Social Situations

Hope for Josiah

I really hope that someday Josiah will be better in social situations then I am.  I dread group projects or speeches. This past semester was a great experience because I did have a group project. I have I guess just like Josiah had social opportunities when he is swimming to talk to people. This has helped me to open up to people a little, but still does not help much for me as it does him. I see changes in his social ability which is great. For me it takes for ever to get used to anyone. Sometimes I will say nothing just nod or say a few words when people are talking to me in person or even on the computer (typing is so much easier). Other times I will talk and talk and talk. Depends on the subject for the most part. Most of this social awkwardness does not apply to when I am with family and by family I mean my immediate family.

The Questions

I will more times then not walk away from talking to someone I do not know well and think: Did I say something stupid? Did I say what I wanted to say right? Did I break some social code I was not aware of? Did I say something the wrong way? Are they board or are they interested in talking? Am I talking too much? too little? too quite? too loud? I will even think back on something I said days or even months or longer and wonder if someone still thinks about how stupid I sounded (if I figured I said something that came out wrong).Logically I know the other person would not be thinking back on something so far back or even something I said not too long ago, but I still am like "grrr that totally came out wrong, social fail again, I wish this social stuff was so much easier then it is". This thought is not easily pushed aside when I have heard people say stuff about what I said. What is so sad is that even in the autism community negative things have been said, even though if their child was in same situation they would hope for acceptance. That in its self is kind of sad, that they want to scream acceptance for their child, but not accept autistic traits in an adult....their child will someday be an adult.

The Learning

I often will ask my husband did I write that out well/does that sound good/does that make sense when sending stuff to some people. Or will ask a friend is it ok to say this or that to (fill in who they are to me) and get opinions from other people on if it is socially acceptable or not. I have learned this way throughout the years. I have learned how to be social even though ti does not come naturally or anywhere near natural to me. I still wonder if I am doing it right. It is like if you learn how to  do something new and you check with your teacher to see if you are doing it correctly, but for me there is no social teacher out there. Josiah with his therapy has had help with learning at a younger age from his therapy which I know will do him much more good then me just navigating on my own. I have always just put my social awkwardness off to being shy and abused and nothing more then that. Now it kind of makes sense. I can remember when I was a kid not wanting to talk to people and so my parent's solution was to force me to order my own food if I wanted to eat out or to talk to whoever we come into contact with. I still will ask hubby to ask the waiter for something if we are out and part of this is because it makes me uncomfortable and another part of this is because well, I have not made eye contact with them once so I honestly could not pick our waiter out from the crowed of workers.

Situations

Other situations other then eating out that this becomes a problem. Well loads of places. Having to talk to a teacher about a problem I have. Questions are easier if done after class and not in front of everyone, so even being asked to express something by the teacher in front of class becomes a problem. With LM's Dr's for ex. The GI and WIC lady who are both so strong minded.When someone is so strongly opinionated and a very dominating person it makes it really difficult to get a single word in or to do anything other then sit and agree, even if I do not agree. I will a lot of times let things go like calling me by the wrong name or something just because (I honestly do not have an explanation for this one). I have issues starting conversations with people or sometimes even keeping a conversation going. I might go over something over and over and over in my head before I actually say it to someone. These types of things are exactly why there are studies out there about women who have autism finding themselves in abusive relationships more then the average. I myself have been there and am very happy to be with caring, loving man at my side now. Not out in front of me dragging me through whatever crap he sees fit to drag me through like my abusive ex that I met at way to young of an age. I am so happy hubby and I started to get to know each other online; otherwise, not sure how well meeting him would have gone. We are both kind of shy. The very first time we met in person he probably wondered why I was not talking to him hardly at all. I have opinions on things, but it is extremely hard for me to express them. I find it hard to for ex point out if a carseat is being used wrong according to the manual (even if the baby's life is at stake). Even though I am nice and do not think badly of many people I have still been called a cold person. I have still been called rude and other negative qualities I do not try to be, want to be, or even knew I was doing.

The Good

I have spoke up to some people about this when out and about and in the end I feel like adrenalin is rushing through me and I half stalked them before even bring it up. I have stood up for my ability to breastfeed my hungry baby in public. I have stood up for my son when he has needed someone to speak up for him. I have advocated for him far better then I could myself. This blog was created for him and I have expressed tons of stuff about him, but have never talked much about my self. Through my time with God(took a year off of no dating and no looking for anyone) and myself, getting married, and having Josiah I have found more of a voice for the people in my life and for myself. For the ability to say NO, I will not do that just because I am a nice person (I still kind of struggle with this one a lot, but is possible to say no sometimes now). 

What Life Has Been Lately

School

Will start with yay!This semester is almost over with. We have a group presentation, for our group project that has been going on the whole semester, this Thursday with this comes a class, self and group assessment. Then the following week after that we have a group paper that will be 4-6 pages long and a individual paper that only needs to be a page long. I am so happy this class is almost done. First paper I did for it I got a 68% and still had an A in the class over all but feared I would get the same on my other two(then supposed to be three) papers that I had left until the end of the semester that were to be written the same way. I got one of the two papers back and got a 90% on it which makes me much happier. I am even more excited(besides thinking of buying books-one of which is 95$) about next semester. I will be taking my degree needed young children with special needs class and a photography class. I am excited about the classes but not so thrilled that I have to get up so early two days of the week for a whole semester. I have done this before with a summer class, but they do not last as long as a regular semester class. For the summer class it also was the only class I was taking where as for this semester I go straight from the one class to the next on Monday and on Wednesday I get to go home after class, unless I have to do something on campus for my special education class (I know there is an extra out of class thing that I have to do, but not sure what yet).

