Just Unloading a Bit

Discussion in 'Parent Emeritus' started by Hound dog, Jun 13, 2012.

  1. Hound dog

    Hound dog Nana's are Beautiful

    I'm so worried about my little Connor man that I can hardly stand it. I've never been so frustrated in my life. And really there is nothing I can do about it.

    easy child is a good Mom. She's a nurse. And to me, this only makes her denial of his issues worse. I can understand where she's coming from, I can totally understand her feelings because I've been there. But dammit, she's wasting in my opinion valuable time in which to get him help that could make an enormous difference in his life, his future.......and I get to the point where I just want to shake her until her head rattles.

    I'm so frustrated because every single time I attempt to discuss it with her, she seems to take it to heart that it's her parenting that I'm "attacking" or her personally. And that doesn't have a darn thing to do with it.

    C'mon. I've raised Travis, a brain injured child with autism. I helped get BFF's son diagnosed with cerebral palsy/autism. I spotted Alex's issues years and years before he ever got even an unofficial diagnosis. What easy child doesn't know, is that during Travis's childhood I've helped many other children receive similar dxes because their behaviors ect sent up red flags and I pointed their parents in the right direction to find the right specialist to get them diagnosed and help FAST so they could start Occupational Therapist (OT), PT, speech therapy, ect. I might not be a doctor, but this is something I know.....inside out and backward.......at least enough to say "hey, there are these red flags, this child needs evaluated." So far?? I'm batting 100 percent.

    What she doesn't seem to realize? Is that I hope and pray I"m totally wrong about Connor, but I know in my heart and in my head, I'm not wrong.

    I've been watching Connor since he was very young, only a few months old. Forever I kept my mouth shut, thinking for certain easy child would surely due to her own medical training and living with Travis and even after Alex, figure it out and spot the red flags on her own. When she didn't, I cautiously spoke up. My first main concern was that he was behind developmentally....and has lagged behind from the beginning, quite a bit behind. He was nearly 6 months old when he could roll over finally and he was late sitting up. I never thought he'd crawl.....but finally he did. Then walking.........walking he was like at least 15-16 months old. He's almost two and he still stumbles around and I watch and his steps aren't right. I can't tell you why they're not right, they just aren't. Connor at almost two can't get a spoon full of food to his mouth, he doesn't even seem to "get" the concept that the food goes onto the spoon and you put it into your own mouth. He eats fine when someone is feeding him and he'll eat with his hand.....no go with the spoon. He's still putting it in upside down when empty. He is only now starting to talk and while he will astound you with some of his words.....most of it is gibberish, but at least he's trying which is more than he was doing not that long ago.

    A huge red flag is that he doesn't understand the concept he should've had by 6-9 months that when you come to an edge (like a step) that you can fall. He'll just keep walking like it's still flat. I've finally got him holding my hand to go down steps but you've no idea how many times Nana has swallowed her heart trying to catch him as he just walked off the edge. This is a neuro thing. I had hoped it was a vision thing, depth perception, but he's had his surgery on his eyes long ago and the problem persist. You can see it in other areas of his play.

    I spotted at about 5 months or so that Connor's eyes were crossing, easy child would get upset and tell me I was seeing things not there and only stopped denying it when both eyes were basically planted on his nose.

    In an attempt to get her to understand what I was talking about, I took a wild stab in the dark. Connor and Evan are the only grandchildren that I didn't attend their birth. I knew nothing about what had gone on in her labor room. So I asked easy child if there were any issues with Connor's heart rate dropping during labor. (my gut told me there had to have been) She looked shocked and said yes, there were issues with his heart rate getting very low during labor and they made her wear the O2 mask, but that couldn't have been an issue because he was born and was fine. My heart sank. Because people just don't understand unless you have a brain injured child (and that injury occurred during birth) that it does not take much to cause a Traumatic Brain Injury (TBI) in a newborn. A decreased heart rate= decreased O2 to the newborn, which is why they made easy child wear the O2 mask. The resulting injury will vary depending on how long the O2 was decreased and to what extent. I explained this to her. Travis has cp because of this......not only did he have his heart rate decrease, but his heart stopped. Nichole also has a mild Traumatic Brain Injury (TBI) due to the same thing, neurologist is certain it's what caused her dyslexia because there is not a single person on either side of the family who has it and she has a severe form. Nichole's O2 issues were as bad as her brothers during labor but they were able to do the C section fast enough that not as much damage was done. Know what I mean??

