RESOURCES MENTIONED IN TODAY'S BLOG
1.. State Early Intervention Services (in SC BabyNet, in Utah Baby Watch, every state has one just do a google search to find yours) which provides evaluations, in home Occupational Therapy, Physical Therapy, Speech Therapy, ABA Therapy and consulting services on a free or sliding income scale. Other therapies and services available also.
2. Palmetto Pediatrics Special Needs
3.Immunizations Info.
4.Bumbo chair
5.Texture teethers and vibrating teethers
6.Weighted/compression vest
7. Therapy brush
8. Chewy
9. Jogging Trampoline
10. Tent or play hut
11. Prevacid for children for acid reflux (prescription)
12. Silk Soy Milk or Lactaid Milk for lactose intolerance
13.Soy yogurt that tastes good
14.Autism symptoms
15. ADHD symptoms
16. Hypoglycemia symptoms
17. VSD and ASD (holes in the heart) info.
18.Radioulnar synostosis
19. Lactose Intolerance symptoms
20. Acid reflux symptoms in babies (including "silent symptoms"
Tuesday, March 20, 2012
2 Princesses and a Prince
Miriam (MJ)and Lydia, my 7 and 5 year old little princesses, both have autism. Jonathan (Nathan), my little 18 month old prince is typically developing other than still cruising the furniture instead of walking.
Lydia was diagnosed with autism at age 2 (and before MJ) even though she didn't show any signs of developmental delay until her 18 month shots. MJ was diagnosed with autism at age 5, but she showed signs of developmental delay after 4 month shots. I had slowed down the immunization schedule with Lydia after seeing MJ's delays.
MJ was rolling over right on schedule, then immediately after her 4 months shots she stopped. She didn't sit up at 6 months or even 8 months. It was at that time she was evaluated for early intervention and we found she was delayed in her speech, gross motor (ie crawling) and fine motor because of radial ulnar synostosis (her bones are fused at the elbow and wrist on both arms. Inherited from her daddy, he has it on one arm.) Early Intervention started their services and thanks to then-only-therapy bumbo chair, (now you can get the bumbo chair anywhere) MJ started sitting, crawling and cruising all in 3 weeks time. She then started walking at 16 months. Speech helped with her sensory issues with food textures and building vocabulary through action, reading stories, and songs. We also found out she had acid reflux in addition to lactose intolerance. MJ's first pedatrician didn't work out for several reason, such as non-support for nursing, a prescription for OT for MJ's arms without x-rays (which we ended up getting x-rays due to a car accident but the technician read them wrong at the hospital and the pediatrician didn't even look at them herself, the OT suggested an orthapedic surgeon to read the x-rays, which within five minutes saw the diagnosis.), prescribing juice to a 2 month old for constipation problems, and the last straw was calling me a paranoid mama for asking about things I saw. After that I promptly got referrals from friends for a new pediatrician. We found a good clinic and I picked the doctor because his last name was the same as some neighbors of ours, who we felt like they were family. Not the most scientific way but he's been a good doctor and we went back to him after moving back South Carolina. He promptly put MJ on soy milk which cleared up her constipation, ordered tests, and helped to find in-home early intervention (it's called Baby Net in South Carolina, their charges are on a sliding scale and free if the child is on Medicaid) after I found out from one of my friends about it. So in about 2 years time, we found out that MJ had lactose intolerance, acid reflux, radial-ulnar synostosis, speech delays, motor delays, and sensory issues including seeking out sensory input and avoiding loud noises especially. So she received Occupational Therapy (OT), Physical Therapy (PT), Speech Therapy (ST) and Intervention Consulting. She is highly social which delayed the diagnosis of autism until she was 5 years old. When MJ was 2 years old she graduated from PT and we moved from South Carolina to Utah. Her sister Lydia was born in December of this year. She continued early intervention services with Occupational Therapy, Speech Therapy and intervention services until age 3, then she moved to preschool. She was mainstreamed with a few special needs children in the classroom, then moved to reverse mainstream with a few typically developing children and mostly special needs, then ended up in a self-contained special ed classroom due to the sheer number of children, the sensitivity to loud classrooms, and constant need for one on one attention. It was during one of my visits to the preschool that I noticed that MJ started acting out right before snack time and she calmed down right after she ate. So I talked with the doctor and mentioned that I thought