Discussion in 'The Watercooler' started by Hound dog, Jan 21, 2012.

  1. Hound dog

    Hound dog Nana's are Beautiful

    Autism is obviously a fairly dominant gene in husband's family. I've not met a male on that side who doesn't at least have strong traits of the disorder, an awful lot actually are on the spectrum somewhere, including grandchildren. Over the years I've learned to accept this a due course, I suppose, as it no longer bothers me. It's just something that *is*, like the red hair and fair complexion that keeps popping up.

    Alex showed strong signs from infancy. Along with other signs of Traumatic Brain Injury (TBI) that I recognized early on from Travis's babyhood, as well as knowing what normal infant development should be.

    Darrin has such strong traits that I wondered about him for quite a while, but I don't believe he's on the spectrum. He does well at socializing and picks up social cues easily.

    Brandon also has some traits, although you have to know what to look for to see them. He also does well with social cues ect and his is also just the traits. another matter all together. I don't need a degree to know Connor is on the spectrum, just that it will be a while before we know how well he functions. He's like having Travis again as a baby. (oddly enough I'm enjoying it) I suspect he may also be Pervasive Developmental Disorder (PDD), but with today's interventions it's very possible he may wind up higher functioning than that. I also suspect there is some Traumatic Brain Injury (TBI) issues going on.

    This upsets easy child and I hesitate to bring this stuff up to her, but as time has passed I do occasionally feel the need to say something. I understand it being upsetting from the Mom point of view, been there done that myself. She's always known there was the strong chance one of her boys could be on the spectrum, just as Nichole does. Still it can be hard to accept. I get that part too. The Traumatic Brain Injury (TBI) issues seem to be the hardest thing for her to discuss or accept the possibility of. Her pregnancy with Connor was difficult at best. She had major heart issues going on that were complicated with severe migraines, and was medicated for both.......which is not really a good thing for a developing baby. There just wasn't much choice.

    I dunno, maybe I should call them neurological issues, not Traumatic Brain Injury (TBI), but I've suspected a Traumatic Brain Injury (TBI) for a very long time, back in his early infancy. Connor's birth is the only grandchild's birth I didn't attend. (I was watching Brandon and Darrin) easy child and sister in law had never mentioned any issues with his birth and I'd always assumed it was normal without complications. Until I started seeing issues with Connor, similar to ones I dealt with with Travis and Alex. (and even bff's son who has CP) Many of these things are fairly subtle unless you know what to watch for and are easily missed.

    The biggest red flag for Traumatic Brain Injury (TBI) was Connor's crossed eyes. (due to memory issues I no longer know where the info came from that this is a red flag, I just know that it is, especially in infants)
    Well, it took some time and patience to get easy child to realize his eyes really were crossed. But he's also been lagging way behind in all large and fine motor skill development as well as verbal. He does/did the typical rigid back arch deal where it nearly makes you drop them, he head butts exactly like Travis although so far not as severe as Travis did (thank god), for months he used a sweeping arm/hand motion in an attempt to pick things up......I still see this motion although he can now pick things up with his fingers. When he feels something, omg does he "feel" it! Extremes there even though thankfully much of the time it doesn't last too long. Lots of sensory issues going on. (which can be a combo Traumatic Brain Injury (TBI) and spectrum related) Now don't get me wrong, he's a smart lil bugger. IF there is a Traumatic Brain Injury (TBI) issue, I don't believe it's affected his intellect as it did Alex.

    I had to press the point with the eyes because ignoring it affects a child's vision. easy child came around in fairly short order, it's just hard when you're with them all the time because you get used to such things. So, due to knowing that crossed eyes in infancy is a major red flag for Traumatic Brain Injury (TBI), I asked her about Connor's birth. Seems it wasn't as "normal" as I assumed, but since everything came out ok easy child didn't think much of it. During labor they had some concerning issues with his heart rate dropping too low, which reduces the amount of O2 delivered to the brain. Upon delivery his heart rate stabilized and all was well. What most people don't realize is that depending on the amount of time heart rate drops during labor, how low it goes, ect....can cause a Traumatic Brain Injury (TBI) and is considered traumatic birth, even though everything turned out ok. The amount of O2 deprivation will determine the amount of damage done to the brain.

