Introducing My Family

[DizNee Luver]

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.

 

[mechurchlady]

Howdy to a diva and welcome to disAbilities.

I have a mother iwth hyper hyper hypersensitivity and I am hypersensitive with a few hyposentive spots. First and foremost is that you got the babies at birth which helps you watch them and monitor them. They are too young to explain why they are reacting. Sensitive people can be hypo and hyper. I need to be hugged, snugged and pressure applied so I stuff my face and belly for the pressure. That is hyposensitive but I also cannot tolerate some stuff which is hypersensitive. I love sound but some sounds shut me down.

Mom is ultra deluxe superhypersensitive. She could hear cows lowing miles away, lived her life with dim light bulbs, and startles when she here noises.

the others will be around soon and boy you did a great job explaining things. It helps to know everything as some people just say autism or picky eater with more info. SID/SPD is seperate from Autism but is a neurovariation meaning miswired brain. The girls have had oral medical problems and that can lead to not eating or limits on food. It may hurt to eat or swallow or it may feel weird when chewing food. Sometimes when things are bad a person/kid will avoid that thing especially in SID cases.

I am sorry about DLR trip and remember helping you out online earlier. I hoped it helped. I know the people in this board can help you. They have helped me also and I explain a lot about neurovarations that their kids cannot tell the parents about. Special needs kids and adults usually have a root cause for an action like picking at toes, scabs and wallpaper is from nervous energy which can come from stress for example. Yelling at the kid to stop the action does not work as they have that energy that needs release so the parent must stop the energy overload or divert the energy to harmless things like beads in a pocket or stress balls.

Hugs
Laurie

 

[peemagg]

I have no advice, but you are an amazing person in my book!!! I can not imagine trying to handle all those special little people at once. You go Girl!!!

Welcome to the boards!

 

[DizNee Luver]

Howdy to a diva and welcome to disAbilities.

I have a mother iwth hyper hyper hypersensitivity and I am hypersensitive with a few hyposentive spots. First and foremost is that you got the babies at birth which helps you watch them and monitor them. They are too young to explain why they are reacting. Sensitive people can be hypo and hyper. I need to be hugged, snugged and pressure applied so I stuff my face and belly for the pressure. That is hyposensitive but I also cannot tolerate some stuff which is hypersensitive. I love sound but some sounds shut me down.

Mom is ultra deluxe superhypersensitive. She could hear cows lowing miles away, lived her life with dim light bulbs, and startles when she here noises.

the others will be around soon and boy you did a great job explaining things. It helps to know everything as some people just say autism or picky eater with more info. SID/SPD is seperate from Autism but is a neurovariation meaning miswired brain. The girls have had oral medical problems and that can lead to not eating or limits on food. It may hurt to eat or swallow or it may feel weird when chewing food. Sometimes when things are bad a person/kid will avoid that thing especially in SID cases.

I am sorry about DLR trip and remember helping you out online earlier. I hoped it helped. I know the people in this board can help you. They have helped me also and I explain a lot about neurovarations that their kids cannot tell the parents about. Special needs kids and adults usually have a root cause for an action like picking at toes, scabs and wallpaper is from nervous energy which can come from stress for example. Yelling at the kid to stop the action does not work as they have that energy that needs release so the parent must stop the energy overload or divert the energy to harmless things like beads in a pocket or stress balls.

Hugs
Laurie

I can't begin to thank you for all the advice you given me & tuning me into this thread!!! I love having a place I can go to for help & support!!!

I have no advice, but you are an amazing person in my book!!! I can not imagine trying to handle all those special little people at once. You go Girl!!!

Welcome to the boards!

Thank you very much.....I feel that being a mother was my calling in life & these little ones were chosen special for me. Some days are very long & stressful but when they crawl up in your lap & smile & say mamma.....it melts my heart.....makes it all worth while!!!
Thank you for the welcome!!

 

[bookwormde]

Welcome and thank you for opening your house, hearts and family to these children.

With the biological family genetics you are on a reasonable track to be reviewing the twins for sensory differentials. Unfortunately there is no simple checklist since there is such broad variability in sensitivity levels (both heightened and diminished), the categories of sensitivities and the interface between different sensitivities along with factors of duration, general anxiety level, and hyperfocus. Figuring it out is best done letting go of preconceived idea of what and why you child is reacting a certain way or doing certain things and doing a lot of observation and some formal documentation of what you observe. It is really important to educate yourself on both sensory issues and the Autism spectrum (like you do not have enough to do already).