    Connor is showing neuro red flags and with his birth history........that is NOT a good thing.

    My little man is also about as autistic as you can get without being full blown. I adore this child, you've no idea. He's like having a clone of Travis, yet in many ways he's worse. I don't know if this is because of compounding neuro issues or what. But Connor will be 2 in August and he does not at all act like a child about to turn 2 years old. I'd age him about 16 to 18 months tops and in some areas, that's pushing it. He's as sweet as he can be. But social is not his cup of tea. Only now does he like to crawl up into a lap for a little cuddling. He just recently learned to kiss someone and it's the sweetest thing in the world and it makes my heart soar. He was a major head banger..........and once in a while he'll still do it. He likes to take your hand and literally just walk and walk and walk and walk, around in circles in a room or the yard or whatever. He likes to touch cars (I mean my car, easy child's car) and hugs the tires......this can occupy him for extended periods of time. And he can rage like a champ like someone flipped a switch. Connor can't be consoled when injured or upset, he'll have no part of it.

    Autistic as heck, Travis at two could tell you his name, count to 10 plus, tell you his colors, say his alphabet. You'd have trouble understanding him because his tongue was basically stuck to the roof of his mouth. He was developmentally behind.........but yet at two, I pretty much saw a two year old.......it was after age 3 when his peers started soaring ahead of him by leaps and bounds. His development behind at this age was motor skills more than other skills. I think some of this was he had a burning desire to do everything easy child did.

    Connor plays "around" his brothers, not really with them most of the time. Although he likes to push trucks around with Brandon. He is learning to share and actually does better than Brandon in this area.....as long as he has something to play with, pretty much he's ok with it. It's that no interest in joining their play that throws up the red flag. Most of the time he's off doing his own thing.

    I've spent a lifetime watching children. I have basically the same medical training as easy child. I've raised my own two difficult children, one of them with a brain injury and autism. I'm not pointing out these things to easy child to criticize her as a parent in any way shape or form. I point them out because the younger Connor is when he's diagnosed the faster any therapies he needs can be put into place and his future could turn out to be vastly different than either his uncle or his cousin. That is my motivation. Because I love my grandson, ****, I utterly adore this little guy. He has his Nana's heart wrapped around his pinky finger because he's special. He's eyes.........they sparkle in wonder.....with I dunno, but they melt my heart. And while I watch him playing or whatever.......like tonight when I watched him playing his simple play or when he walked me laps around the yard.......I fought back tears of heartache.

    easy child has so much at her disposal that wasn't available for Travis as a child. I watched BFF's infant son who was paralyzed on one side of his body progress through developmental milestones with the aide of therapy that he would've never done without it. I watched that child, who would've been unable to speak and in a wheelchair, walk, talk, overcome his neuro sensory issues to become a profoundly different child by the time he went to preschool. He still had cp and was autistic, but omg the progress was utterly amazing!! And as an older child now? You'd never guess what he went through to get where he is now.......even if that isn't "normal". If the right therapy ect could do that for BFF's son, imagine how they could help Connor, the progress he could make.

    It makes me cry. I can't help it. It was so hard to raise Travis with no help whatsoever. I can only say that I think I had some guardian angel helping me do the right things at the right times because most of what I did for him was guessing. When Travis was discharged from the NICU there was no therapy at all given to a brain injured infant. I took what I knew from stroke patients and used it on him and worked with him every single day all day long. I turned Range of Motion exercises into games played at every single diaper change. I used to roll him around on the floor to teach him to roll over as a game. I used a mirror to motivate him to hold up his head to look at the baby. There were no OTs, not PTs. Speech therapy didn't start until kindergarden.

    What easy child doesn't know........because I've had periods of time watching the kids in between sitters and such .....I used some of these same things with Connor whenever I had the chance. I used them because he was behind and it worried me. easy child would tell me he was in "normal range" (which by the way varies depending on who you talk to, a pediatrician docs normal range doesn't match a neuro's normal range much of the time) and act like I was trying to find something wrong with him. So I'd keep my mouth shut and just do some of the things I used to do for Travis. I do them now, but she doesn't know. And I saw a kid who screamed bloody murder when put on the floor at like 5 months learn to like it and eventually learn to roll over.....later sit up.....later pull up.......and then walk. I'm not saying I did it all or whatever....but before I did the things I did with Travis there was little or no improvement.......after......there was. So whatever. And it's not like at that point I had him all the time, so someone else could've easily been encouraging him too in other ways.