    So when easy child told me about her labor with Connor my stomach sank. I don't believe I'm off the mark with the Traumatic Brain Injury (TBI), but I hope that I am. It's so hard to discuss with easy child, even with her being a nurse, as she tends to seem to take it as an affront to her parenting skills, which of course it isn't. She did take him to the MD pediatric eye doctor, confirmed the crossed eyes and will be returning in 6 wks to schedule his surgery for correction. So, at least he'll not have vision loss due to the crossed eyes. I'm still worried about the neuro issues I see. At the moment he's on track developmentally except maybe lagging a bit in language, although every once in a while he'll pop out with something like elephant clear as day. So I can like point to something and say see easy child, that indicates a neuro problem......except with the who rigid arching of the back thing. When I point out that he was way behind on all his developmental tasks, she says well Brandon was too. Yes, on some he was, but not like Connor, who just learned to walk. Brandon never did anything that set off Nana's neuro radar either. Except his speech, but that is because big bro likes to talk for him mostly.

    And.........I want to be just paranoid here. But I'm going to put it out there. Travis has the polycythemia, a rare blood disorder that causes him to produce too many blood cells, which causes clotting and strokes. Over his lifetime Travis has had TIAs which affected his vision/ neuro function....and then a large stroke at 18 which cause right sided facial droop. We can't know for absolute certain, but it's believed his had the condition since early toddlerhood at the very least, since every phlebotomist who's ever drawn blood from him has commented on his extremely thick blood. This is a genetic disorder. Travis HAS the gene. My girls carry the gene and are supposed to have their kids tested for the gene, especially the boys. For Travis to be diagnosed with polycythemia at 19 made him an extremely rare case, that it is fairly certain he's had the condition most of his life, makes it even more rare. As far as I know no one has ever heard of it showing up that early.

    Connor is (I know if easy child reads this she's gonna flip) an exact copy of Travis as a baby. When I say it's like having him all over again, I'm not exaggerating. I love him to pieces and I enjoy him and he's smart as a whip. But none of that changes the fact that when I look at him.....I worry because I think something major other than the crossed eyes has been missed and he's already over a year old. If he has neuro issues I want him in early intervention asap in hopes he does far better than his uncle. I want him tested for that gene so if more odd neuro issues pop up in the future docs won't poo poo it and take it seriously. Alex was similar to Travis. Bff's son was very similar to Travis. Conner is a carbon copy, right down to personality.

    I'm a person that subconsciously "reads" body language. It's a skill that was fine tuned during an abusive childhood as a survival thing. Because of this, I tend to really watch people's movements, posture, ect........and I pick up quickly when something is "off", even if I can't put my finger on exactly why it is off. It's taken me a long time to figure out how I can look at a person and just know something is wrong, but that is how. It's like how I learned to read lips, I never consciously learned, I just always focused on a person's mouth when they talked....and I do a pretty fine job of reading lips.

    So.........any ideas on how to discuss this with easy child without triggering Mom guilt (which I understand been there done that, but there is no reason for her to feel guilty) and making her defensive? I'd feel better if Connor was checked over well and had a MRI via Travis' old neuro who specializes in autism but does other neuro conditions too since they're commonly seen together. The quicker a diagnosis (if there is one, especially for the Traumatic Brain Injury (TBI)/neuro stuff) the quicker early intervention can become involved and start working with him and the higher chance of success for his future. Which is the only reason I'm sort of pushing the issue, as gently as I can, but I'm still "pushing" it somewhat.

    easy child is an awesome mom, sister in law is an awesome dad. This has nothing to do with that. I picked up on it due to my quirk with body language.......and the fact that I happen to have a LOT of experience dealing with these issues. Top it off, I'm not there 24/7 so things throw up red flags for me that seem normal to them just because they see it so much. With Travis I picked up on his issues quickly, but that doesn't mean I didn't doubt myself a lot.....especially when docs kept giving me the run around for so many years. I'd have loved for a more experienced person just ONCE to have said, yes I see what you see there IS a problem. Travis was 13 before that happened.

    Connor is his Nana's special lil man. Frankly, I adore the lil guy something fierce. I try hard not to have favorites, I love each of my kids as individuals and the same with the grands because they're all different. But Connor......I dunno, he's just special. I don't know how else to put it.