she exhibited signs of hypoglycemia (low blood sugar- I have it too), so he prescribed snacks every 2 hours for when she started kindergarten. At age 5, MJ started kindergarten half-days to begin with because she still napped in the afternoons. Then mid-year she grew out of her naps and started attending full-day. We had moved to a different city in Utah so this was another change for her and us. It was while we were here that we had MJ tested through the University and she received a diagnosis of autism and ADHD. The summer after that we moved back to the area we were in originally in Utah. Nathan was born the first day of school, August 24th. MJ attended first grade in a life skills class. It took a while but after sitting with the special needs team we came up with plans that included a huge "sensory diet" to help MJ with her sensory seeking. The sensory diet included a trampoline, a chewy (she still mouths things), a weighted vest, a soft brush to brush her arms, deep pressure massage, a tent for a quiet area to take a break and some others that I can't remember. Also a change in the assistant helping her made a huge difference. During this time, our home was in turmoil, which is another story all together but it made things more difficult for MJ. This past summer the kids and I moved back to South Carolina. MJ is now in 2nd grade and now we are working through the process of once again getting the sensory diet and additional assistants in the classroom. I am done with moving and pray for no more school changes. MJ is a happy girl, loves playing outside, and even taught herself how to ride a bike. She loves her sister and her brother and playing with "kids" as she calls children. She's a daddy's girl and loves anything he does.
Lydia was typically developing and reached her rolling, crawling, walking, and talking milestones all within normal time frames until she was 24 months old. She also had acid reflux and lactose intolerance since birth. Both girls have now outgrown both acid reflux and lactose intolerance.I had slowed down the shot schedule with her due to MJ's delays. However, daddy took Lydia to her 18 month old well-visit (we took her a little late at 20 months) and she came back from that visit with more shots than I indicated she needed. Right after that, Lydia lost all of her words and showed sensory processing issues as well as fears of loud noises and claustrophobia. She started rocking back and forth, and became very introverted. Lydia has always been my empathetic child and she never ever lost that, which I am so thankful for. So Lydia also started receiving early intervention services of speech and consulting. (In Utah, it's called Baby Watch) She didn't need PT or OT. (she doesn't have radial-ulnar synostosis). During this time she received her diagnosis of autism. She showed more classic signs of autism than MJ so she was able to receive her diagnosis relatively easy. She also went to preschool starting at age 3 years old. As Lydia has gotten older some new symptoms of autism has crept up, such as holding her fingers in the shape of a pinhole to look through it as through a telescope, laughing inappropriately, repetitive behaviors such as rocking and running back and forth. Also going from toy, to chair, to trampoline, to shutting a cabinet door, to the trash can, over and over again. She loves her blanket she named "kiki". She's had kiki since she was 2 weeks old, it was a gift from a distant family member. She loves riding her little ride on car outside and is a runner so when we are outside, running errands or traveling she is on a harness back pack. She's also a climber and a little gymnast. She is very strong and agile. She loves coffee with lots of cream and sugar. She's a mama's girl.
Nathan was born with some minor complications. His lungs took a little while to expand and that was recognized because he was "humming" for 2 days. He left the hospital with just a little jaundice but nothing to stay in for. Then at his well visit at 5 days old we noticed he was a lot more yellow. Doctor also heard a heart murmur. So he sent him back to the hospital to be put under bili lights, to get an echocardiogram and for me to nurse him every two hours with no skips whatsoever. Nathan responded well to bili treatment and nursing so he was sent home 24 hours later. The echocardiogram showed two little holes in his heart one in the upper chamber (ASD) and one in the lower chamber (VSD) The upper one most people have any way and is considered somewhat normal, the lower one is not. We were informed that they could close up but even if they didn't he could still lead a normal life. He had a follow-up at 10 months and no heart murmur was found. So just one more follow-up and if all is clear, his heart case will be closed. Praise God for literally healing Nathan's heart!