Swimming

Since Josiah has been done swimming with his instructor he has been down to only going once a week with us. Josiah has been doing better with less swimming this time then last time we were unable to swim as much, but I can still tell the difference. I got a cover for my phone, so I am able to take underwater pictures and videos. I have so far only taken video's as I can not get the button to push for taking pictures under water. I looked up on how to resolve this problem and have downloaded a camera that has a timer option onto my phone. I am super happy they have wonderful lighting at the place we swim. I was hoping to get back into three days a week swimming with LM this week, but his teething has caused some issues again and so we have to wait until his loose stools clears up before getting in the pool again. We are hoping that since both top 2 year molars are in and one bottom has fully broke the skin and the other just broke the skin that by the time LM will be swimming with Michael again that we will not be dealing with crabby teething toddler with chances of not being able to swim due to loose stools. 

Aspie

I was shared two different tests from an aspie friend that said based on diagnoses requirements I am considered an aspie. Then I got a copy of a test from someone that said it was the test most psychologists give to adults to see if the have aspergers which again told me I did. I have had thoughts about it as I learned more about stuff with LM that might be on the spectrum as well. 

LM's Over All Health

Just like last year and the year before the month of December seems to be more about getting health issues figured out then just enjoying Christmas. Luckily this year I have the tree up and lights up as of the past Saturday so we won't have a repeat of last min throwing lights up a week before Christmas(was about to not put anything up). Dec 11th LM goes in for his initial visit to the sleep clinic and hopefully will get an apt for a sleep study, so we can rule out any health reasons as to why he keeps waking up at night. I am cool with dealing with him waking at night if there is no health reason as to why he is doing it and want to get a health reason resolved if that is why he is waking at night all the time. The 18th of Dec. a week after the initial visit we have to cancel our chiropractor visit and go into the hospital to do a scope. This is to rule out any GI issues as to why LM will not gain weight. His therapy was unable to get a go ahead to feed him gluten so they will take his temp first thing, Jason will give him gluten and then they will take his temp after his two hour therapy is done. We are two weeks from scope this Wed so hoping that will be enough to show something since we have been waiting on permission to go ahead with it. Praying he does not have any bad reactions to the gluten and praying that we safely get through the scope procedure as he will be sedated for it. He can only have clear fluids starting at midnight and can no longer have fluids after 5:30 A. Wish us luck/pray for us on this one as he wakes up several times at tight to nurse. 

Guest Bloggers

I have asked several people to guest blog on the blog, so in the future there might be some posts by a few guests. As no one has a deadline as to when to get it done and I have given them all the option to be anonymous, use name, or a nickname of their choice I can not give much information other then a couple of people are thinking about it and have few others interested in it.

Acceptance

 I have talked about how we have come to the conclusion that Josiah has autism and where he is at now with therapy and swimming, but I have never touched on the journey to acceptance much. I really do think I need to share that it wasn't just like waking up and thinking okay, he may have autism and well that is fine with me because that is the way God made him. It was a process that took time. 

When Josiah was younger something always seemed off with how he interacted with me and other people. I had put this off as being possibly because he was breastfed and I did not know many people who breastfed. I also put off his insane need to be swaddled all the time and tightly for the same reason. As he got older I wondered if he did have a delay of some sort. I had even made comments like "he seems socially off, somehow". I just could not put my finger on it. Even though I had know about autism, I mainly knew about the typical autism. The low functioning or middle ground functioning, but did not know anything about the higher function type or that there could be autism without repetitive movements.

I did dawn on me eventually that he may have autism. I started asking ?'s to some people that knew their kids had autism and got mixed answers on my child's behavior being normal or not. I went back and forth with the he has it, to no way he has it, and back to maybe he does. We got a hold of an early on program and although they felt he was showing some signs of autism they said they do not like to label a child so early and that we would have to wait until preschool. Luckily before then Jason and I had come to the conclusion that he probably had autism and that we were not going to take a wait and see kind of approach, since that is never the best approach to take with young children and brain development.

Through the place not diagnosing him and knowing how far behind he really was, I went through some tough times. At 17 months he had the evaluation and he was: 13-15.5m for thinking learning and play; 5-5.7m for speech and language; 10-11.5m for relating to parents, self and others; 5-5.7m for emotions and feelings; 13-15.5m for self help and coping skills; 8.5-10m for fine motor; and 11.5-13m for gross motor. Almost everything he was more than half of his age. I started wondering where I went wrong, what did I do wrong, why me, why my child. I was going to school for Early Childhood Education and could teach other kids skills, but not my own. My child was behind and by a lot. He might have autism. Why me? I did everything that you were supposed to and nothing you were not supposed to during pregnancy and I have know people to drink and smoke and all kinds of things and their children turned out perfect to be perfect health. We had already dealt with so many health issues his first year of like I was kind of just hoping that instead of him having the delays because of autism that he was behind because of all the health issues and being born early. I honestly did not trust my ability to take care of a child with special needs. I had done all sorts of thing with children, but I was not confident in the area of Special needs. I talked to a wise friend of mine about how I was feeling a why me moment and I did not really want to be there, but just needed some venting and she shared with me a really good video that helped me a lot.