    I'm not sure if this is worrying out loud, a vent, or just sounding off. I just needed to get it out there.
  2. 1905

    1905 Well-Known Member

    Some parents are in total denial, even as as their 5-year-old child is is placed in a classroom with autistic children, and their child is even low-functioning in there. If easy child did agree with you right this minute, is there something she could change for him, like maybe services, or Occupational Therapist (OT), PT...something tangible that can be done? If not, let her be in denial, she just can't function with all the extra what if's, and worrying. She figures she'll cross that bridge if she comes to it. Maybe when a dr. tells her, or when she see's more signs than just a slower developing person.

    You know something. You do know it. If something can be fixed or changed, gather information and push her to take it to the dr. If it's nothing that can be fixed, gather information anyway, she wil need it. Write down names of conditions, find doctors who specialize in them, just to have- you don't have to give them to her.

    Don't force anything on her. She grew up with Travis, she knows. If he's not in danger, love that baby like she does and let her be in denial.

    Maybe you can go with her to a check-up and pick the doctors brain with her standing there.
  3. TeDo

    TeDo Guest

    Given all you've been through with Travis and the first-hand knowledge you have, it has to be hard to see it and NOT be listened to. I know it kills you not to say something but frankly, there's not much you can do. Do easy child, Travis, and Connor spend much time together. It might be easier to say things like "Hey, Travis used to do that." or "That reminds me of what Travis always did." Stuff like that when they are all together. It might be less threatening to easy child.

    I don't know what to tell you hon. I know it hurts like h*** but unless she can realize there is no guilt, that it is genetic, there is not much you can do without alienating her because she gets tired of hearing it. Many {{{HUGS}}} to you.
  4. Hound dog

    Hound dog Nana's are Beautiful

    If what I'm suspecting about the neuro issues is true, yes there are Occupational Therapist (OT) and PT programs available to address whatever issues he's having at the moment and may potentially have in the near and far future. Which is why I'm gently pushing the issue. If he reaches school age without any intervention, she can pretty much forget it. Our sd will write it into the IEP but that's as far as it ever gets. Here we have an early intervention program that is outstanding, if Connor needs any Occupational Therapist (OT) or PT that is the best place for him to get it.

    I guess I should be glad easy child is not in total denial. That would be harder still. I'm not sure if it IS denial per se, I think it's more of hoping the issues resolve themselves over time. The only problem is, time is a critical factor with neuro issues. The longer you wait, the less chance of success at improving function and skills.
  5. TeDo

    TeDo Guest

    I kind of know how she feels. difficult child 1 had delays (not as prominent as Connor's) but he always acquired the skills within a month or two of difficult child 2 (the ONLY kids I have to compare). I didn't see a problem and had no idea why anyone else was concerned at all. If I had known then what I know now, difficult child 1 might be in a much better place. I know she has Travis for comparison but maybe she doesn't realize that early intervention is available so that Connor can grow up "better" so to speak than Travis did. Know what I mean??
  6. crazymama30

    crazymama30 Active Member

    I would start by telling her why you think she and sister in law are good parents. Tell her how you wish you had known what to do for travis earlier. I would play on the polycythemia, it is medical and not behavioral. It is measurable and for sure answer. If you can get her to take connor to travis's neuro, maybe he would pick up on the autism.

    I think that our maternal (or grand maternal) instincts tell us which child is most vulnerable, and that child always holds a special place in our heart.
  7. Hound dog

    Hound dog Nana's are Beautiful

    TeDo, that is exactly what I do...................and that is how I know she's sensitive about the issue, by her reaction to it.

    I understand this is hard for her, probably better than anyone I understand that. It's not easy to adjust yourself to the fact that one of your children is not "normal", let alone that they might have some major issues going on. (I'm hoping they're fairly minor) It's a very scary thing, very. And while both my girls love their brother very much and accept him for who he is, growing up with him was not always easy by a long shot. So I'm sure that is a factor playing into it too.

    She's a smart girl. She's a great mom. I know easy child will get there on her own eventually. It's just hard to watch her working through the process. For me it's a 1+1=2 thing because of life experience. It's not the same for her.
  8. TeDo

    TeDo Guest

    Hound, I know it has to be hard for you having lived through it. And yes, I agree that she will get there on her own. I agree that maybe hearing things from the professionals will help her get there sooner. One can hope anyway. The other thing, for me at least, is hearing from your mother. That alone sometimes causes "issues". I am glad you have the type of relationship you do with her, and Conner. That is going to help immensely. When Connor is with you, you might want to use the things that worked with Travis to give Conner a slight edge. That is about all you can do for now. easy child will get there when she's ready and I really do appreciate how much you worry. It's hard KNOWING and being powerless to do the things you know NEED to be done.