If you are looking for a broader perspective of the autism spectrum (beyond “classic” autism) you might want to read Tony Atwood’s “The complete guide to Aspergers” C2007 available on Amazon for about $25. With all the unrelated issues and challenges that your twins have it may well be many years before you really know where and if they are on the spectrum.

I would call it a great success if they were able to do 3 rides.

For your DS8 just add an accommodation to his IEP that he has “flexible” amounts of time to take his tests along with any other supports that may be helpful.

I hope we can be of some support and help, please feel free to ask questions, there are lots of parents if children with a variety of challenges on this board so chances are someone has dealt with something similar with almost anything you could ask.

bookwormde

 

[mrsmom]

Hi and welcome, My dd now 15 has pierre Robin syndrome, If you have any questions feel free to ask.
Kim

 

[ireland_nicole]

Hi! and Welcome!
I don't have any advice at the moment, other than to agree w/ what Bookwormde said. Is there any king of testing accomodation on his IEP or 504 that provides for additional time, frequent breaks, quiet area, etc.? These might help him with the anxiety.

Other than that, wow- sure looks like you have your hands full. I always thought we'd have a large family and hopefully adopt some, but after the two we have and their needs DH put his foot down. I'm so glad that you have each other to share the love and challenges these children present.

 

[DizNee Luver]

Welcome and thank you for opening your house, hearts and family to these children.

With the biological family genetics you are on a reasonable track to be reviewing the twins for sensory differentials. Unfortunately there is no simple checklist since there is such broad variability in sensitivity levels (both heightened and diminished), the categories of sensitivities and the interface between different sensitivities along with factors of duration, general anxiety level, and hyperfocus. Figuring it out is best done letting go of preconceived idea of what and why you child is reacting a certain way or doing certain things and doing a lot of observation and some formal documentation of what you observe. It is really important to educate yourself on both sensory issues and the Autism spectrum (like you do not have enough to do already).

If you are looking for a broader perspective of the autism spectrum (beyond “classic” autism) you might want to read Tony Atwood’s “The complete guide to Aspergers” C2007 available on Amazon for about $25. With all the unrelated issues and challenges that your twins have it may well be many years before you really know where and if they are on the spectrum.

I would call it a great success if they were able to do 3 rides.

For your DS8 just add an accommodation to his IEP that he has “flexible” amounts of time to take his tests along with any other supports that may be helpful.

I hope we can be of some support and help, please feel free to ask questions, there are lots of parents if children with a variety of challenges on this board so chances are someone has dealt with something similar with almost anything you could ask.

bookwormde

WOW! Thank you for all the information. I know we have a long road in front of us. We tend to research things we've been told they have, but maybe looking more into sensory issues/autism is our next step.

The 8 yr old does have an IEP for reading & math. I think the anxiety comes because he knows he is doing a different test than the others. He so wants to be doing the same work, but is just not there yet.

I will definately be asking questions as they arise....thank you sooooo much!!

Hi and welcome, My dd now 15 has pierre Robin syndrome, If you have any questions feel free to ask.
Kim

It's great to meet someone with a PRS kid.....especially older!! Curious on how she is doing & what we have to coming in the future. Not really sure if this is something they "kinda" grow out of....? Really haven't got much help from the medical here on what the future holds.

Hi! and Welcome!
I don't have any advice at the moment, other than to agree w/ what Bookwormde said. Is there any king of testing accomodation on his IEP or 504 that provides for additional time, frequent breaks, quiet area, etc.? These might help him with the anxiety.

Other than that, wow- sure looks like you have your hands full. I always thought we'd have a large family and hopefully adopt some, but after the two we have and their needs DH put his foot down. I'm so glad that you have each other to share the love and challenges these children present.

Thank you, I'm sure if you asked me if I would have more children when my kids were in high school I would have laughed.....but somehow they came into our lives & we just knew they were where they needed to be. It's like starting over again. I surely understand why we usually have our kids when we're younger.......we tire much easier now.

 

[mechurchlady]

http://www.pierrerobin.org/

http://www.aboutfaceusa.org/

The small lower jaw pushes the tongue back to block the airway. If the kids do have SID or autism then this could lead to sensory issues with eating. EArly surgery to correct the palate and facial deformities is the solution plus some kids out grow it when their jaw grows and catches up. If the kid does not catch up then surgery can be done to elongate the lower jaw. Speech therapy also may be needed to overcome the deformities.