    I think easy child is scared. Growing up with her brother was not easy. She knows parenting him was even harder. So I think maybe denial is much easier than admitting she's scared to have a special child.

    I have news for her. Nana is scared too. Nana sees a little boy who needs help and is not getting it, and the time when he can make enormous leaps and bounds in progress via therapy is quickly slipping away. Nana is scared because Travis was not born with crossed eyes (which is also a red flag for a Traumatic Brain Injury (TBI) by the way)......it was a gradual onset like Connor's. Anyone else see the pattern here? Because I'm not making it up. It's how I knew before easy child told me that here had been issues with Connor's labor. Nana is scared because her daughter is firmly buried in denial so Nana can't help either the daughter or her grandson.

    And I admit, I'm angry. I'm angry because all she has to do is ask the pediatrician doctor for an MRI. And because they've spent years working together and are actually good friends, he wouldn't hesitate to do it. But easy child won't ask. She'll come up with every lame excuse in the book instead. And I have to back off because she gets upset and takes it personally, which is not what I want. But that damn MRI, if it shows anything, can get him evaled by Early Intervention here by the best neuros in the area and all the therapy he could possibly need tailored to his needs and if there insurance wouldn't cover it, it would be FREE. (and yes, they'd evaluation for autism too)

    And it all gets tangled up, these lovely emotions, because I DO know how she feels. I know exactly what it feels like to think there might be something seriously wrong with your child, that he is not normal. I know what it's like to hold that toddler who is raging and you can't reach them and think OMG what am I going to do when he's older and bigger??!!

    I hope that if he ever gets that MRI that it shows nothing. I hope if he gets evaled properly by Early Intervention, that they say he doesn't need their services. She has no clue, because she has not raised a child with the issues her brother has, how with everything that I have I hope that I am dead wrong.

    Soooooooo. Instead of experience motherly advice, she gets the answer she wants to hear.......oh well maybe he'll do better as he gets older........or yes, he can do that now.......or yes, he's trying to talk isn't that great. Which is basically hot air. Because while those things might be true, it's not the point of what is going on in reality. I can't coach her on how to handle a full blown autistic rage when she refuses to admit he's autistic. I can't coach on how to help motor skills or speech whatever when she refuses to admit there is a problem.

    Which is why while I watch his sensory issues with Maggie, or as I walk laps with him, or as I watch him discover the baby reflection in the shine of my car and keep looking under it trying to find the baby, or hugging my tires, or stuck in the open/shut door stage, or try to walk off the top step of my porch because he forgot to hold my hand.......my heart just hurts.

    So I do what I can on the days I have him. I have a thing I do that most times works to ease him out of a full blown rage. I strongly urge him to use his words and engage him in speech. I keep putting his food on his spoon and putting it into his hand and try to get him to put it into his mouth no matter how huge a mess it makes. I offer him a cup that he has to tilt to get the water from to drink and don't care if it gets spilled on the floor or whatever. I repeat colors and counting with both him and Brandon. (this is just a normal thing I do, nothing special there) I encourage him to join in group play.

    And I'll say, I enjoy every moment I spend with him. He truly is a gift from God. He has that special spark in his eye that Travis had as a young child, and it zings me right through to my soul.

    I dunno what else I can do. Even unloading here, I risk easy child reading it and getting extremely upset. But I don't know what else to do. I made the mistake of venting to Nichole on some of it.....who brought it to easy child's attention and that went over like a lead balloon. But I wanted to see if I was the only one seeing issues. And since Nichole isn't around Connor much.....she'd pick up on things we miss because we're always around him and it seems "normal".

