DizNee Luver
Luver of all things Disney!
- Joined
- Feb 2, 2009
- Messages
- 10,605
First off, thank you mechurchlady for bringing this section to my attention!!!
I am a wife of 25 yrs & mother to 7 kids. We have 3 biological sons (ages 23, 22 & 19) & have an adopted son (age 8), adopted daughter (age 3) & adopted twin girls (ages 22mo). We were foster parents for 8 years & adopted all 4 kids (all from different families...except the twins of course) out of the foster care system. These kids all come in with different issues & all 4 of our kiddos come from meth-moms.
Our DS (8) is A.D.D. He is the sweetest boy who only wants to please people. He tends to be a follower which concerns us.....he wants other kids to like him & will do things he shouldn't. He has learning issues in reading & math and actually makes himself sick to his stomach when they do math timed tests. He's behind all the other kids in his class, but he tries so hard!!
Our DD (3) has always had seperation anxiety. This increased when after being with us from 2mo to right before her 2nd bday, she got sent home to her biological mother. She was there for just a couple months but a lot of damage was done. We have her in play therapy to work thru some of those issues that cause temper tantrums & emotional meltdowns. We have to be very careful when anyone leaves the house, to make sure they tell her goodbye & also tell her you'll be coming back.
Our beautiful twins (22mo) came to us right out of the NICU. They were born at 34 weeks. Twin 1 had some early feeding issues but was using a bottle by the time we took her home at one month. She has a soft palate (closed but no hard bone in the roof of her mouth). The doctors told us she was pretty healthy.....after getting her home....I knew she wasn't as healthy as they thought.
Twin 2 had lots of issues. She had a full (huge) cleft palate & was unable to eat orally. The finally placed a g-tube in at 3 weeks. She had a very noticable recessed chin. She has an ASD & VSD (holes in the heart). She needed O2 & an apnea/heart monitor. She is diagnosed with Pierre Robin Syndrome. She came home on the monitor & O2 & kept them until she was about 6 months.
We have to travel about 6 hours to a Children's Hospital that specializes in facial issues. We have a great team. The girls both have had 2 sets of tubes in their ears, lots of hearing tests (including a sedated hearing test), have been seen by the feeding clinic, genetics team (they definately have some sort of genetic issue but it could take years to figure out....or maybe never), cardiac team....which I pushed to have the "healthy" twin looked at & she had a hole in her heart & pulminary stenosis. We've also seen the oncology team after twin #1 started bleeding out her ear. They did a blood draw in our home town & found out her Vitamin K was extremely low. No one ever did explain how that would happen & if there is anything we can do to avoid that again. Twin 2 has had the cleft palate repaired & so far it's holding. We've been told that sometimes the really big clefts can come apart & need additional surgeries......keeping fingers crossed to avoid that.
We've been blessed with an Early Intervention team of speech, feeding & physical therapy since they came home from the hospital. We now have added occupational therapy.
The twins are very delayed. Twin 1 started walking at 18 months & twin 2 is just not starting to let go of the furniture to stand solo for about 10 secs. Twin 1 will only bottle feed & eat yogurt. Twin 2 is strictly g-tube fed. They both have sensory issues & at times tend to totally shut off. We thought early on it was hearing issues, but since we know that's okay....we worry about possible Austism. Their biological brother is severly autistic & the 4 yr old sister is "borderline" autistic. They also have to worry about a sleuth of other medical issues that run in the parents: seizures, high blood pressure, etc.
We did find out (positive thru blood tests) that they are highly allergic to eggs. So when we do try to give tastes to Twin 1, we have to read the labels very carefully.
So as you can see we have our hands full, but I feel blessed to have them all in our lives. I will probably pop in & out of here to get advise, let off steam, de-stress, etc.
I would love advice from other parents that have sensory issues children. What we can try, what we should expect, etc.
We did just get back from 2 days at Disneyland.....this was not a good outing. The twins do not like being outside of the house. They were stressed out to the point of panic-crying. We tried to find quiet areas to rest & they only did a total of 3 rides. It was amazing to realize just how loud everything there was. The one thing that surprised us was....they had no reaction at all to the fireworks. They didn't startle from the loud booms (and we got stuck close to where they shoot them off), they didn't look up once or towards the sounds......to me, that seems very strange. Any ideas?
