Raising Chickens and Special Needs Kids

[mekidsmom]

Prayers for Kendra please? I'm posting this wherever I can to get a prayer chain going for Kendra...thanks!

The kids just left for Denver this morning. I've got Katie and Evan for the next week. Kendra will be having her 6 month regular Spina Bifida clinic, then she has appointments for Autism screening. That's more a formality - we already know she's on the autisim spectrum so nothing they say will really surprise us.

Then for the first time they'll be meeting with the surgical team about her Ace/Mitrofanoff procedure. They'll do a more in-depth series of exams than just her usual ultrasounds and MRI, and make the final determination about her candidacy and possible surgical date. Jenny and I will end up down in Denver when they do it, and we'll likely be down there for about a month - not looking forward to that but we've done it before, we can do it again. I just hope this works to help give Kendra a more normal life. This is a short thing about the process and the prognosis. From what I understand, when it works it works great, when it doesn't it's a disaster.

So asking for prayers for a safe journey both there and back, and good results for Kendra! Thanks!

http://www.coloradourologists.com/pedia ... fanoff.htm

I'm not much of a pray-er, but I will most certainly keep the family and Kendra in my happy thoughts for a safe journey and good results!!! Let us know how things turn out, please.

 

[Blooie]

Thanks! I'll take good thoughts for them too!

 

[Cynthia12]

Thanks for the welcome Cynthia! Richard looks so happy to be visiting! Gah, how did you ever manage to let him leave and live without you taking care of him daily? I can't imagine... but I so WANT Katie to be able to someday. At the moment though, she is still planning to leave when she's 16 and turns into a mermaid.

We'll see how that works out for her.

Trust me, it was very hard! But, he was old enough to decide..so off he went. Did well for a while with no health problems. Made me happy. Went to college for a while, then worked too. I couldn't believe how well he was doing. He was doing more of his own care at the time anyway. All I did was help after a surgery at this point. He did try to drive. Once he was out in that car with the teacher .. in the big city...he got in the car with me to head home and said...no way, this isn't for me! He takes the city buses, and a trax to Salt Lake City to get around. Or, he just wheels up to the store, when there is no snow on the ground.

Blooie, prayers for your sweetheart. Hope and pray that all goes well. I remember Richard going through so many cystocopies. He never had anything done. Well, he did have to have surgery when 5 yrs. old..because he had two ureters going from the kidney to the bladder at the wrong angle..which by the way, anyone can be born with, either straight, which will be fine in most cases, or at an angle, which can cause problems. Well, he was ok as far as the docs were concerned, until, he got a pseudomonas infection because of it. Then, he had the ureters replanted in the right angle. No reason to take one away. Just put in the new angle. The dr. had said that he may possibly need the surgery again..but it has stuck!

 

[Blooie]

Thanks, Cynthia! Not hearing from the kids is about killing me at this point, but I don't want to call them because I don't know if they're in testing with her, or talking to doctors or what. We did get some news yesterday at the Autism clinic that, in some ways, threw us for a loop and yet I think we all feared there was more to her issues than just the Autism. On most of the tests, she scored so low to the comparative group that her results weren't even on the chart. They didn't register at all. On a couple of things she was almost in the middle of "norm" but they have officially diagnosed her as "intellectually disabled". A few years ago that was known as "developmentally disabled" and a few years earlier it was "mentally retarded." Bit of a blow. The doctors did say that that was based on testing "on the day" and on another day she might have done better, or might have done worse. They also said that as we continue to work with her, and they retest her next year, some of those scores might go up.

 

[Cynthia12]

Well, that is disheartening news. She is so blessed to be soo loved. Yes, I have a sis that I still say..mentally handicapped. Not retarded. Glad that one is not used anymore.
I remember those clinic days. Ours was always on a Friday. Spent so much time in the children's hospital..for yrs. At least .. at least, once a yr. for surgeries for quite a few yrs. Then going back for the follow ups..then the clinic days.

 

[Jessimom]

Hi, I am going to find a quiet evening to go back and read all the posts here. Just a few made me cry. I am mom to a BEAUTIFUL little girl that has special needs. We don't have a reason for why. Maybe a fever I had when I was pregnant. She is on the autism spectrum, slight CP, definite learning disabilities. She didn't start talking verbally until she was 12, but when she was 6 she started using American Sign Language. She wasn't potty trained fully until she was 8. She is 16 now - wow time sure flies.