Nathan has had only 1 shot and even then I questioned after getting it because he cried for days after. He's been probably only about 1 month or so behind in reaching most milestones but not enough to warrant early intervention as of yet. He is very social and captures everyone's heart that he meets. I am going to have to get a gun to keep the girls away from him! He loves Lydia and where she's at, he is. And doing whatever she's doing. Even if she doesn't pay him any attention. When we were bringing Nathan home from the hospital when he was born, as we put him next to Lydia in the car, she started crying! I said "and so it begins! The sibling rivalry!" I think Nathan has been trying to get her approval ever since! MJ loves him and interacts well with him too and is a good big sister to both Lydia and Nathan. Lydia has the unique opportunity to be both little and big sister and Nathan the only brother and baby.
So here we are now having our triumphs and struggles. God has seen us through it all!
Lydia was diagnosed with autism at age 2 (and before MJ) even though she didn't show any signs of developmental delay until her 18 month shots. MJ was diagnosed with autism at age 5, but she showed signs of developmental delay after 4 month shots. I had slowed down the immunization schedule with Lydia after seeing MJ's delays.
MJ was rolling over right on schedule, then immediately after her 4 months shots she stopped. She didn't sit up at 6 months or even 8 months. It was at that time she was evaluated for early intervention and we found she was delayed in her speech, gross motor (ie crawling) and fine motor because of radial ulnar synostosis (her bones are fused at the elbow and wrist on both arms. Inherited from her daddy, he has it on one arm.) Early Intervention started their services and thanks to then-only-therapy bumbo chair, (now you can get the bumbo chair anywhere) MJ started sitting, crawling and cruising all in 3 weeks time. She then started walking at 16 months. Speech helped with her sensory issues with food textures and building vocabulary through action, reading stories, and songs. We also found out she had acid reflux in addition to lactose intolerance. MJ's first pedatrician didn't work out for several reason, such as non-support for nursing, a prescription for OT for MJ's arms without x-rays (which we ended up getting x-rays due to a car accident but the technician read them wrong at the hospital and the pediatrician didn't even look at them herself, the OT suggested an orthapedic surgeon to read the x-rays, which within five minutes saw the diagnosis.), prescribing juice to a 2 month old for constipation problems, and the last straw was calling me a paranoid mama for asking about things I saw. After that I promptly got referrals from friends for a new pediatrician. We found a good clinic and I picked the doctor because his last name was the same as some neighbors of ours, who we felt like they were family. Not the most scientific way but he's been a good doctor and we went back to him after moving back South Carolina. He promptly put MJ on soy milk which cleared up her constipation, ordered tests, and helped to find in-home early intervention (it's called Baby Net in South Carolina, their charges are on a sliding scale and free if the child is on Medicaid) after I found out from one of my friends about it. So in about 2 years time, we found out that MJ had lactose intolerance, acid reflux, radial-ulnar synostosis, speech delays, motor delays, and sensory issues including seeking out sensory input and avoiding loud noises especially. So she received Occupational Therapy (OT), Physical Therapy (PT), Speech Therapy (ST) and Intervention Consulting. She is highly social which delayed the diagnosis of autism until she was 5 years old. When MJ was 2 years old she graduated from PT and we moved from South Carolina to Utah. Her sister Lydia was born in December of this year. She continued early intervention services with Occupational Therapy, Speech Therapy and intervention services until age 3, then she moved to preschool. She was mainstreamed with a few special needs children in the classroom, then moved to reverse mainstream with a few typically developing children and mostly special needs, then ended up in a self-contained special ed classroom due to the sheer number of children, the sensitivity to loud classrooms, and constant need for one on one attention. It was during one of my visits to the preschool that I noticed that MJ started acting out right before snack time and she calmed down right after she ate. So I talked with the doctor and mentioned that I thought she exhibited signs of hypoglycemia (low blood sugar- I have it too), so he prescribed snacks every 2 hours for when she started kindergarten. At age 5, MJ started kindergarten half-days to begin with because she still napped in the afternoons. Then mid-year she grew out of her naps and started attending full-day. We had moved to a different city in Utah so this was another change for her and us. It was while we were here that we had MJ tested through the University and she received a diagnosis of autism and ADHD. The summer after that we moved back to the area we were in originally in Utah. Nathan was born the first day of school, August 24th. MJ attended first grade in a life skills class. It took a while but after sitting with the special needs team we came up with plans that included a huge "sensory diet" to help MJ with her sensory seeking. The sensory diet included a trampoline, a chewy (she still mouths things), a weighted vest, a soft brush to brush her arms, deep pressure massage, a tent for a quiet area to take a break and some others that I can't remember. Also a change in the assistant helping her made a huge difference. During this time, our home was in turmoil, which is another story all together but it made things more difficult for MJ. This past summer the kids and I moved back to South Carolina. MJ is now in 2nd grade and now we are working through the process of once again getting the sensory diet and additional assistants in the classroom. I am done with moving and pray for no more school changes. MJ is a happy girl, loves playing outside, and even taught herself how to ride a bike. She loves her sister and her brother and playing with "kids" as she calls children. She's a daddy's girl and loves anything he does.