See because on top of feeling the why me and denying he had autism I also was feeling loss. Loss of my child and loss of his future. I wondered if he would graduate high school in a normal class or special ed like my father. I worried he would not go to college, get married, or be able to live on his own. I wondered if he would ever talk and why I could not just have all the regular mommy experiences. I already knew I missed out on a lot of eye gazing lovelyness when he was a baby, but I still wanted to have what every other mom gets to have. The ability to have their child grow up and make a choice on their own and not to have it taken away from them prematurely. I wanted him to choose if he stayed in high school and graduated with the hopes that he would since my parents were the first in my family to even graduate and now only a few cousins have followed suit as well. I had hopes he would choose to go to college, but would support him in any way I could if for some reason it was just not the correct fit for him. I had hopes that he would fall in love, get married, move out, have children of his own, so I too someday can be called grandma. You plan and think of all of these things normally before a child is even born. Not to mention the in between moments where you hope they will have the choice to play a sport if they wish. I know my family never had the money to allow me to do any extra activities after school. My wise friend also shared a book with me D iz for Different. By the time I had read the book I had already gone through the stages of acceptance several times over and gone back again. 

After reading the book I made the decision I was going to stay at acceptance as long as and as much as I could. I was also going to live in the here and now. Not in the past on what I might have done wrong or what I missed out on or on the future which is never guaranteed anyways. By focusing on the now and not worrying about the future or past it did several things. First, I was honoring God more: I was trusting our future to him and I had also actually accepted that even if my son was not going to be higher functioning in society that he would still be a part of God's family and in a way I dedicated his life to him. I was also able to honor him by trusting him more, it was not what I did or what I learned that has helped us get to where we are now or where we will be in the future. He is our guide.  Second, I was able to focus more on what my son is doing now, what is going on now, and the little accomplishments most parents do not give much attention to, I was able to notice and love them all. Focusing on the now has made me a better mother. 

I have always know that autism was not the end of the world; however embracing the new world was a hard and scary experience that has taken a lot of faith/trust, but embracing it has been so wonderful. I have embraced it so much now that if there was a magic pill to take away his autism, I just would not do it. To me so much of him that makes him, who he is today and which made me, who I am today is mainly thanks to his autism. Yup, I said thanks to, it has opened my eyes and changed me; It has made me a better, more patient, and more understanding person (because of course patients comes from understanding in most cases). I know that through whatever it is that Josiah will go through in life it will help to make him who he will be, both the good and bad. Also, that with me accepting him fully, autism and all and not wishing there was a magic pill, he too will be be more able to accept himself fully for who he is. I will do what I can to help him learn and to help him cope with things and to learn how to deal with the world around him, but I am not trying to change him.

Roller Coaster Week

This week has been so full of ups and downs. Monday we had to go off schedual and go to a GI apt when we would normally be swimming. This was fine in the beginning because he loved playing with the frog in the waiting room. Then waiting for the dr was not so great. He did not sit still to get weighed and was 20lbs 8oz (daddy had to hop on scale get 0ed out and then hold him). He was measured at 21.5in long. We were just thinking yay, you gained some weight. Well, the new GI who is just a PA comes in and says: well, he is failure to thrive. This was just about the first thing to come out of her mouth, other then hi nice to meet you I am so and so. She is not familiar with Josiah's weight and last time he was measure there was over 3 months ago. Well, during the time there she discussed his poop, which is normal, his energy which was apparently normal, his strength which astounded her (he was pushing her around the room while she just sat in the round wheeled dr's chair), and then she also gave us a list of "super foods". The only thing super about the foods on this list for the most part is calories. There was margarine, ice cream, heavy cream, PB, eggs, cream cheese, cheese, and yogurt of what I cam remember off the top of my head. Josiah gets PB, cream cheese, and eggs already daily. I do not feel good about fitting some of the other items into his daily eating habits or he will not eat it. Josiah normally does not eat yogurt, but one time this week I got him to eat a whole 5.3oz container of greek yogurt now that was a great thing. The GI other then getting in our face and saying his bones and brain are not going to develop at this rate and then telling us she was not trying to scare us but it was serious, she also told me that breastfeeding had no caloric value at his age and that I should just quit, go down to one time a day, then wrote on the paper for check out that I should cut him down to twice a day and only 12oz of water. The next day hubby talked to his therapists and I put a call into his ped. She very much disagreed with the failure to thrive and said he has always been slow to gain and slower lately then in the past but she would never mark him as failure to thrive and suggested we call her superior to say that her plan will not fit us. She seemed to ignore the fact that he could/will not eat certain things due to texture. She asked who diagnosed his autism and then stated that he did not have autism since he was diagnosed with PDD-NOS. She also said that gluten allergy only shows signs through a rash and nothing else is a sign of having that allergy! You would think a GI would have knowledge on allergies! The phone call to his pediatrician made me feel a bit better. His ped agreed that we could use some help with his eating, since she knows it is not behavioral for why he eats when he eats and how much he eats but probably more the lack of feeling hungry. She again put a referral to a nutritionist and trying to get us into some feeding program. The GI put into referral a swallow study. If it goes anything like last time Josiah is going to refuse the barium and he is going to have a tube put down his nose to go to his stomach. Most of the week Josiah has been a little stinker when it comes to swimming. He will go for the wall like he is supposed to figure it is too far and turn around and come back to me. He has not wanted to float and only wants to stick his head to the side to get a quick breath before continuing to swim. He also decided to do a wash machine looking move where he sticks his head up and spins around instead of just relaxing and going into float. Thursday was my last day of pottery. It was nice to get all of the items to take home, so I can get them too who I made them for or put them around the house. I made Mikey Mouse for LM's birthday, a fish for him, a heart shaped top with round container for Jason for our anniversary, a fish for his instructor, a fish for his friend's 2nd birthday, a couple of autism awareness things, a really cool water fall, and a few other things. There are some pictures after all the writing. Saturday is Josiah's friend's birthday party and then the following Sat he will have his birthday party. Monday, Josiah will be visiting Michael again to see if he he does the same things with him as he does mommy. We seen him today to give him his present. The power was out in the area and we were going to head home, but Josiah started to yell Michael, Michael and crying because before he went to sleep we had told him we were going to go see Michael and when he woke up and we were not there he was not happy. So, after getting what we needed at Walgreen's we headed that way (we were going to grab stuff at walmart, but no power).  Next week should be interesting since LM does not have therapy on Th or Fri and the pool is closed on Th. Jason and I are hoping we can find another pool to take a dip in Th otherwise we might have a melt down. Sitting with Josiah right now waiting for Jason to get off of work in a half hour (then a 45min drive home). We are singing to songs on youtube and chatting to people on FB. Hubby and I had a conversation today about the thought of becoming an ISR instructor for myself. My field of study is early childhood education already (birth through age 8-kids being taught swimming are 6m-6y) and I love children to be safe in all areas (care seat safety, water safety among many other things). When I get a job it is more than likely going to be a seasonal position with summer's off and so it might be a possibility for our family someday. Just not sure. Right now LM needs so much one on one it is not possible, but it is in the future side notes. If it does not happen it was not meant to be and not the end of the world, but if it does happen it would be nice for the families in the area to have one more instructor so more kids can learn how to swim by this amazing program.

