Had my oldest (16) iep today she is very smart and gifted. They did not really find a specific learning disability which is what she has always qualified for under english but she has learned how to adapt to this so it came out high this time for the first time since 6th grade she matches her IQ and other learning with ability. This was great I was glad we had pushed the Asperger testing last year as that is now what they qualified her for( well ASD) since her grades are not showing the same results as the tests. Her anxiety and depression has kicked into high gear from her aspergers and her disability that she normally has is still there a bit. Her written expression was the only thing on age level. The rest are clear into 21 years plus but most into her 30's. I wish I could help her get past her issues and tap that potential but alas you cant push to much or they stress. However she gets more even every year so maybe one day she will be able to tap into all that brain power and use it to the max :)
I guess the point of this blurb is I am glad she is getting better on the test but I currently feel guilty that I had not a clue that she had aspergers. I wonder if I had pushed and got her help earlier if we could have limited the impact it is having on her schooling and emotional life.
Am I the only one who feels this way? I knew she was gifted from the age of like 3 but also knew at about 2nd grade that something was not clicking for her. I guess its always the hardest with the oldest they tend to be the guinea pig so to speak.
Showing posts with label Aspie. Show all posts
Showing posts with label Aspie. Show all posts
Friday, May 16, 2014
Sunday, May 11, 2014
Pondering Tianna's Condition and a house of kids on Spectrum
Well Tianna still seems to be doing well she is a very strong kicker. She also has been getting hickups lately I wonder what she thinks about when she gets them. I wonder if they scare her. I wonder if because she is special God lets her see inside the womb and out. I wish she would just come get in my brain and let me know what choices I should make for her. I have 6 weeks till my next ultra sound and I wonder daily if they will find something else wrong with her or if she will even live that long. Wondering so many things daily can give you heart burn lol well its probably pregnancy but still. I have wondered after reading many posts in HoPE for families why some with Tiannas condition live even though they seem worse then she is. I decided its like wondering why some infants die of SIDS and some dont. There is just not a rhyme or reason for it.
As for my back it is a bit better but only if I dont do things I should be doing. Bending is not so good and sitting for long periods like longer then 10 min makes it ache something fierce. I worry that I will make it worse if I am not careful. However I still get up and move about the house but ohh what a pain it is to not pick things up. With 5 kids on the spectrum my house is a disaster they just are not great at cleaning up after themselves. Even if they do "clean" it is still not really clean at least it is better. I really want to mop the kitchen and organize My sons toys that have been scattered all over the living room for weeks. However I dont think that will happen anytime soon.
As for my back it is a bit better but only if I dont do things I should be doing. Bending is not so good and sitting for long periods like longer then 10 min makes it ache something fierce. I worry that I will make it worse if I am not careful. However I still get up and move about the house but ohh what a pain it is to not pick things up. With 5 kids on the spectrum my house is a disaster they just are not great at cleaning up after themselves. Even if they do "clean" it is still not really clean at least it is better. I really want to mop the kitchen and organize My sons toys that have been scattered all over the living room for weeks. However I dont think that will happen anytime soon.
Sunday, April 20, 2014
Another appointment Some insights into my children on the spectrum
I went to my other midwives yesterday it was a good visit. If anyone wants to give homebirth a go or just some excellent prenatal care or birthing classes. I recommend them http://birthingyourway.com/ They have been a great support during this difficult time. I like my other midwives as well they deliver in the hospital they are athttps://www.facebook.com/
I have gotten the keepsake boxes for almost all my children just missing the oldest and a blanket for each of them but ryan his favorite color is red so its a bit more challenging to find a soft blanket in red
I did talk to the counselor at school today I filled out forms and she asked how much the kids knew. I went over each child and how I thought they were doing then she said something about 4 files on her way out and I realized I had not discussed if she could see my only child without an IEP. My poor Neuro typical child she so gets lost in the day with all the melt downs and tantrums I think she might be in need of a little more attention. I then hunted her down and mentioned that I had a NT child as my third she was slightly surprised as I usually dont mention her mostly because we are always dealing with the others who have IEP's. She had me fill out a form for her to see her I asked her to also see how she is dealing with being in a sibling group with all the rest on the spectrum. I love my Beth she has always been so easy even as a baby she was the only one that slept through the night. She nursed right away and is usually very pleasant. Not that she did not have some moments and cry but usually just cause she needed something ie a diaper change, burp or feeding. I just thought God had given me an super easy child as my older two could be challenging as infants. LOL My husband and I have now come to the conclusion she is probably how most babies are and should have realized our others had some struggles a bit sooner. I used to describe my others as grumpy or moody nothing seemed to appease them easily. I wonder sometimes if some of these behavior issues could not be caught sooner just from observing babies.
I have gotten the keepsake boxes for almost all my children just missing the oldest and a blanket for each of them but ryan his favorite color is red so its a bit more challenging to find a soft blanket in red
I did talk to the counselor at school today I filled out forms and she asked how much the kids knew. I went over each child and how I thought they were doing then she said something about 4 files on her way out and I realized I had not discussed if she could see my only child without an IEP. My poor Neuro typical child she so gets lost in the day with all the melt downs and tantrums I think she might be in need of a little more attention. I then hunted her down and mentioned that I had a NT child as my third she was slightly surprised as I usually dont mention her mostly because we are always dealing with the others who have IEP's. She had me fill out a form for her to see her I asked her to also see how she is dealing with being in a sibling group with all the rest on the spectrum. I love my Beth she has always been so easy even as a baby she was the only one that slept through the night. She nursed right away and is usually very pleasant. Not that she did not have some moments and cry but usually just cause she needed something ie a diaper change, burp or feeding. I just thought God had given me an super easy child as my older two could be challenging as infants. LOL My husband and I have now come to the conclusion she is probably how most babies are and should have realized our others had some struggles a bit sooner. I used to describe my others as grumpy or moody nothing seemed to appease them easily. I wonder sometimes if some of these behavior issues could not be caught sooner just from observing babies.