She had a MAJOR delay when she was little in interpreting sensations. For example, when she was 2, we saw her slam a sliding glass door on her hand (within 72 hours slider was gone, french doors put in). After slamming the door on her hand, she crawled over to some toys, started playing, and about 2 minutes later started SCREAMING. It took that long for the pain sensation to reach her brain, and have her brain send out the message that OUCH, that hurt. Unless we SAW something happen to her, we would have no way of knowing what happened, or why she was screaming, Made things interesting. Thankfully that isn't an issue anymore.

She ADORES watching the chicks hatch. Loves watching the babies in the incubator. Once they move out to the brooder, she loses all interest. Loves looking at pictures of them, but doesn't care about going to see them or care for them. She will help us feed the cats, feed the dog and feed the fish, but not the chickens.

She loves having the dog sit with her all day, but at bed time, the dog has to leave the room. We don't know why. She has to have a cat on the bed with her before she can sleep. That doesn't always work out perfectly.

She is unique, and the love of my life! She has made me look at life differently. I am a happier person.

 

[Jessimom]

Thanks, Cynthia! Not hearing from the kids is about killing me at this point, but I don't want to call them because I don't know if they're in testing with her, or talking to doctors or what. We did get some news yesterday at the Autism clinic that, in some ways, threw us for a loop and yet I think we all feared there was more to her issues than just the Autism. On most of the tests, she scored so low to the comparative group that her results weren't even on the chart. They didn't register at all. On a couple of things she was almost in the middle of "norm" but they have officially diagnosed her as "intellectually disabled". A few years ago that was known as "developmentally disabled" and a few years earlier it was "mentally retarded." Bit of a blow. The doctors did say that that was based on testing "on the day" and on another day she might have done better, or might have done worse. They also said that as we continue to work with her, and they retest her next year, some of those scores might go up.

I hate the labels!! But I know that the label doesn't really define the child. But unfortunately, sometimes the stronger the diagnosis, the better care the child receives. I sincerely hope that you only hear good news from the kids.

 

[Cynthia12]

Hi, I am going to find a quiet evening to go back and read all the posts here. Just a few made me cry. I am mom to a BEAUTIFUL little girl that has special needs. We don't have a reason for why. Maybe a fever I had when I was pregnant. She is on the autism spectrum, slight CP, definite learning disabilities. She didn't start talking verbally until she was 12, but when she was 6 she started using American Sign Language. She wasn't potty trained fully until she was 8. She is 16 now - wow time sure flies.

She had a MAJOR delay when she was little in interpreting sensations. For example, when she was 2, we saw her slam a sliding glass door on her hand (within 72 hours slider was gone, french doors put in). After slamming the door on her hand, she crawled over to some toys, started playing, and about 2 minutes later started SCREAMING. It took that long for the pain sensation to reach her brain, and have her brain send out the message that OUCH, that hurt. Unless we SAW something happen to her, we would have no way of knowing what happened, or why she was screaming, Made things interesting. Thankfully that isn't an issue anymore.

She ADORES watching the chicks hatch. Loves watching the babies in the incubator. Once they move out to the brooder, she loses all interest. Loves looking at pictures of them, but doesn't care about going to see them or care for them. She will help us feed the cats, feed the dog and feed the fish, but not the chickens.

She loves having the dog sit with her all day, but at bed time, the dog has to leave the room. We don't know why. She has to have a cat on the bed with her before she can sleep. That doesn't always work out perfectly.

She is unique, and the love of my life! She has made me look at life differently. I am a happier person.

Welcome! Glad you found this thread.

So, she is 16, time does go by doesn't it? Sounds like you have already been through a lot, and have conquered a lot. Having these special children really is a blessing. I would never have thought that I could do something like this..my mother did..I watched, I helped. I took my little sis and my mother to this very Children's hospital, saw these children walking with crutches, walkers, or in a chair. .. never knew what they had..never knew that I would have a child with this birth defect and someday be coming here ... often. All I would think was, what little cuties they were, and how amazed I was with how the parents were with these children. How loved these children were, and thus, how blessed these children were to have these amazing parents.