Waterfall and bridge

Human face

Top of anniversary gift to Jason

One side

The other side

One of the Autism domes I made

Midnight

A pond for Josiah's fairy garden

Josiah's Fish

The other autism dome

Gift for Josiah's friend

Gift for Josiah's instructor

Josiah's present

Our family hand prints Josiah's on both of ours and Jason's on the left and mine on the right

Been Awhile

Busy, busy, busy

It has been awhile since I have posted. Been very very busy. The typical day is normally busy:
Mon, Wed, Fri up at 8 two hours for breakfast and getting ready to leave the house, and getting to ABA therapy which starts at 10 and ends at 12(we normally sit and wait for him to get out: daddy sleeps and mommy reads a book) then we go home eat and do any other cleaning that needs to be done. Daddy has to be to work at 3 so by 2 we leave the house for LM and I to go swimming. He normally takes about 10 min to get ready, swims for an average of 30 min and then showers/getting ready to leave is about 30 min(longer if people pound on the family restroom door because he freaks out and will not leave the shower then). Then it is a half hour walk to the bus stop, bus ride, and another 15min walk to the house. We normally are home about 4:30 and he naps on my lap(or he will not sleep) then we get dinner. Maybe some laundry put away depending on the day/if mommy has homework or anything else to get done. Tue and Th are only different from this in the fact that we get up at 7a so I can get to class by 9 and Josiah gets to his apt by 9:30 out by 11:30 and then mommy is out at 1p. Soon we will be up at 7a tue, wed, th and I will not be out until 1:30 so getting ready for swimming will be even more rushed.

Update on everything:

Yard work/itchy results

Mon I did a ton of yard work from racking up a bunch of stuff and sweeping the patio to installing a fence (with help from roommates and my father).  The neighbors had cut down a bunch of small trees along our fence line so I went along the fence line taking care of the fallen branches they could not reach from their side. Well, when they cut down these trees a not so nice thing happened. Poison ivy fell on my side of the fence as well. I grabbed it with bare hands and arms. I have had poison ivy once before when I was a child, so by tue night I started to itch and by wed morning I officially had a poison ivy rash all down my right arm and some on my left arm. At this point I thought I was having an allergic reaction to being bit by a spider or fleas(found out otherwise Friday with a trip to the doctor). I am still hoping/praying that Josiah does not react. It can take 7-15days for first time exposure to get a rash. I am taking a steroid because it is so bad the doctor said an ointment would do no good. On an even more horrible note Josiah wanted to breastfeed not to long after yard work and since soap and water does not fully clean off the poison of poison ivy, I have the rash on the underside of both of my breasts as well. ITCHY, ITCHY, ITCHY!!! Which is why I even more hope he does not get an reaction to it since it will be all over his face! Today was the second day of the steroid and it is working a little bit, have to take it for 10 days. 5 pills for two days, 4 for two, 3 for two, and so on. I did some reading that with as high of a dose I am taking he can get very very small amounts of it through my milk. We took off of swimming fri and today as well so I am not sure if it is the small amount of meds he is getting or the lack of swimming that has caused him to go insanely hyper today. now normally Josiah is really quite and clam. He could sit down and look at books all day long, but today he has been running around like a mad man, throwing things, and banging on things with toys.