    More {{{{HUGS}}}} to you hon.
  9. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Ahhh....I know how you feel. This is what I am going through with Jamie's kids. I know something is "off" with both of them and Jamie is with us on suspecting that Hailie could very possibly be on the ADHD/ODD or mood disorder spectrum but Billie isnt hearing any of it. None of them are hearing anything about Mikey.

    I am really hoping there is nothing wrong with this newest one because I dont think I could handle it. She already is showing signs of being something though. She is very fussy.
  10. susiestar

    susiestar Roll With It

    I don't agree to let her get to it on her own time. You are her mom. Can you sit her down with a cup of coffee or whatever and say, Honey, you know I am worried. I hope you know that I think you and sister in law are amazing parents. What I am worried about has NOTHING to do with your parenting and everything to do with me being a worrywart. If I made an appointment with Dr. Old Neuro for an evaluation, would you take Connor and let me come and talk to him? If he tells me there is nothing then I will be able to not worry. Until then, I worry a LOT. I just see a LOT that reminds me of what we went through with Travis and I am TERRIFIED that Dr. Old Neuro will be the only one who can find it just liek it was for Travis. I would NEVER forgive myself if I didn't BEG you to indulge me and get him tested. because if there IS a problem, then early help could mean long term very minimal problems and a normal life, but waiting could mean real problems and a lifetime of hard things FOR CONNOR.

    I know you are an amazing parent and that your kids could NOT have better parents. But I worry and cannot help it and have tried but I am just so scared that if Dr. Old Neuro isn't around then years might be wasted and Connor would be the one to pay. PLEASE indulge me, know that it is MY shortcomings in passing the genes on to you that has me worried, and I would feel I was a bad parent to you ad a bad Nana to Connor if I didn't BEG you for this. What can I do to get you to understand how scared I am and how I don't want him to suffer from not getting help early enough? I KNOW I am probably over-reactig and I ahve tried to let it go and wait and see. It is just eating at me. PLEASE???

    Maybe phrased this way would help her. The earlier he gets Occupational Therapist (OT) and PT the earlier the brain can learn new ways to hadle things. The earlier the polycythemia diagnosis ad treatment, the fewer TIAs from not being treated. Period. The goal is a great life for Connor. If begging her to allay YOUR FEARS will do it, then beg, I say.

    There were a couple of issues where my mom said something similar to me, and I used it on her when she REFUSED to accept that things had to be a bit different for Wiz like medications, not having ANY violent ANYTHING including no disney, no Power Rangers (she had a HUGE problem not going to McDonalds when they had Power Ranger toys. 10 different fast food places with kids meals and this was a HUGE deal and I flat out BEGGED her not to. I told her the last time I gave in to my aunt on it he high kicked Jessie right where she was in my belly TELLING me he was going to kick her out of me. THAT was what watching them did to him, or even playing with a PR toy at a friend's house did that. So we didn't do ANYTHING or go ANYWHERE that had them. And it was worth begging to not go through that.

    I just think making it about YOU being scared, YOU being worried that you caused this by passing on the gene, the old dr might retire and tehn you would feel you didn't do your best to help her raise him, this might make it easier for her. And since you ARE worried, scared, etc.... it is true. It is a spin, but it isn't a lie.
  11. InsaneCdn

    InsaneCdn Well-Known Member

    I'm kinda on Susie's page - but didn't know how to word it.
    Because there are interventions available, and because those will be critical if in fact he needs them, there needs to be some way to broach the subject without causing friction. Even if you have to "take the blame"... as in, with all the stress of the last year, maybe you're just "jumpy", but it would sure set your mind at ease if these things could at least be ruled out...
  12. susiestar

    susiestar Roll With It

    I think the "Old Dr. might retire soon, and we searched for YEARS before anyone listened about Travis" might be as convincing as any other part. easy child knows how much it meant to you when the doctor listened to you and then searched for the answers. Esp if she had any idea that some of his TIAs might have been avoided if he had been treated earlier. Sometimes getting something depends more on how you ask than on what you ask for.
  13. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Very true!

