My son and an better ultra sound appointment

Well my son had a bad day at school yesterday he was way out of control he was poking kids tripping them etc. Today was my grandma's 90th birthday it was good nice to see some family and my sister Sharyl. 
Had another ultra sound today saw Julie A. Gainer, DO at UVRMC she is a really nice lady explained things very well gave me options and some things I could expect. Found out the NICU could do several things in the room for Tianna so she could be with us as much as possible. I really liked her Ultrasound technician too she was very well trained and so pleasant. Tianna seems to be processing amniotic fluid for now, kidneys, bladder and stomach are working. Heart is good so that is a good thing. She kicks up a storm and has her hands in her face alot. Her head had not enlarged due to water on the brain yet. I feel a lot less stressed.

A bad day

Well its already been one of those days. Sigh! My baby puked first thing this morning. Then My son did not want to go to school so my oldest had to drag him kicking and screaming into school the looks from the other parents where great. The teacher promptly sent him to the principals office who then sent him with the counselor. Then baby puked again all over herself and the car seat. Then the stupid van driver window would not go up so I got to drive 30 minutes home with the window down on the freeway. What a nice hair doo. Then had to get baby cleaned up my back is killing me.

It was my youngest birthday last week she is now 3 WOW where does time go? I went to another doctor and he prescribed me Methylprosinone pack it seems to be helping some but he still did not want me to sit. I talked to him about my baby as he is a long time friend of the family. He said I have to decide how much intervention I want but to give Tianna the best chance for survival she should be born in a hospital. If I just want comfort care I can go ahead and home birth (he does think I am nuts to birth at home but he also knows its a thing he called it like a religion :)) I posted in my holoprosencephaly group trying to figure out what others have done. I believe he is probably right I just dont know how I am going to convince myself to do it. So many things I need I cant get at a hospital I dont want to end up with so many complications because doctors only show up the last 10 minutes. I so need my water I just dont know how to get around it. Well at least I have a bit of time to try to figure something out.

Families of HoPE and Dentistry in Autism

My Package came from Families for HoPE it had a blanket and some indepth information on Holoprosencephaly. I found it helpful I wish there was a master list of various physicians who have dealt with babies with Tianna's Condition in the state even would be nice. Currently I am discovering most have never had contact with this condition. It is very frustrating to say the least. We had a dental appointment for the kids this morning just cleanings.
My son is always the most difficult his autism hits full gear even trying to get the xrays. We struggled a bit at first then I told him I would buy him a lego if he was good I was desperate and he was biting. I know some would think I was just giving in but sometimes a little bribery can save a whole lot of heartache. The rest of his appointment was the best we have ever had he did not even fight the dentist for his exam and his cleaning went so well. He tends to fixate on things and his current is legos. I rarely use bribery but in this case I am glad I tried it. Unfortunately he does have a long memory so come next time he will want to be bribed again sigh! At least it is only every 6 months.
My kids had a run fund raiser for the school they attend today I was very surprised to find that my 6th grader ran 54 laps and my 2nd and kinder ran 45 laps each maybe they will fall asleep easily tonight  

Night Terrors

So I have this weird thing that happens to me when I am pregnant. I wake up about 50% of the time in the middle of the night freezing and shivering uncontrollably. I think it seriously might be sleep apnea and it seems to get worse the bigger I get then goes away after I give birth. I have been told I have sleep apnea when I get sedation dentistry. The thing that worries me is if I am keeping my unborn Tianna alive and she cant function if I dont will I kill her with these episodes? I had a double episode last night which is unusual for me and stressed till about 2pm today when I finally felt Tianna move I was starting to freak out that she was gone.

On another note my oldest is 16 has been for two whole days and she is already at a dance. WOW, I warned her that the boys would crawl out of the woodwork to take her out the minute she turned 16 but she thought I was nuts. I hope she has fun though she needs a bit of cheer right now since she is a bit upset about baby Tianna. My second seems to have buried herself in books and movies to cope. My third is fine she is still sad but coping so much better. My fourth is meltdown city she freaks out about everything I dont think she is doing well but not sure how to reach her. I tried to tell my 5 year old son the other day about Tianna but he did not get it and still thinks he will just play with her when she comes out. It made me sad that I knew this was not likely to happen but cant get him to understand.