Language

We have been having a lot of mimic language from him lately. It has been so wonderful. Last week we stopped by to see his swim instructor real quickly to drop off his thumb drive we borrowed and let him borrow Josiah's swim book that came in. When we left he said buh bye Micheal. Not when he was right in front of him, but when we were at a window that looks out over the pool, then again when we left through the doors of the hotel. He has been attempting to say all kinds of things from garbage truck, fire truck, tow truck, and all kinds of other things from his books that he has been really loving this week. Daily he has been getting out Around the farm by Eric Carle that has tons of animals with sounds and trucks(which is not within view so not sure who it is by(I know it is an easy flip book). He has been giving more hugs(leaning his head into people and wanting kisses when he does this). We somewhat had a conversation that consisted of Him: dada Me: dada is at work Him: papa Me: papa is sleeping him: dada me: dada is at work him: papa Me papa is sleeping...and this went on for quite a few more times. He has been requesting to eat and once even climbed up to the table himself and started to eat the food that I was trying to get him to eat earlier. He has been requesting to drink by either saying cup or aqua(we say water and he says ah wa). He has been making plenty of animal sounds and car noises as he wheels his trucks and cars around and down his slide! It has been an amazing chance since we first started his therapy at hope network. We have not even had speech in almost 5 weeks since they clashed with my class schedual and did not have any spots open and then they are now on spring break.

Here is a video with some of his language

Stolen Phone

Someone stole my phone and took a picture of themselves so I know and the cops know exactly who took it. If I do not get my phone back it will be 100 to replace it! Not what I really want to pay right now. Hubby and I have discussed turning on the phone and sending a message to it/him and then turning it back off again. The message would look something like this(with picture attached): "We know what you look like and the kroc center caught you on camera as well. It is only a matter of time before they turn over the footage of you leaving the bathroom with the phone, along with your home address and the photo I sent you. The only way to right this wrong is to return the phone to the kroc center. Did you see that picture of that boy on the front of the phone? He has a lot of health issues and there is very important medical information on the phone about him. Would you want to responsible for what might happen if we do not have the information we need? Did you not see that calendar full of appointments? They are all his. It was really wrong of you to take the phone, I am sorry that I even forgot it in the bathroom. My son was freaking out (one of his health issues is autism), he does not do well with even the littlest of changes, like me having to use the bathroom before we go swimming. We have already filed a police report, but I am sure if the phone is returned they will view it as you borrowing the phone and not stealing it. If you get rid of the phone they already have evidence you took it, so that will do you no good. "

Contests

We entered into two photo contests(both pictures of Josiah). The first we entered into was ISR that did not start until Mon but ended on Wed. The second we entered the day it began last week Sat. The ISR one we were in 4th when it ended and did not win anything. The tip toes photo contest is still going until next Sat. He was in first for almost the first week but the last few days he keeps falling between 1st-4th place and back again. Hopefully he has a good hold on first place right now with 1635 points(you can 5 star the picture for 5 points each vote), second place has 1504 and third has 1466. 


~really tired so off to bed now, just figured I would give a general quick update~

Praying Autism Away?!, Blessings, Thankfulness, Breastfeeding....and A Little On Guilt

Praying autism away?!:

I know I have had some this discussion on Facebook before, so I apologize if you have seen it on there before. I am a Christian. I do believe in miracles, but to tell me that I should take my son to a prayer room to heal him of his autism to me is inconsiderate. I have been told the staff at the nursery (both the volunteers and the actual paid staff). I have been told to take him to the healing room for his gluten allergy and my gluten allergy as well. The way I feel is I would not be allergic to wheat among the others if it was not genetically altered by....humans not God. I am just fine not eating wheat. Then when it comes to the autism. I love Josiah just the way he is. I am sure if God wants him to advance he can do so through his therapy. In many, many ways Josiah is different in a REALLY GOOD way! As challenging as it might be at times with him having autism, it makes him who he is and made me the mother I have become today. I do not see it as a curse to be healed but as a blessing. I accept Josiah for who he is, ALL of him, not just I accept you, but not your autism so I am just going to pray it away. I have accepted he has autism. Like I stated before the way that kids with autism view the world differently should be a wake up call to the rest of us. They seem to be closer to God then we are. Most special needs individuals seem to be. They are not as selfish and many other characteristics that not only make them beautiful in their own way, but usually more beautiful then we can be when the flesh has clouded our judgment/decisions/choices for life. 

Blessings:

Most parents do not appreciate the little things when it comes to their children. Things like daily smiles, hugs, eye contact, and their children just talking to them. I am thankful for every smile, every time he looks me in the eyes or anyone for that matter. I am so happy he connected with his swim instructor so nicely. That was so nice to see. 

Thankfulness:

I am also SO very thankful for our breastfeeding relationship. Not many parents who have the same issues we have/had were able to continue. I do not feel I am extended breastfeeding, but just doing what is natural and what has been done from the beginning of time. It is God designed and does not need help from man(formula). I am thankful there is formula to help babies who have no access to breast milk. I helped a couple of families by donating breast milk to them to help them get some of the much needed goodness that breast milk is.

