Well after you get over the shock a bit and the grief you get to figure out how to tell others especially extended family you dont want them to be blindsided. Also you have to consider the kids your kids ages the cousins as your kids will need someone to talk to other then you. We decided to write an email I could not tell them in person and get it out. We decided to tell them within the first week after we had told our children. I happen to have two sister in laws and a nephew all due with there first babies within a month of mine. This will make it a bit difficult as they will have baby showers in the coming months and I will have a constant reminder of what my child would be like after she passes. I know I can do this because I am strong enough to face this challenge with heavenly fathers help, to much is at stake to fail this test. In the email I told them the condition how we were doing and that we did not want to be excluded because it might get uncomfortable. We might cry a bit but just ignore the tears and keep going we will be ok. We did not want the family to have to walk around on eggshells around us when they should be enjoying their first child experience. About half responded to our email right away the others did not know how to respond or what to say. They still love us they just needed more process time most have responded by now most in person to let us know they are there for us and feel our grief but did not know what to say.
I also think you need support you have got to have someone to turn to when the day threatens to overwhelm you with grief or sadness. For some this is a religious leader for others its a good friend and even if they dont truly understand at least they can listen. Also what your kids carefully they dont always want to share how difficult a time they are having especially the teens. In our state we have a wonderful program called angel watch they provide various services for grieving families of children who pass away under age 1. We are set up for our first appointment so they can help us get some counseling and decide what we want for Tianna's birth. We also have our followup ultra sound this week and have made a huge list of questions we would like answered we just feel like the doctors tend to just give you doom and gloom instead of educating you on all the possibilities. We would like a MRI to see better what the brain is doing as it is very difficult to tell on ultra sounds. We need to know what areas are affected since her body looks fine. What it means since the test for trisomy 13 and 18 came back negative does this change her chances? What interventions do we consider? how many heroic measures do we do? Where do you draw the line between suffering and life?
Sunday, March 30, 2014
Friday, March 28, 2014
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.
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.
Tuesday, March 25, 2014
How do you live with it?
Well its been a few days since we found out about our daughter having Alobar Holoprosencephaly, who we have decided to name Tianna Daniella. My husband is so doting he knows this is hard for him but especially hard for me. He has not really tried to feel our previous babies move this early before but he sure tries with this one. I really think she knows he is there as she kicks like mad when he starts talking by me. However she does not kick as much when he holds my belly.
I have so many questions about this condition and have been researching it seems like its hard to know which children will live for what amount of time. There does not seem to be any rhyme or reason to it. I have had more moments of peace then freaking out as the days wear on but I also have times of deep sadness. I think I will have some panic moments as I get closer to birth but hope the peace that can be there is what helps me through. I have pondered things I might want for our birth but I have not come to terms with anything specifically as I have to many unanswered questions. I have decided to try to get a fetal MRI I need more input.
We have discussed burial ideas but this also is so difficult to come to terms with I dont want to be planing a funeral now. However I really dont think I can do it after Tianna is born if she lives but a short while. I feel the need to be prepared for more then one outcome to help limit the fall out if the outcome is poor. It does seem to be morbid to have to be considering my own burial thoughts at my young age. We feel we would like to be buried where Tianna is so we now have the need to buy plots for us.
I have been trying to have hope this is very difficult when so much is unknown. My husband and I have gained some more hope as we joined a facebook group for kids with our condition, HPEandfamiliesforhope there are many kids with insurmountable odds that have lived for many months or years. However there are many that live but a short time as well.
I have so many questions about this condition and have been researching it seems like its hard to know which children will live for what amount of time. There does not seem to be any rhyme or reason to it. I have had more moments of peace then freaking out as the days wear on but I also have times of deep sadness. I think I will have some panic moments as I get closer to birth but hope the peace that can be there is what helps me through. I have pondered things I might want for our birth but I have not come to terms with anything specifically as I have to many unanswered questions. I have decided to try to get a fetal MRI I need more input.
We have discussed burial ideas but this also is so difficult to come to terms with I dont want to be planing a funeral now. However I really dont think I can do it after Tianna is born if she lives but a short while. I feel the need to be prepared for more then one outcome to help limit the fall out if the outcome is poor. It does seem to be morbid to have to be considering my own burial thoughts at my young age. We feel we would like to be buried where Tianna is so we now have the need to buy plots for us.
I have been trying to have hope this is very difficult when so much is unknown. My husband and I have gained some more hope as we joined a facebook group for kids with our condition, HPEandfamiliesforhope there are many kids with insurmountable odds that have lived for many months or years. However there are many that live but a short time as well.