    Nichole knows that Aubrey was severely delayed in all her large motor skills and in speech. At the time she was so young she accepted the pediatrician docs assurances that Aubrey would grow out of it she was fine. Despite the fact that Nana had to start teaching Aubrey sign language to stop rages because she had no words with which to communicate even basic needs. (seriously?) But now.....with Oliver.........Nichole sees just how delayed Aubrey really was, even given the normal variances with children. And she realizes that Aubrey should have been evaled to see if there was something wrong. That the pediatrician doctor dropped the ball. (same pediatrician doctor easy child uses by the way)

    Connor is the one going to lose in this situation. Which is horrible when there are so many services to help him that were not there for Travis. And I'm sorry, but that IS hard to know and to just go on pretending nothing is wrong. Even when you understand the reasons why, maybe more so than the person going through it.
     
  2. Liahona

    Liahona Guest

    I'm so sorry. I don't have an answer. I can tell you what woke us up to difficult child 2's Autism Spectrum Disorders (ASD). We took him to see the autism specialist to shut up our pediatrician who for a YEAR badgered us that difficult child 2 was autistic. We got a big surprise after only 5 min she told us that difficult child 2 was very autistic and backed up her observations with many specific examples from just the 5 min he was in her office. That was probably a frustrating year for our pediatrician. I don't know if easy child will come around. Maybe asking her to take him in for the MRI and if, hopefully, nothing is wrong than you won't say another word about an MRI? I'm sorry this hurts. I wish I was there to hug you and have a shoulder for you to cry on and safe person for you to vent to.
     
  3. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Lisa it almost sounds like you could have been posting about mikey too. Jamies son. Im sure you remember me talking about how slow he was to talk but he was slower in all the other milestones too and now at almost three he is still very hard to understand. None of my grandkids have walked before a year. Hailie was the closest and she walked at 12 months. Keyana walked the weekend we went up for Hailie's birth so she was 13 months. Mikey was around 14/15 months. I do have a feeling Mickey is going to be a bit more active but not sure. She is almost 9 months old and still not crawling or pulling up on furniture as far as I know. At this age everyone of my boys was at least cruising the furniture and both Cory and Jamie were actually walking without holding on. Jamie walked at 7 months alone.

    I think we may be doing our kids a disservice these days by holding them too much and keeping them in all these fancy gadgets to keep them entertained. I know Keyana was perfectly happy to sit in her bouncy chair in front of the TV and watch Football and NASCAR for hours on end. As long as she could see those shows on, she would be happy and just giggle and turn to look at me laugh and point.

    But back to Mikey...he would walk in circles around their bottom floor when he finally learned to walk and never talked. He would grunt. He didnt know fear. It scared me to death because he would walk right out in front of traffic, walk away from the house, walk off the top of the stairs and just fall down and think it was fun, get into drawers and no one thought it was dangerous. I was constantly on alert when there.

    Then there was Hailie who I am convinced has some other issues. But no one listens. According to Billie...her doctor says what the kids do is perfectly normal. Well what she probably tells the doctor sounds normal. She isnt telling the doctor that the child masturbates for days and days on end and refuses to wear clothes, tries to touch other little kids, constantly talks about private parts, tries to "love" on her brother but is really hurting him, has cussed like a sailor since she could talk. And mean...oh boy is she mean. I think Jamie got both kids with issues. If Corys kids have any issues they may be just slight things with learning difficulties and that we can deal with more easily.
     
  4. InsaneCdn

    InsaneCdn Well-Known Member

    Lisa... {{hugs}}
    No advice, really, but... when we went through years and years and years of trying to get help, and I kept getting more and more in a corner because way too much time had already gone by and... at what point is it too late? An old connection, now working at the premier early-childhood intervention centre for kids with Autism Spectrum Disorders (ASD) here, told me:

    "It is NEVER too late... and sometimes too soon."
    Used to be that they believed that if some things were not caught by age 2, or age 5, or whatever... that it was "too late"... but over and over again, they are proving that there IS time... time to get the diagnosis, time for the parent to work through this whole thing psychologically, time to turn things around...

    Yes, he is 2. Yes, the pediatrician may be saying he's hitting the milestones when the kid is consistently doing so at the absolutely last possible minute (been there done that with-o Autism Spectrum Disorders (ASD)...). But... because Occupational Therapist (OT), "12 years too late", and SLT "10 years too late" are having a massive impact on a kid almost old enough to drive, because parent-only gut-feel intervention had enough impact to make a major difference, ... I'm starting to understand.