Less then a month

The switch:

I feel so strongly about breastfeeding I even switched from a church I attended for seven years. I was asked to either cover or leave the sanctuary and at the time my son was eating every 30min and with the extended service they had there meant that he was eating 2-4times while there and if he fell asleep there was no way I was going to wake him up to return to service. I should not be force in a BOX to not be allowed to worship GOD the one who created breastfeeding just because as they put it: "I agree with you that breastfeeding is completely natural and shouldn't offend people when you do it. However, because the original sin corrupted the world, people are corrupted. Not everyone agrees about breastfeeding... you know this. The general concensus of our culture is this: Breastfeeding should be a modesty issue. If you wouldn't show someone your breasts when not breastfeeding, they shouldn't see them when you are breastfeeding." Well, because society does not agree with breastfeeding I should not do it???? Yah, society also believes getting drunk is fun....are they going to jump on that band wagon as well someday?!?! Of course when I was going through a tough time with Josiah's tongue tie I was also told to just bottle feed by the same people instead of receiving words of encouragement and love like you should from your church family. I am still hurt by this. Why, because they were like a second family for seven years of my life. They were my first church I attended for a long period of time. They were there when I got married (the pastor was the one who married us) and Josiah's baby shower. Though I was obviously not fully accepted and was doing nothing wrong/was not even doing anything sinful for the reason why I was not accepted. Heck, even if I was sinning, I do not think that pushing me away and not letting me in church would be the answer! Church is for sinners not perfect porcelain dolls! These kinds of views is the reason most people do not breastfeed for that long. The rate in America is so sad. It is only in America that breasts are viewed as such a sexual thing. No where else is it as big of an issues to breastfeed in public. Even in countries where a women covers herself head to toe besides her eyes for modesty can breastfeed in public! 

10 Months

TWO YEARS!! 

14 months-Used in breastfeeding calendar

14 Months

 July nine  will mark two years of breastfeeding for us, but I am thankful for every feeding every day and I am so happy we continued through tongue tie, lip tie (and all the issues that came with having both those issues), getting both clipped, dairy issues, reflux, anemia, premature birth, autism. Knowing how great that breastfeeding is for children with autism makes me even more thankful for the relationship. He is not very lovey/cuddly, but we have nursing for now. Even if it lacks in that eye gazing wonderfulness I see other mom's experience I am still very grateful for it. Even if he does not smile up at me, even though when he can not sleep at night he nurses half the night until I feel sore I am still grateful for that time we get together and that he getting good stuff for his brain. We have chosen to do baby led weaning and I would not change that decision or the decision to breastfeed and continue to breastfeed for anything.

22 Months

A must watch movie

Books I have enjoyed reading that have helped after finding out my son has autism:

D Iz for Different
 
This one describes a lot of stuff for any special needs parent goes through, well for any parent for that matter. There are a lot of good things even non-parents can pick up from this book as well. One of the quotes that described exactly what I went through as well:

"I was in a fog, a stunned state of disbelief. What happened here? I had already established my hopes and dreams for this beautiful young lady before she even breathed her first breath of air, and now they were shattered. All of a sudden I felt a heavy burden, as any parent would – how do I make it all better? Being a parent is already the toughest job in the world; let’s add another layer on top of that. A layer filled with the unknown- continual visits to doctors, specialists and therapists; skyrocketing medical bills; insurance adventures; IEP (Individualized Education Plan) meetings; heart wrenching worries, labels and surprises galore. During the days and months of this fog, there were more questions: Why? Why Me?, Why Her?, Why Us?".
Downs, Camilla (2013-04-26). D iz for Different: One Woman's Journey to Acceptance (Kindle Locations 325-333). Turning Views. Kindle Edition.

3500: An Autistic Boy's Ten-Year Romance with Snow White

This one I am still reading. I loved this one because the child was so much more happy and verbal at Disney World. I have found Josiah's Disney World and it is swimming. Although his son was not always happy with Disney World just like Josiah has been completely thrown off with changes in swimming, it is still the best thing for them at the time.  

Guilt:

I seen a seen a posted on one of the pages I am following on Facebook. It describes what far so many parents with children with special needs in general feel.  With autism there are so many things that people say "cause" autism like vaccines for instance. I have heard so many people beat themselves up for giving their kid vaccines and now they have autism. They are so full of guilt they can not even be there for their child because they feel they did it to them, they caused it. I did vaccinate Josiah, do I feel if gave him autism? Absolutely not! First off from the time he was born he hardly gave eye contact and even for the kids who do not show obvious signs until they are two I still do not feel vaccines caused it. They brain goes through so many changes around that age and that is just when it decides to show its self more. Josiah is coming up on two and even though we have been seeing progress I have also notice somethings that he did not do before. Like toe walking at times and heel walking too(seriously do not know if some kids with autism do that). I hope and pray he does not regress when he turns two, but if he did then we will just deal with it all then. I am not going to ignore the present worrying about the future or feeling guilty about my past. I really do wish that more parents would not have to feel so guilty about their child's autism. We are so lucky that our insurance covers all the therapy other than the copay which is still twenty a day, five days a week, with fifty-two weeks in a year that is $5,200 just in therapy a year, which is less then what we were thinking. Then discovering that swimming is his "snow white" is another 70 a month, until we find out if we qualify for a scholarship. We are paid up until the end of August; thankfully, with a summer pass. I can see how without insurance a parent would feel guilt on the amount of therapy they can afford. Not spending enough time with my husband was a big one for me. I even had people tell me our relationship was not healthy because of the amount of time we spent in bed together(my thought was we had a healthy relationship before marriage without sex, why does  marriage need LOTS of sex to be considered healthy), due to complications for birth that caused great pain, hubby working second shift and just plain tired from the every day stress of a child with special needs (this has gotten a lot better with Josiah swimming!). Well, we are still together and he is more than understanding on his end, he knows that being a good Christian leader is doing what is best for the family as a whole and not just what is best for him(this is what I love about my husband so much). Oh and do not get me wrong on thinking that I do not believe a marriage does not need sex. I know God designed if for marriage. 80% of marriages with a child with autism end in divorce. We promised each other forever and we would like to keep it that way. Yes, we have had the discussion about that high number and we vowed again to each other and God to be that 20% Mark 10:7-8; "For this reason a man will leave his father and mother and be united to his wife, and the two will become one flesh.' So they are no longer two, but one flesh"!