When my son was born, there were two drs. there to visit with me after his birth. The neuro was actually there, and a pediatric dr. was there. I was lucky to have them there..well, one at least. The neuro went down a looong list of what my child's outcome could be. He could have a heart problem. He would probably not walk. He would probably have learning disabilities. He would probably have many many surgeries for this that and another thing by the time he was 14, and he went down the list of what they could be for. I couldn't believe how he ended up his little talk. So, he asks...should we do the surgery or not? Meaning, or, should we let him die. I immediately said, I heard my baby cry! He sounded just like my others that I had. Normal. Then I asked, will he be able to sit up? The pediatric dr. stepped right in and said, oh yes, he is only paralyzed from the waist down going by where the opening is. I just looked at my husband standing there beside me on the other side of the bed. Then said, if he is meant to live he will, the Lord will bring him through this. Well, then, the neuro says, well, give me some credit won't you? I wasn't in the mood for light conversation, as far as I was concerned, this man was serious. We decided we wanted our baby to live. What a crazy night. What a crazy first few yrs. Then I just got used to it. Figured out how to get things ready pretty quick when it was time for another surgery, and some time spent with our son. Glad we did. What a blessing it has been, as you well know, in so many different ways. Tough, yes. Rewarding, yes! Aren't we just right out proud of our children when they make progress with something? Or something gets better? To see that smile on their faces when they know they have done something right?

Like I said, glad you are here. I'm sure Blooie will be happy to hear more of what you have been through since her granddaughter has some autism also.
Sharing is a good thing to be able to do with others that can understand. Wondering if you ever went to parent/child meetings with others that had children with the same problems.

 

[Blooie]

Welcome @Jessimom So glad to have you join us. I've been in better moods, so if I seem a little grouchy today I hope you'll grit your teeth and look past it. Have you read the article I wrote on chickens and kids with disabilities?

https://www.backyardchickens.com/a/kids-with-disabilities-can-enjoy-chickens-too

Here's a link just in case. Kendra's older sister has Autism and so does Kendra. We knew that. We just weren't prepared to her her referred to as "mentally retarded" and I don't care what politically correct label they choose to put on it take the sting out - it is what it is. I wish they'd test these kids on what they CAN do, rather than give them a pass or fail on stuff they expect them to do.

Example of one of the tests: They had her in a little mock up of a kitchen - everything kid sized. They had her sit at the table and they gave her a little dish of ice cream but no spoon. She was supposed to know what piece of the "puzzle" was missing and ask for it. She knows and can name the chair, the table, the bowl, the ice cream, the color of the bowl...all of that. But that wasn't the test. She looked at her ice cream, got down, crawled over to the drawer, opened it and pulled out a spoon, crawled back to the table, got back up, and ate her ice cream. She even said, "Delicious." But she failed the test because it wasn't done their way. No credit for problem solving, self-reliance, or reaction. She didn't ask for a spoon. Gasp, shudder! Yeah, like that.

She knows all of her colors, shapes, numbers 0 to 30, every letter of the alpabet - out of order and in dozens of different fonts - can read simple words. She was the only kid in her preschool to be able to identify her first and last name on cards put on the floor at random with all the other kids' first and last names and pick hers up, then put them in the bin. She knows the names of any animal you can show her. Every time she learns a new one we buy one and put it in her basket. They are those little ones you see in displays at feed stores. Her basket is overflowing. She can see a musical instrument and tell you what it is....even more astounding she can hear an instrument and correctly identify it. When the clock chimes 10 she brings in a catheter from her drawer in the living room and says, "Cath time". She calls enema time "booty duty" and knows what it is. But none of that stuff is on their precious list. 3 doctors in there and not one could look past his/her professors and textbooks and see what she has. They saw NONE of that, nor did she have any opportunity to show them herself what she knows. They couldn't make their precious checkmarks so she got a new label. It was like, "Here you go, Kendra. You are a Spina Bifida child with scoliosis, torqued shins, bad hips, seizures, hydrocephalus, hyperaccusis, autism, urinary incontinence and bowel control issues. Your new additional label is 'intellectually disabled'. Now go out there and make your way in a world that doesn't know how to deal with you."

Not on my watch! Not while I have a breath in my body. And definitely not when she is always so eager to learn as much as she can about everything.

 

[3goodeggs]

I sent you a PM.