Lydia was typically developing and reached her rolling, crawling, walking, and talking milestones all within normal time frames until she was 24 months old. She also had acid reflux and lactose intolerance since birth. Both girls have now outgrown both acid reflux and lactose intolerance.I had slowed down the shot schedule with her due to MJ's delays. However, daddy took Lydia to her 18 month old well-visit (we took her a little late at 20 months) and she came back from that visit with more shots than I indicated she needed. Right after that, Lydia lost all of her words and showed sensory processing issues as well as fears of loud noises and claustrophobia. She started rocking back and forth, and became very introverted. Lydia has always been my empathetic child and she never ever lost that, which I am so thankful for. So Lydia also started receiving early intervention services of speech and consulting. (In Utah, it's called Baby Watch) She didn't need PT or OT. (she doesn't have radial-ulnar synostosis). During this time she received her diagnosis of autism. She showed more classic signs of autism than MJ so she was able to receive her diagnosis relatively easy. She also went to preschool starting at age 3 years old. As Lydia has gotten older some new symptoms of autism has crept up, such as holding her fingers in the shape of a pinhole to look through it as through a telescope, laughing inappropriately, repetitive behaviors such as rocking and running back and forth. Also going from toy, to chair, to trampoline, to shutting a cabinet door, to the trash can, over and over again. She loves her blanket she named "kiki". She's had kiki since she was 2 weeks old, it was a gift from a distant family member. She loves riding her little ride on car outside and is a runner so when we are outside, running errands or traveling she is on a harness back pack. She's also a climber and a little gymnast. She is very strong and agile. She loves coffee with lots of cream and sugar. She's a mama's girl.
Nathan was born with some minor complications. His lungs took a little while to expand and that was recognized because he was "humming" for 2 days. He left the hospital with just a little jaundice but nothing to stay in for. Then at his well visit at 5 days old we noticed he was a lot more yellow. Doctor also heard a heart murmur. So he sent him back to the hospital to be put under bili lights, to get an echocardiogram and for me to nurse him every two hours with no skips whatsoever. Nathan responded well to bili treatment and nursing so he was sent home 24 hours later. The echocardiogram showed two little holes in his heart one in the upper chamber (ASD) and one in the lower chamber (VSD) The upper one most people have any way and is considered somewhat normal, the lower one is not. We were informed that they could close up but even if they didn't he could still lead a normal life. He had a follow-up at 10 months and no heart murmur was found. So just one more follow-up and if all is clear, his heart case will be closed. Praise God for literally healing Nathan's heart!
Nathan has had only 1 shot and even then I questioned after getting it because he cried for days after. He's been probably only about 1 month or so behind in reaching most milestones but not enough to warrant early intervention as of yet. He is very social and captures everyone's heart that he meets. I am going to have to get a gun to keep the girls away from him! He loves Lydia and where she's at, he is. And doing whatever she's doing. Even if she doesn't pay him any attention. When we were bringing Nathan home from the hospital when he was born, as we put him next to Lydia in the car, she started crying! I said "and so it begins! The sibling rivalry!" I think Nathan has been trying to get her approval ever since! MJ loves him and interacts well with him too and is a good big sister to both Lydia and Nathan. Lydia has the unique opportunity to be both little and big sister and Nathan the only brother and baby.
So here we are now having our triumphs and struggles. God has seen us through it all!
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