    I just got jumped on for "seeing problems under every rock" because we have McKenzie here tonight and I swear that she has something going on. She does that stretching the back thing you describe where she just arches back and screams like a banshee. She is so fussy about certain eating. She is almost 4 months old and she is still only drinking 4 oz's of formula at a time. By that age the boys were on 8 and Keyana was on 6. She isnt even attempting to sleep through the night but of course not with that little bit of formula in her bottle. Keyana was on 6 oz of formula by 3 months old and I was putting rice cereal in her nighttime bottle so she slept through the night at 3 mos old.

    McKenzie sort of plays with her nipples. I have bought several different ones to see if she likes one more than another and it doesnt seem to matter. She does the best with nuk ones but even that one she just rolls around and sucks limply.

    She does seem to have pretty darned good muscle tone though. She has been holding up her head since she was just a week or two old. She started trying to push up on her arms when on her tummy to look all around too quite early. Nowadays it seems all the babies I know hate being on the bellies for tummy time. Not her. She loves to lay on her belly but that is also how she likes to sleep. She wont go to sleep on her back if she can help it. Only time she will is if in her car seat or swing.

    I think she is going to be sensory something...either seeking or something and then she will either be adhd too because she is sooooo active.
  14. Hound dog

    Hound dog Nana's are Beautiful

    Janet.........sounds like somehow Mickey doesn't have the hang of svcking. Travis never learned after birth due to being in a coma for 10 days, they fed him via a tube. So once he was conscious, we had to teach him how to svck. He did that limp chewy thing too with the nipples. I don't think a nuk nipple would be firm enough to try what I'm gonna tell you..........But find a fairly firm nipple, when she goes limp sort of push the nipple up toward the roof of her mouth, it should start up the svcking again. (you might have to do it a couple of times to get her started, and mult times during bottle time) I had to do this for weeks and weeks with Travis until he finally had mastered svcking on the nipple. may be right that there are some neuro issues going on, be it sensory or otherwise.

    I'm not giving up on my lil Connor man, and I'll keep talking to easy child. In the meantime, I work with him cuz that's just what I do. I do it with any baby. A fav game of his right now is "playing faces" He makes an exaggerated expression (usually of suprise, sometimes anger) and Nana copes it and he laughs and repeats. lol I give him a bowl and spoon to play with so he can practice eating, and I know easy child does this too. I'm trying to get him to stop the biting's sensory related he does it when excited, happy, and mad......I've been redirecting it toward his favorite blankie instead of people. Now if we can just do something about his fascination with pulling his brothers hair..... I think it's because their hair is cut so short. lol
  15. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Oh Lisa I wanted to tell you about the coolest eating utensils I found on amazon last night. They look like little construction vehicles. Oh heck...let me go get the link. Constructive Eating Utensil Set: Toys & Games

    These things are just so adorable. They teach the little one to eat. Yes they are a tiny bit expensive but they also have a set in a pink garden set I plan on getting. I may even buy this one for Mikey. Valentines day is They use the pusher one to help push the food onto the fork or spoon instead of fingers. I think they have ingenious. Whoever came up with these is gonna make a mint.
  16. Hound dog

    Hound dog Nana's are Beautiful

    Those are just cool. lol
  17. susiestar

    susiestar Roll With It

    Even if McKenzie isn't being nursed, the La Leche league has some awesome info on this problem, Janet. Or they did wehn Jess was born. My problem was I couldn't get the person who helped me to grasp that Jess had that down FINE (10 oz bottles by 2 mos or she was super hungry in two hours! She didn't throw it up at all or have problems from that much formula) but she wanted NOTHING to do with nursing after about 2-3 weeks because she just needed so much food at a time. She had to work too hard to nurse, bottles gave it to her FAST and when she felt hunger it was extreme - like no other baby I have ever seen. You might check google to find their website.

    As for the cranky, try catnip tea if they will let you. It iwll help a LOT with digestive issues.
  18. Hound dog

    Hound dog Nana's are Beautiful

    That is the reason Nichole had to stop nursing Oliver so soon. She made plenty of milk to feed an army of babies.........he had no real trouble getting it, but he was ALWAYS starving. So it was have him constantly attached to her breast, or give him supplemental bottles........when she saw what he was taking with the supplemental bottles....she weaned him from nursing. He started cereal at 2 wks. He's been on baby food for a long time, started waaaaaay earlier than they usually do now. Formula alone didn't cut it for him.