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, 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 :)
Tuesday, August 20, 2013
Aspergirls
Well shortly after my sons testing the special ed teacher for my second daughter approached me she is 12 and asked if I had her behavior tested. I said for what exactly as she had been tested and they told me the same thing they have told me since she was 5 years old SHE IS FINE! Your just worried because she is normal and your oldest is gifted. Sign! I should have been more forceful I knew from a young age she had some problems but hey live and learn.
Well the special ed lady says well she does not make eye contact I said so she has always been that way that is just her. She gave me this look like I should know better which really I should as I do work with special needs kids but they are really profound so a mild case like my daughter is harder to spot. Then she says well when I try to get her to discuss what problems she is having with math she seems to ignore me for a couple minutes then she might respond or she might not. I said well yeah she has always done that she just takes a bit to gather her thoughts. She asked if I would be ok if they tested her for behavior issues I said fine. So she sends me to go get the screenings she wants to try and WOW big surprise she has me pick up ASQ and GARS and a couple others. I had never filled either of these questionnaires out before. As I am filling them out I realize they are for Autism or Atypical behaviors and OMG!
My second daughter had not smiled before like age 5 much and even then usually her expressions do not match the situation. If I could have used one word to describe my daughter 2 it would be grumpy even from a super young age. She had and still does have weird OCD things she at the age of 2 had played with her belly button so much she could pull it off her stomach. She then moved to biting she was always biting her sister and nothing seemed to help stop her. She sucked her clothes till they were misshapen and sucked her hair. She at the age of about 6 became obsessed with hugs she constantly wanted to hug which she never had really wanted before and frequently shoved people away when they wanted one. It reached the point where I had to limit her to 2 hugs per person per day and only if she asked for one, if someone else instigated it that did not count. Then she moved to chewing her fingernails which was ok till about 11 years old when she chewed the whole nail off down to the cuticle it was bad surprised it did not bleed.
I realized as I filled these out that there was a high probability that I now had another child on the spectrum. I also realized my oldest daughter fit alot of the asperger signs I was shocked she is 15 how could I have missed that I guess I always assumed erroneously that they were like rainman. I approached the special ed department and asked to have my oldest tested as well. Well the Psychologist on retainer for the school observed my daughters and went over the questionnaires she then had me read a couple books before our meeting she said they might help me decide if I think these really describe my daughters. I was amazed at how two girls who seemed very different could really have the same condition.
After reading the books I was convinced that after years of searching we might have discovered why my oldest with an almost genius IQ struggled to pass english mostly due to reading, she does not picture what she reads. My second I finally knew what she needed and why she seems fine one minute and looses it the next. They were probably both aspergirls I was in shock. Well we met with the psychologist and she agreed that they most likely are aspies in the 90% probability range. Why does it take 15 and 12 years to get a diagnoses or even be pointed in the right direction? I had my daughters tested multiple times and yet no one ever mentioned they might have a condition. I guess it happens but I had hoped we had come farther in the last 30 years.
Well the special ed lady says well she does not make eye contact I said so she has always been that way that is just her. She gave me this look like I should know better which really I should as I do work with special needs kids but they are really profound so a mild case like my daughter is harder to spot. Then she says well when I try to get her to discuss what problems she is having with math she seems to ignore me for a couple minutes then she might respond or she might not. I said well yeah she has always done that she just takes a bit to gather her thoughts. She asked if I would be ok if they tested her for behavior issues I said fine. So she sends me to go get the screenings she wants to try and WOW big surprise she has me pick up ASQ and GARS and a couple others. I had never filled either of these questionnaires out before. As I am filling them out I realize they are for Autism or Atypical behaviors and OMG!
My second daughter had not smiled before like age 5 much and even then usually her expressions do not match the situation. If I could have used one word to describe my daughter 2 it would be grumpy even from a super young age. She had and still does have weird OCD things she at the age of 2 had played with her belly button so much she could pull it off her stomach. She then moved to biting she was always biting her sister and nothing seemed to help stop her. She sucked her clothes till they were misshapen and sucked her hair. She at the age of about 6 became obsessed with hugs she constantly wanted to hug which she never had really wanted before and frequently shoved people away when they wanted one. It reached the point where I had to limit her to 2 hugs per person per day and only if she asked for one, if someone else instigated it that did not count. Then she moved to chewing her fingernails which was ok till about 11 years old when she chewed the whole nail off down to the cuticle it was bad surprised it did not bleed.
I realized as I filled these out that there was a high probability that I now had another child on the spectrum. I also realized my oldest daughter fit alot of the asperger signs I was shocked she is 15 how could I have missed that I guess I always assumed erroneously that they were like rainman. I approached the special ed department and asked to have my oldest tested as well. Well the Psychologist on retainer for the school observed my daughters and went over the questionnaires she then had me read a couple books before our meeting she said they might help me decide if I think these really describe my daughters. I was amazed at how two girls who seemed very different could really have the same condition.
After reading the books I was convinced that after years of searching we might have discovered why my oldest with an almost genius IQ struggled to pass english mostly due to reading, she does not picture what she reads. My second I finally knew what she needed and why she seems fine one minute and looses it the next. They were probably both aspergirls I was in shock. Well we met with the psychologist and she agreed that they most likely are aspies in the 90% probability range. Why does it take 15 and 12 years to get a diagnoses or even be pointed in the right direction? I had my daughters tested multiple times and yet no one ever mentioned they might have a condition. I guess it happens but I had hoped we had come farther in the last 30 years.
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