Sunday, March 23, 2014
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.
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.
Thursday, January 23, 2014
Another on the Spectrum And Driving
Well I recently came from another IEP meeting where another of my girls is being helped for Autism and ADD after much testing and a Psychologist evaluation. I think I might just melt down! lol, works for them I should be allowed once a year right? Well that gives me 4 confirmed children on the spectrum out of 6. Well I guess I should be grateful that 3/4 of them are aspies. I dont know if it really makes a ton of difference as they all melt down and the latest child also has sensory disorders so you never know what is going to set her off. I however am fairly certain my youngest is also an aspie but she flaps and repeats which my others have not they do call it an puzzle for a reason :)
My oldest Aspie has been having alot of anxiety and depression lately she tries the hardest to fit in with her peers then seems to come home and shut down. School is getting to be alot for her to keep up with halfway through 11th grade. I hope she can keep it together till high school graduation but the emotional toll is what I worry about. She also has got a learners permit and is driving AHHHHH! lol just kidding she is actually pretty good.
My second also an Aspie struggles with OCD behaviors and anxiety. We have been using a stress ball and this seems to have limited her finger chewing. She has also adjusted to life as a 7th grader to some degree so she is less anxious. She also comes home and is very tired just needs to unwind.
My third is neuro typical and seems to do well she does struggle being in a family full of Autism and trying to keep her siblings focused at times.
My fourth is the newly diagnosed Aspie mentioned above school is a huge challenge for her more then the others as she is more distracted. She has been in Dual immersion and struggling to keep up with the double homework I am not sure how long she can keep it up. She is very good at spanish and actually struggles with english so I am unsure what the best move will be for her.
Ahh My fifth a son he has adjusted well to kindergarten however his latest is to tell me he is too tired to go to school. He got an ear infection and the flu and just does not seem to have bounce back very well its been 3 weeks so I am waiting to see they say flu can linger for 6 weeks. I actually had to carry him into school today and I have not had that ever. He discovered a lego book at the orthodontist office the other day and had to have one now he cant wait to get home and look it over again and again.
Last but not least is my flapper she has a huge vocabulary and speaks well like my oldest did. However when she gets upset she flaps her hands and can not talk to you its like her brain is misfiring. She also at times like when she wants something she repeats it over and over and over like 4 times. Even if you acknowledge that you heard her she cant stop.
Well such is the challenge of my husbands and my life. I love my kids and try daily to met their various needs I just hope that with divine help we can help them succeed to the best of their abilities.
My oldest Aspie has been having alot of anxiety and depression lately she tries the hardest to fit in with her peers then seems to come home and shut down. School is getting to be alot for her to keep up with halfway through 11th grade. I hope she can keep it together till high school graduation but the emotional toll is what I worry about. She also has got a learners permit and is driving AHHHHH! lol just kidding she is actually pretty good.
My second also an Aspie struggles with OCD behaviors and anxiety. We have been using a stress ball and this seems to have limited her finger chewing. She has also adjusted to life as a 7th grader to some degree so she is less anxious. She also comes home and is very tired just needs to unwind.
My third is neuro typical and seems to do well she does struggle being in a family full of Autism and trying to keep her siblings focused at times.
My fourth is the newly diagnosed Aspie mentioned above school is a huge challenge for her more then the others as she is more distracted. She has been in Dual immersion and struggling to keep up with the double homework I am not sure how long she can keep it up. She is very good at spanish and actually struggles with english so I am unsure what the best move will be for her.
Ahh My fifth a son he has adjusted well to kindergarten however his latest is to tell me he is too tired to go to school. He got an ear infection and the flu and just does not seem to have bounce back very well its been 3 weeks so I am waiting to see they say flu can linger for 6 weeks. I actually had to carry him into school today and I have not had that ever. He discovered a lego book at the orthodontist office the other day and had to have one now he cant wait to get home and look it over again and again.
Last but not least is my flapper she has a huge vocabulary and speaks well like my oldest did. However when she gets upset she flaps her hands and can not talk to you its like her brain is misfiring. She also at times like when she wants something she repeats it over and over and over like 4 times. Even if you acknowledge that you heard her she cant stop.
Well such is the challenge of my husbands and my life. I love my kids and try daily to met their various needs I just hope that with divine help we can help them succeed to the best of their abilities.
Monday, December 30, 2013
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.
Monday, September 23, 2013
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 :)
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 :)
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