    Just keep doing what you're doing. It won't take THAT long, and someone else will clue in, or easy child will clue in. Meanwhile, you're bridging the gap far better than you know.

    Very interesting point about heart rate during labour... difficult child's dipped "just slightly" (per the obgyn at the time), but enough that they wanted me on oxygen... and I've always wondered if that wasn't one of the factors in difficult child's problems, but every doctor has always said not a chance...
     
  5. hearts and roses

    hearts and roses Mind Reader

    Lisa, your heartbreak comes through loud and clear, breaks my heart too. It's unfortunate that easy child won't listen to you at all...you'd think watching you with Travis all her life would make her more open to at least checking it out with Connor. Like IC said, keep doing what you're doing. Some impact is better than no impact and I'm certain that Connors exposure to you is helping.

    difficult child has spoken to me multiple times about E's youngest son. He's a cutie, he is 9 and has many issues, including vision and hearing. He was a preemie and literally bounces off the walls and all objects and is LOUD. But still lovable. His mom is a whacko and difficult child tries to have some kind of impact on him when he's with E and her, but they only get the boys once a week. She even encouraged E to go to the school to get copies of his records so difficult child could see if he's been evaluated or has any special services-E didn't have a clue. She hates that they spend so much time redirecting and reprimanding this little boy the entire time he's with them but his mom deliberately omits his medications on that day!

    I think if easy child had a special difficult child it would be difficult to speak with her about it. She's always sort of behaved superior because she was a easy child and not a difficult child, absolutely abhorring difficult child's meltdowns and impulsive behavior, I bet it would be difficult for her to admit or acknowledge that she had given birth to a difficult child, Know what I mean?? Could that be part of your pcs issue?

    Hugs, Nana.
     
  6. JJJ

    JJJ Active Member

    (((hugs))) I wish I knew the magic words to get easy child to listen to you. I am having the same difficulty with my sister. My niece shows major signs of Autism Spectrum Disorders (ASD), my sister is a nurse, yet she won't have her evaluated.

    Our school district pushes pre-school evaluations very hard so that almost everyone takes their 3 year old to the screening. It is seen as a very social event. While they spend most of their time screening perfectly healthy kids, it does allow them to catch some of the ones that would have slipped through until kindergarten or 1st grade. Do your schools do something similar?
     
  7. Hound dog

    Hound dog Nana's are Beautiful

    Janet I remember that post about Mikey and it threw up red flags for me too. Unfortunately in his case, you've got it also complicated by the fact that his Mom stinks as a parent on top of it. And I think Billie will never admit there is a problem because she knows she's not doing right by either kid parenting wise. Know what I mean??

    IC, I know that. But the difference between catching them young and having the same therapies as an older child is astounding. Travis was 15 before I found a doctor that would openly admit the relationship of decreased heart rate during labor and Traumatic Brain Injury (TBI). It wasn't just that neuro, I've found a few more really good ones who will also admit it. But you have to know how to ask. AND you have to keep in mind that for ages cerebral palsy was believed to be genetic as it tending to appear to run in families. Well, it sort of does......but that is usually because the mom or female relatives will have the same body build to make passage through the birth canal difficult. It's why my girls OB induced labor before their due dates to keep the babies small. (my girls are no bigger than me and we're all under 5 feet) Connor was her largest baby at 8 lbs. Travis was also 8 lbs. (Connor was measured smaller on the US) But as of oh I dunno, about 10-15 yrs ago, they've come to realize that cerebral palsy (even very mild forms) is not genetic, it's caused by traumatic birth injury, as in decreased O2 levels during labor and delivery. Which stands to reason why I didn't really hear anything about it until Travis was much older.

    Our preschools don't screen for squat.

    And Jo, yes.........some of it is easy child's issue with the need to be "perfect". It's an unconscious need driven by the way her brother was. Even that I can understand. It's very hard and very complicated growing up with a special needs/disabled sibling with Travis' issues. Most likely there is some Mom guilt going on there too, because it's just what we Mom's do when there is something wrong with our kid.......and low O2 wasn't the only thing going on with Connor. His was the pregnancy easy child had so many heart issues with that she had to take heart medications ect while preggers even though it wasn't good for Connor for her to do so. Could be that made matters worse. Then again, it might not have played a role at all. Impossible to tell at this point. But even that wasn't easy child's fault....I mean you can't give birth if you're not around to do so. sheesh. Sometimes you have to do what you have to do and let the chips fall. Doesn't make it her fault.

