she *may* have Cerebral Palsy but physically speaking she does not have any issues related to Cerebral Palsy.
She needs a urine test to know for sure, but since she isn't potty trained it's hard to get one of those. The doctor wasn't terribly concerned about it and told us to come back in a couple of years to test for it. Also if it is that it would be on the very, very, VERY mild end. He did also recommend (and we are now waiting for a referral) that we take her to see a Pediatric Neurologist. I visited with a lady today about a neuropsychologist. Apparently they have some kind of machines where they can look at the speech pathways of the brain. She's supposed to tell me more about it later (as she knows more).  Since Faith doesn't speak, but makes lots of noises this may be an avenue to look into too.

We have Angelus in a different school. He has been going there about three weeks and is doing really well there. I visited with his teacher this morning and she commented that he just fell right into there, like he'd been going to that school all along. Not like he was a "new" kid.  He apparently needs to work on his multiplication, and they gave me this cool game for him to work with and get better. It's called Soft Seven.
Since he was about two years old I thought he had more energy than any other kid I had ever been around, but then I thought...maybe it's just because he's a boy and boys tend to have more energy and being around mostly girls I wasn't very good at gauging the activity level of a boy.  He went on to school and every single parent-teacher conference to date the teachers have always said "he's incredibly bright and he's exhausting"...but whenever I asked them if they thought there might be something else going on they were reluctant to say and Faith came along and has severe learning disabilities, so we focused on that.  As terrible as this sounds, I didn't want to be "one of those parents" who thought something needed to be going on with all of her kids. This school year, has brought about him having to see the principal/superintendent/teacher (and me too) having counseling because he can not sit still to save his life and for saying crazy impulsive stuff. It's also become increasingly apparent that he has major issues with focusing....I mean apparent to more people than just me.

So, before I switched schools with him I visited with the principal and told her everything we were going through with him. She said, he may have genuine ADHD, at least that's exactly what it sounds like to me. She gave me a packet to fill out for a full evaluation of him.  After the first week of school I talked to his new teacher and told her that we were wondering if there might be something to the ADHD thing, at the time she wasn't so sure, but she said she also didn't think she'd had him in class long enough to have any idea.  Yesterday (after being with him for three weeks) she approached the principal and said..."ya know, I think he may have ADD/ADHD". The principal discussed this with me this morning. So, I went in to see the teacher 'cause she has to do an evaluation of him. He is 0 or 100 miles an hour. There is no in between. She too said he was very bright and exhausting and can not sit in his seat for the life of him.  He's also a talker so he got put in between two girls that just don't say much.  I'd be shocked if he doesn't figure out how to pull at least one of the little girls outta it.  'Cause he's also been notorious for being the kid that likes everybody enough to just keep on talking to them. Which I think is pretty awesome. I love that about him.

There's more that goes into an ADHD evaluation that I ever knew.  Hearing test, eye exam (the school is gonna give him those on Monday), Copies of his Achievement Tests, 1-2 samples of his homework from each subject, I had to fill out an assessment thing and so did the teacher, also an Electrocardiogram --if there's a family history of heart disease and there is in my family, on both my mom and dad's sides. I don't think there is on Tommy's side, though. Then after all of that is done it'll be about two months before he is seen by someone.

I'd also be lying if I said I knew there was this much to it. I've heard stories before about how a kid went to see the doctor, doctor left the office for a second, came back and depending on where the kid was standing (or sitting) they came back with a diagnosis.  Although that doesn't sound like a very accurate tool...and I also know that someone with genuine ADHD and bipolar literally have brains that look different in a brain scan (and I also think those two are often misdiagnosed and really should be more PTSD stuff, but that's a whole other story).

Oh! Just to clear up any confusion, I don't want him medicated at all.  The only reason I'm even attempting the evaluation, is because every single school year (prior to the first part of this one), he's been able to tell his teachers what he needs to be the most successful he can be in class and (within reason) they were able to accommodate him.  It's generally something as simple as, he needs less distractions when taking tests. One of them, put up some poster board around his desk for him and that worked.  It blocked out the stuff that was distracting him. Also, wearing ear-buds to block out noise during those times too.  The first part of this school year, he told his teacher what he needed and she wouldn't help accommodate him at all.. His grades suffered incredibly because of it.  My hope is, if this is in place....since Angelus appears to have great self awareness (especially for a 3rd grader) and he is able to articulate very well what he needs, that this won't ever happen again.  All I really want is just for the teacher to listen to him when he tells them what he needs to be successful.

All that being said,  things are going really well now. We at least have all of the school people on the same page which will help him with some of the stuff he's been struggling with, and apparently Faith has all of those syndromes that could limit her life ruled out.