Alobar Holoprosencephaly

Well I will soon be the mommy of 7 I am due in August. This was a planned pregnancy we knew there was another. Now let me tell you that after having 6 I still had no idea that your life could change in a moment from one ultra sound. I went to my 20 week ultra sound on March 18th and everything looked good right on track till we hit the head. It measured only 17.5 weeks and the ultra sound tech said I need to get a doctors opinion. After she left I felt all will be as it should be this does not always mean how we want but I felt a bit of peace. He comes in and said that the brain looked abnormal but he did not have the experience to know what it meant and I would need to see a specialist. How absolutely terrifying and heartbreaking. I had no idea all the things that can go wrong I searched the internet and the results did not help. I was thinking it might be downs I could work with that. So the midwife said she would find me someone to see me this week but no one in the valley was available till April 2nd so she searched in salt lake and found someone to take me the next day.
So I messaged my husband and asked him to get the next day off to go with me as I could not face this alone. He managed it thank goodness so after 24 hours of pure torture we went to see the specialist the ultra sound went about the same and when the doctor came in he went over the results. The result was worse my baby girl has Alobar Holoprosendephaly a rare condition where the brain does not form properly and is the most severe of HPE. Her eyes do appear close set and the nose appears to have 2 nostrils but it might be formed weird. Her mouth and lips are fine. Her body and organs all appear fine and are on track. It did seem her brain was missing about a third by the right eye we were in such shock he did not really go over the specifics.
I asked what our options were and there are not many I could terminate by getting dilated and giving birth, I could do the D&E where they essentially cut the baby up and suck it out. Or I could attempt to go to term and give birth. We opted for going to term and giving birth due to religious beliefs. This is still a hard thing to come to terms with I will have people who ask me how the baby is so emotionally this is going to be so trying.  The genetic counselor then talked to us we could do Amniocentesis which would tell us what chromosome it was attached to but it does not appear to be a hereditary thing so this probably would not be useful. They could do an autopsy after baby dies but would have to cremate as they make a mess when they do little babies. They could do a blood test for 2 chromosomes which we decided to do but is unlikely. She also put me in touch with a Utah Group called Angel Watch. The group coordinator Carolyn got in touch with me already and explained the many things they offer a family that has been given a fatal diagnoses no matter if you terminate or carry to term.
I had panic attacks for 2 days I still have uncontrollable weeping. I am sad, depressed a bit, angry, and then at times I am at peace.  We came home and had to tell our parents this was such a hard development to share with them.
The next thing was trying to tell the children how do you share something like this and help children on the spectrum really understand. We decided to tell the oldest 16 when we picked her up from her first performance as she tends to mope. However she has to hold it together during a performance so it gives her subconscious time to mull it over so she can deal with it. This seems to have worked well other then a loss of appetite she seems ok. Our next 3 ages 13, 11, and 8 we told the next day after finding some books to help us. The 13 year old internalizes like mad but we think she gets it our 11 year old is neuro typical and cried alot but has come to terms. Our 8 year old is a little bit more difficult I dont think she really gets it and I dont know what further to do to help her. Our son age 5 and our 2 year old girl we have not told I really have no idea how to get the point accross to him, he is our most autistic child and is frequently in his own world. We feel that the 2 year old is not going to get it at this point but I am praying for some inspiration to help them both.

Kindergarten issues with Autism

Well my son is adjusting better but has had to be switched to a different schedule then another child due to personality issues. He is having good success in this split school model where he spends first half of the day in Sped and second half in half day kindergarten. He loves math and art along with his teachers. We still can not get him to potty train but have not had a stinky accident in 4 weeks yeah!!! His faithful sister goes every day to take him to the bathroom and make him change his pants if he is to wet bless her caring soul.

The challenges of starting kindergarten with Autism

Well big surprise school started off crazy. My son was registered for all day kindergarten as I decided I did not want to have to travel to and from the school so much. I also did not want him to be half day and try to squeeze all his ot, social, and other sped services. He already struggles to learn how will he keep up if he misses half the stuff. Well big surprise he did not do so well going all day in the regular classroom so we decided to try him half day kindergarten and half day self contained where he can get all his sped services. This seems to be working for him as he melts down by lunch other then he bit a kid the other day not a real bite just a nibble really lol. When I asked him why he said he was looking at me and blocking the slide. Sigh! do kids just have this homing beacon for kids that are different and pick on them? I volunteered to drive for the senses field trip for my sons class. It was fun the teacher only assigned me my son and another sped boy he is a lot like my son she was worried to do so but I told her I was used to them so it would work fine.

LOL I always wished my son had a twin as then he would have a friend I am not so sure now they were fun to watch and played well till they did not want to do the same thing. Then you have a problem as one goes one way and one goes the other they do not listen well so if one wanders off you cant leave the other as they are not like other kids you never know what they are going to do. So you have to get the one and chase the other and quickly!