I lived near a man and his kids who had something like this in that their jaw was way short and seemed to be under their upper lip. It was weird to see a whole family of people with such undershot jaws.

Kids are too often mislabeled. The monster child gets off of some allergens and becomes a model student and loving angel child. Is it ADD or aspergers or maybe allergies. I have many autistic qualities but actually I am SID not autistic but I seem to visit autismland a lot.

Time for me to nap and you to be hugged. Them kids are blessed to have you to care for them
Hugs
Laurie

 

[DizNee Luver]

http://www.pierrerobin.org/

http://www.aboutfaceusa.org/

The small lower jaw pushes the tongue back to block the airway. If the kids do have SID or autism then this could lead to sensory issues with eating. EArly surgery to correct the palate and facial deformities is the solution plus some kids out grow it when their jaw grows and catches up. If the kid does not catch up then surgery can be done to elongate the lower jaw. Speech therapy also may be needed to overcome the deformities.

I lived near a man and his kids who had something like this in that their jaw was way short and seemed to be under their upper lip. It was weird to see a whole family of people with such undershot jaws.

Kids are too often mislabeled. The monster child gets off of some allergens and becomes a model student and loving angel child. Is it ADD or aspergers or maybe allergies. I have many autistic qualities but actually I am SID not autistic but I seem to visit autismland a lot.

Time for me to nap and you to be hugged. Them kids are blessed to have you to care for them
Hugs
Laurie

Thank you for the websites. I have researched on the first one but didn't know about the 2nd site.
We've had the palate repaired last July & so far it's holding!! The jaw seems to be growing out & not near as noticeable as it was in the beginning. They've talked about the jaw distraction surgery, but decided it was not needed at that time. If she starts having issues with sleep apnea, then they'll have to look into it again. I really hope she continues to grow & they won't have to do that......it looks barbaric & it would be painful to watch her go thru that.

Hope you enjoyed your nap (I'm guessing you would have had it by now...) You're a great help!!!!!

We feel blessed to have them!!

 

[mechurchlady]

http://www.pierrerobin.org/links.htm
That is where I found the second link I think or off of one of those links.

Also you need to research cleft palate sites as there are few with Robin Pierre Section there are many dealing with facial deformities, cleft palates, as well as her other problems that she may face like SID and neurovariations.

http://www.sticklers.org/sip2/content/view/27/38/
About 30 t0 40% of Sticklers Syndrome persons have Robin Pierre Section. By looking at everything possible you will find people who have information.
This is the Know Your Rights page from the Stickler's group and applies to polio, arthritis, blind, deaf, CP, and other stuff not just to the Sticklers persons.

http://www.our-kids.org/
resources and some uplifting poems

http://www.our-kids.org/Archives/Holland.html
Welcome to Holland is inspirational analogy of what it is like to have a disabled child. I ended up going to Bulgaria so it feels. Read this as it is a bit funny and so true.

http://www.widesmiles.org/

http://www.cleftline.org/

Big hugs to you and Happy Easter
Laurie
I need a nap again and it is dinner time.

 

[DizNee Luver]

Thank you for the links Laurie!!!

After researching a bit on the Stickler's....I'm thinking this is not something they have.

We were told by the genetics doctor that right now he's looking at Opitz G-BBB.....but not sure that's exactly right. I looked it up & would have to say it covers quite a few of the "symptoms" the girls have......I'd also have to say, it possibly covers the other siblings as well. I'll need to pass that info on to the caseworker for the baby born in September that's in foster care. He's having kidney issues & that is actually one of the many symptoms of this.

Have a beautiful Easter!!

 

[mechurchlady]

The kids may not have Sticklers but still go there and see what other moms are going through with Sticklers as they have a high rate of Robin Pierre as well as some of the same things your kids have like the cleft palate. Even if you or the kids do not have a disorder or disease you can learn from that disorder or disease.

You are going to find that the kids fit many things and have to watch for that. I was just reading up on Fragile X Syndrome which at times is a lot like Autism. A doctor could just shove a kid into autism instead of seeing the FXS diagnosis. I do not have Autism or ODD but did learn a lot from both on how to handle my mother.

Good luck with the kids and Happy Easter to a great mom
hugs
Laurie