    I'm pretty sure I've told her a few times to just get the MRI and prove me wrong. If it was wrong, I'd at least be relieved we weren't dealing with neuro issues on top of autism. But she'll say Oh, Mom you've seen autism in all my boys. Well, yeah, I have. Because both Darrin and Brandon have strong traits. I've watched them both for a long time, and IF with the remote chance they have it, it's extremely high functioning. But I've told her more than once they just have the traits. ALL the grandsons do. Even Oliver has started developing a trait or two. Not surprising with evidently it's a very strong gene in the gene pool on husband's side. Traits and having the disorder are not the same thing. And Connor is in the middle / lower range right now. Huge difference.

    Just really upsets me we can't have a sit down objective discussion about Connor without her nose diving into denial mode. I only see Connor a few days a week. I'm certain there are lots of things she sees and experiences with him that I don't. I have experience from Travis to draw upon, which can/does avoid a lot of issues at the get go. So I'm betting I'm not seeing as much as she does, if she chose to be objective about it.

    As for Aubrey, you'd never know she had an issue with development. Which is fantastic. She's not only caught up, she's passed her peers. But Nichole still watches for red flags, just in case another issue crops up as she ages and school gets harder and deals with more complicated concepts. Aubrey may never have anymore issues that throw up red flags or cause her problems. But that doesn't mean that the pediatrician doctor didn't drop the ball in a huge way in her case. It just means she was a lucky kid that whatever was causing her issues was not a serious neuro problem. We're still watching her for dyslexia too. Which is complicated because Nichole's is so severe she gets her opposites mixed up, which makes it difficult to teach your kid their opposites correctly even when you're trying hard to do so. Aubrey mixes hers up too like her mom, but due to her reading so well......I think it's because her mom says them all backward, and not dyslexia.

    It's just weird that I can have sound objective discussions with my difficult child daughter about such things, but the easy child daughter with the medical training is the one in denial.:sigh: You'd think it would be the other way around.

    It did help to open up here and just let it pour out. And I'll keep right on helping Connor as much as I can, because much of what I do is automatic.......so ingrained in me now I just do it without a whole lot of thought and adjust it to fit a child's needs. I do some with Brandon for different reasons, as he's lagging a bit for different reasons.....but he's catching up pretty darn quickly now. His main issue is being the middle child, can't decide if he wants to be big like darrin or a baby like Connor. Hmm. I need to stop referring to Connor as a baby. Someone who will be 2 in 2 months is not a baby.

    I just hope easy child wakes up soon. By the time Travis' issues were caught, they were basically set in stone. We tried Occupational Therapist (OT) and PT for areas I didn't have a clue how to help, and neither worked. They remain issues. Maybe they would have even if it had been caught early.......but we'll never know.
     
  8. buddy

    buddy New Member

    So sorry you have that worry, poor little Connor. I agree, you are in his life for a reason and he is benefiting from your input. When they are so little short doctor. visits just dont reveal much and she seems too in denial to really tell all of the issues, but if he has that many issues, it will be much more obvious at 3...when you really can't just say it is a little delay...for all of those kinds of things. The preoccupation with parts of cars, the walking around and around, all the other issues...I bet you are right no, but sure hope it is not so. I doubt she is not listening to you. Probably just defensive and scared. I wonder if privately though you have helped her to be on the lookout.

    So sad that there is no early childhood screening...that is part of child find. (One of my favorite times of the year...so fun to screen all those kiddos) and it is designed to over catch kids...(a screening usually is)... to refer for a true evaluation. Around here you get a notice at the time because it is based on birth certificates. Would be so good when the time comes for that to happen for connor.
     
  9. cubsgirl

    cubsgirl Well-Known Member

    I'm so sorry you are so worried about your grandbaby! When difficult child was little I was in denial about his issues at first but my pediatrician set me straight at his 1 year check-up that something wasn't right. It's unfortunate Connor's pediatrician doesn't do the same thing. Unfortunately we cannot make another person do something they don't want to do. I hope your easy child comes around soon - early intervention can make such a huge difference. ((hugs))
     
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