32 Months-Hubby was taking a while to take picture so caught a half smile

Swimming Take Two/Some Background

Fairy day 21months

 Plans for the day/weekend:

We are able to go swimming again today. We have to wait until five when open swim starts. Until June 9 is time for when he can swim will very a little bit because open swim varies. The pool doea have toddler swim times, but they run they entire time he is in therapy. Hopefully he does fine with the change in time for the time being. Tomorrow we watch a couple of older kids we have not watched in a few months so hoping he does great with that still as well. We also will be going swimming tomorrow as well.

*UPDATE*

How swimming went today:

We went swimming and it was not too bad. He was still gripping so tight and not wanting me to put him down. Though he enjoyed the little water slide. One mother was shocked when she seen him go down the slide. The slide is in about a foot of water and when he got down he plopped into float right away. We also did it in the middle of the pool while people cooed over it in amazement. He swam to the wall and got my hand a couple of times(I did not back up to far or he would have gone straight into float), oh and he went for the stairs, but decided that floating would be better. He felt the stairs with his hand when they were under him but he did not flip, so I encouraged him a little by flipping him into swim again using his shoulders. He sadly got cold really quickly and then was not having any of it. We ended with a nice warm shower, nursing and then got to play in the shower a little while mommy was getting dressed. I LOVE that they had family changing/shower rooms. Made it easier to get ready without having to worry about him running off while I was trying to get dressed. Oh and discovered that Josiah is terrified of automatic paper towel dispensers. He could care less about the toilets, but the paper towel dispenser scared him...

Some background:

Since I am sitting waiting at LM`s appointment and do not want to read my book (The Vampire Armand by Anne Rice), I will fill in some summarized background knowledge on us. I guess I will start at the beginning of not my life, but the start of our little family.

How Jason and I met:

Prom in 2007

I met Jason, my  husband when I was almost 17. I met him through his brother and sister-in-law before they were married (I met both of them at a weekend long Christian event for teens, that we were all volunteering at). I had shortly before I met him made a promise between God and myself not to date for an entire year since I had just got out of an abusive relationship (I honestly think that is the first time I have used that term to describe it before, I have called it a bad relationship,  but not abuse like it truly was), that lasted five years. We would chat online for hours everyday with a couple of other friends or just the two of us. The first time we met was at 131 raceway, watching drag races. We started dating February 18th. I was the first girl Jason had dated and I really wished I could erase my past, but I learned I couldn't and that my past is what helped to mold me into who I am today. God even used the threat on my life from my ex, because of the threat I went the weekend event even when I wasn't feeling well and I have already explained the rest.

Started dating/engagement:

One of our first dates together was my Junior prom, so we have the pictures from the event, to help us remember the moment, forever.  Fast forward eighteen months into the relationship we got engaged,  just before I started freshman year of collage. It was August eighteenth, at a park during a picnic lunch, with subs and cherries.  I can till remember it like it was yesterday.  We got engaged even though we knew it wouldn't be until sometime after I turned twenty-one for our wedding date because of another promise I made to myself and God before we met. During our engagement we went through some really tough times but even through it all we were still together.

The wedding:

June 18, 2010 was the date we planned to get married in a park by our  pastor, with close friends and family.  Two days before the park flooded so the location was switched to our church.  With help from some church members we set up the wedding in the new location.  We had a beautiful wedding with pictures and video. For our honeymoon we went to  Grand Haven for a fountain light show and time at the beach. Then farther north for more beach and walking.

Loss and pregnancy:

Sometime in July we made the decision to expand our family.  After the loss of a pregnancy,  we were pregnant again the due date was set for August. The pregnancy was uneventful other then a bad case of the flu around thirteen weeks in. June seven came around and I had three hours of contractions. Almost two weeks ago Josiah(then known as little monkey)  had dropped completely into position,  so much so that we couldn't get an accurate ultrasound measurement or picture of his head. The OB made the decision not to check for dilation and said see you in two weeks (needless to say he was born three days before the appointment).