Thanks for reading & hope to get to know some of you & can be a shoulder for you in the near future.
I am a wife of 25 yrs & mother to 7 kids. We have 3 biological sons (ages 23, 22 & 19) & have an adopted son (age 8), adopted daughter (age 3) & adopted twin girls (ages 22mo). We were foster parents for 8 years & adopted all 4 kids (all from different families...except the twins of course) out of the foster care system. These kids all come in with different issues & all 4 of our kiddos come from meth-moms.
Our DS (8) is A.D.D. He is the sweetest boy who only wants to please people. He tends to be a follower which concerns us.....he wants other kids to like him & will do things he shouldn't. He has learning issues in reading & math and actually makes himself sick to his stomach when they do math timed tests. He's behind all the other kids in his class, but he tries so hard!!
Our DD (3) has always had seperation anxiety. This increased when after being with us from 2mo to right before her 2nd bday, she got sent home to her biological mother. She was there for just a couple months but a lot of damage was done. We have her in play therapy to work thru some of those issues that cause temper tantrums & emotional meltdowns. We have to be very careful when anyone leaves the house, to make sure they tell her goodbye & also tell her you'll be coming back.
Our beautiful twins (22mo) came to us right out of the NICU. They were born at 34 weeks. Twin 1 had some early feeding issues but was using a bottle by the time we took her home at one month. She has a soft palate (closed but no hard bone in the roof of her mouth). The doctors told us she was pretty healthy.....after getting her home....I knew she wasn't as healthy as they thought.
Twin 2 had lots of issues. She had a full (huge) cleft palate & was unable to eat orally. The finally placed a g-tube in at 3 weeks. She had a very noticable recessed chin. She has an ASD & VSD (holes in the heart). She needed O2 & an apnea/heart monitor. She is diagnosed with Pierre Robin Syndrome. She came home on the monitor & O2 & kept them until she was about 6 months.
We have to travel about 6 hours to a Children's Hospital that specializes in facial issues. We have a great team. The girls both have had 2 sets of tubes in their ears, lots of hearing tests (including a sedated hearing test), have been seen by the feeding clinic, genetics team (they definately have some sort of genetic issue but it could take years to figure out....or maybe never), cardiac team....which I pushed to have the "healthy" twin looked at & she had a hole in her heart & pulminary stenosis. We've also seen the oncology team after twin #1 started bleeding out her ear. They did a blood draw in our home town & found out her Vitamin K was extremely low. No one ever did explain how that would happen & if there is anything we can do to avoid that again. Twin 2 has had the cleft palate repaired & so far it's holding. We've been told that sometimes the really big clefts can come apart & need additional surgeries......keeping fingers crossed to avoid that.
We've been blessed with an Early Intervention team of speech, feeding & physical therapy since they came home from the hospital. We now have added occupational therapy.
The twins are very delayed. Twin 1 started walking at 18 months & twin 2 is just not starting to let go of the furniture to stand solo for about 10 secs. Twin 1 will only bottle feed & eat yogurt. Twin 2 is strictly g-tube fed. They both have sensory issues & at times tend to totally shut off. We thought early on it was hearing issues, but since we know that's okay....we worry about possible Austism. Their biological brother is severly autistic & the 4 yr old sister is "borderline" autistic. They also have to worry about a sleuth of other medical issues that run in the parents: seizures, high blood pressure, etc.
We did find out (positive thru blood tests) that they are highly allergic to eggs. So when we do try to give tastes to Twin 1, we have to read the labels very carefully.
So as you can see we have our hands full, but I feel blessed to have them all in our lives. I will probably pop in & out of here to get advise, let off steam, de-stress, etc.
I would love advice from other parents that have sensory issues children. What we can try, what we should expect, etc.
We did just get back from 2 days at Disneyland.....this was not a good outing. The twins do not like being outside of the house. They were stressed out to the point of panic-crying. We tried to find quiet areas to rest & they only did a total of 3 rides. It was amazing to realize just how loud everything there was. The one thing that surprised us was....they had no reaction at all to the fireworks. They didn't startle from the loud booms (and we got stuck close to where they shoot them off), they didn't look up once or towards the sounds......to me, that seems very strange. Any ideas?
Thanks for reading & hope to get to know some of you & can be a shoulder for you in the near future.