It reminded me of when my third daughter was 3 and my second was 5 she would just wander away with whatever had her attention. so I would have to uproot the 3 year old to chase the 5 year old and try to carry the baby. It was quite the challenge many mothers do not understand why I do not take my kids places much well there are several reasons: I have back issues, they tend to melt down, they don't listen well so it makes it difficult to divide yourself to get in each child's face to make sure they understood you.

Well back to kindergarten, my son is really good at math big surprise. However you have to read everything to him. He struggles to stay on the same task for very long. He works better if he has a fidget and a reward that is tangible he does not seem to get implied rewards. He can not handle the noise of the lunchroom. For fidgets he likes those party size playdough and those little balls with spaghetti strips coming off in center like these http://www.orientaltrading.com/halloween-porcupine-balls-a2-25_3355.fltr?prodCatId=551312 my oldest likes a good old stress ball or a worm like this http://www.orientaltrading.com/magic-worms-a2-16_1212.fltr I like these cause none of them are to expensive to replace if lost or ruined :)

A Day in the Atypical boys life

Well I thought I would share a typical day in my 5 year old sons life:

Well my son stays up late like most boys on the spectrum he does not sleep well this has been hard on the hubby and I but mostly me as my husband could sleep through a tornado!

So this said he is generally up by 10-11am, now I know I should wake him earlier we have tried that for a couple weeks straight but all that happens is I get even less sleep as he still stays up late.

He generally does not like to eat first thing but he does like to turn on the tv and watch rescue bots on netflix. I usually just bring him a bowl of dry cereal and he will eat on it then if he is in the mood he will come get milk. After one episode I have him go change his pull up and get dressed. He then finishes eating rarely will he just sit and eat he is constantly getting up. Then he watches another episode well he really does not watch it all he by now is awake enough to play with his cars with the movie running in the background.

If I do not keep my eye on him and have to do something I will walk in to find a box of cereal or crackers scattered on the floor and him mashing it with his cars his favorite activity since he was 18 months. I have tried everything short of buying locking cupboards to keep him out of the cereal it just was not worth it when I found him climbing over the counter and stretching to reach the top of the fridge just to get the cereal down. I have decided now that I am more familiar with autistic behaviors this is probably one of his stims he finds comfort in it. So now I deliberately leave a smaller portion of cereal around so maybe he wont use a whole box.

I have learned if nothing else from being the mom to children on the spectrum you have to pick your battles when possible. If I spend all the time trying to get them to conform to the same expectations for neuro typical children I would have a whole day and night of meltdowns and I am sorry but my sanity is important too. So I do expect certain things from my children mainly the really yucky things are unacceptable and sure to set me off lol like playing with your poop YUCK! Luckily I have not had much problem in this department till I got the youngest girl she does not like poopy diapers so she will play in them if you dont change them right away UGH!

Well back to the boy he as been pretty good in this department and thank goodness finally got trained to at least poop in the toilet. It has been two months since I had to change his poopy pants YEAH!!! He is still working on the urinating in toilet I really feel he just can not tell when he as to pee.

So after he plays with cars he generally wants to play in the sand box with cars even more so out he goes, usually with baby sister in tow, it kinda sucks in winter as I have no place to let him go play while I do some cleaning. I go check on him tons as it does not take him long to get into something I usually will go fold some laundry outside or sit on the deck and read. Usually after an hour or so he wants a drink or something and gets distracted with something inside. I usually have him do ABC Mouse while I make him some lunch and less he wants to help me cook it.

Then he usually turns on another movie like bob the builder and plays with cars again I try to get him to do a puzzle or something new sometimes he will sometimes he wont depends on his mood. We usually end up back outside I try to get him to notice something new in nature daily trying to get him interested in his surroundings not just those cars.

I usually go get the girls about this time and then my life gets to crazy to do much with him and he will usually watch a movie while I try to get the girls to do their chores and homework while I start dinner.

The kids usually play a game together including the boy or watch a movie then they get ready for bed have a story and go to bed except for the boy. He generally is up playing the only way we can get him to go to sleep is to hold him while we watch a movie and it has to be something boring. You can read to him and put him to bed and guarantee he is up playing with cars or doing whatever. I have put him to bed thought he was out go to bed myself only to be awakened by him getting into the fridge. Generally he is up till around 2am when you can finally bore him to death with music to get him to sleep.