33weeks along

Here comes Josiah:

Waiting to see how far dilated I was at the hospital

July 8 I started contractions before the kids I was babysitting at the time got picked up, I thought he was just putting pressure on me because it felt fine when swaying.  We went food shopping.  We got done and went to get my mom from a store. I couldn't stand still because of the pressure.  I talked with my mom how I never said I wanted him to come and even told him he was not allowed to come until thirty-seven weeks or later since thirty-six and earlier is considered premature birth. Then I joked that if he kept up whatever he was doing that I wouldn't know how I could make it to forty weeks. Well, by midnight that night I came to the conclusion that it just might be labor I was in. We waited and timed and watched. Decided around 1 in the morning to go in to the hospital.  I was all smiles because the pressure had stopped when I got busy packing.  We almost stayed home because it stopped.  When we got there they took their time, I mean I didn't look to be in labor so they thought it was false labor and told me so. They hooked me up and discovered I was having contractions and again stated I was probably in early labor due to the grin still on my face. Well when they decided to check me I was seven cm. Then took samples of blood and urine to check for possible reasons for early labor (nothing was ever found). I was checked again and was eight and a half cm. I was checked into a room, Jason got the bags and my birth team started to show up. My water was broke at 7 since labor had slowed, but I was too far to be sent home. Things progressed rather quickly from there. With only three pushes my beautiful, small baby boy was born, by a natural, medication free birth. He was 5lbs 12oz and 18.5in long. He got a 9-10 apgar  score and had no need for the nicu. The birth was perfect up until the OB pulled on the placenta causing my bag of waters not to come out like God designed. Then he made the decision to scrape me out(like a D and C, but I was FULLY awake and no pain relief) while everyone cooed over LM, so no focal point or other natural help. The affects of that act on our sex life lasted nearly TWO years. After some issues we figured out breast feeding (He was to be the only one to latch and if I helped he would unlatch and do it himself all by himself). Three days after birth we went home.

The first year:

Ultra sound at 1 month old

Build a bear firefighter costume-almost 3months

Everything went rather smoothly the first month, but then I started to notice the amount of throw up he had and the force at which he threw up was unusual. We went into the pediatrician and she sent us to an  urgent ultra sound to see if he had pyloric stenosis (a stomach condition some babies get, that requires immediate surgery), we were thanking God for sure when we found out it was not that. We ended up going on a dairy free diet which helped a ton. By six months I got off of the dairy free diet. A little before this time Josiah began eating every half hour and was really lethargic(not moving that much when awake). After several visits to the pediatrician and a lactation consultant and then finally seeing our pediatrician we were sent to an ear, nose and throat pediatrician to check for tongue tie. It turned out that he had one and a lip tie as well. They were both cut in office at six months. His eating changed a little and he became less lethargic. He still had some eating issues and by seven months we started to see a oral therapist. By nine months they discovered he was extremely anemic and he was put on a high dose of iron for a little while which he is still on iron in a multi-vitamin plus iron to this day. Nine months is also when we discovered that he was having bad acid reflux as well and thought it was strange he did not protest about it other then in eating small frequent meals. He was started on prevacid after trying two other medicines that did not work(he still takes this to this day as well). after fixing both of these problems Josiah started to crawl. At eleven months Josiah had his hypospadias surgery and began his life of climbing on everything. Something we knew was coming since he was born. Hypospadias is a defect to the penis. It causes it to be crooked sometimes, the hole to be in the wrong place, and a hooded foreskin that can be fixed(found this out after surgery) in most cases if the parents wish to(in our case the urologist said it was not fixable, so he did not even give us that option).

After surgery-11months

Eating his birthday cupcake

 

 

 

 

 

 

 

 

 

 

 

The second year:

 

Showing off  his cloth-12m

Sitting in a wood shoe-14m

Halloween(zookeeper giraffe)-15moths

In the beginning of the second year I joked with Josiah that he was not allowed to have anything wrong for the next year since we had gone through so many different things in the first year. This hopeful thinking of course would not be the case, but we love him so much either way. By thirteen months I was really starting to be concerned about little things, but could not put my finger on what could be the cause. When he was fifteen months and still not walking or talking/babbling I got a hold of an early on program. By the time they came out he started to walk at sixteen almost seventeen months and they came to see us at eighteen months. We started speech once a week. We talked to them about autism and they said they do not do anything about looking into it until a child is in preschool. I was not happy with this answer, since I know how much a child learns in the first three years of life and that it is better to catch things early (working on a bachelors of early childhood education and I am so close to being done!). When we went to the eighteen month appointment I brought up autism which the pediatrician was prepared for as the m chat gets filled out at that appointment. She too was very concerned about autism and recommended us to BRAINS which did not take our insurance. I discovered hope network and brought it up with her, she was actually going to recommend us to them that day too. At twenty one months we started swimming, five days a week for ten minutes, which was really awesome because it just about stopped all of his tantrums and climbing. We also went to the evaluation at hope network then as well. We were asked a ton of questions left the room for five minutes and then came back to a rearranged room. Josiah just about fully shut down because of this. after prompting  different behaviors that they were unable to get we left the room again for five minutes. The next time they took just him back and he cried for nearly an hour. He was diagnosed with PDD-NOS (pervasive developmental disorder-not otherwise specified), which is on the autism spectrum. PDD-NOS is not less or more sever then regular autism. He was given this diagnoses because he does not have repetitive behaviors. Two weeks later after insurance approval he started therapy there at five days a week for two hours. He is now 22 months and done with swimming lessons, but still has speech and ABA therapy.

Climbing on window 20months

Playing at Java Gym-18months

20months