Special Needs

I don't know if I still really "belong" here . . .

But I wanted to say that I still lurk (and occasionally post about brain stuff) and you guys are are still my favorite ladies on here - I hope it is ok I post.  I could use a little support and you guys are the only ones that might get this stuff.  Carson is starting pre-school on Monday and I am a little nervous.  He is really small and can be shy and I am worried he won't communicate to his new teacher.  I just don't want him to have a bunch of accidents or be upset or scared.  I am also choosing not to tell his teachers about his brain injury.  His neuro suggested this.  I agree on the one hand, because I don't want them to let him get away with stuff or go easy on him, but on the other hand, I want them to understand him.   

I am also recently having some moments where I feel a lot of anxiety and even some flashback type moments to the NICU.  WTF??  This is not something I can tell anyone really, since my husband wont get it and none of my friends have ever had an experience like that, so I fear I will sound insane or like I am just being dramatic. I am handling it ok, but I don't understand why this has not worked out by now.  Carson is doing so amazingly well, and I feel like I should not have this business happening any longer.  And honestly, I feel like I don't deserve to feel that stuff, since he is better.  And now I feel crazy.

Thanks for letting me vent.

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Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

Re: I don't know if I still really "belong" here . . .

  • My girls are 3 & 4 and sometimes I have extreme anxiety over them in situations that really shouldn't make a mom anxiety ridden.  I try to just shove it back down, I know I wouldn't want to medicate for it and I dont have the time to talk it out in therapy right now.  It's just something I try to deal with, when it happens and talk myself through the exact situation that seems to be causing the anxiety for me.  
    So, you're not alone in that aspect at all!  Hope he has an excellent First Day of Preschool!!
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • Princess_LilyPrincess_Lily member
    edited March 2014
    I think anxiety is one of the most natural feelings when your a mother.

    Our children rely on us to make the best decisions possible for their well being; sometimes we are right and sometimes we're wrong, and even when we're right we may think think we're wrong...right? Lol. Its the hardest, most demanding jobs - yet its also most gratifying and rewarding jobs we will ever have IMO.

    GL in preschool :D. Stay and hang with us! Heck I don't know on what forum I belong, but I know that this is the best "fit" for my family...this and my BM board. The ladies here are supportive of each other...its wonderful.

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  • Thanks ladies!  You guys are the best!  Auntie - I am super torn about sharing.  Maybe I will give it a few weeks and see how it goes.  His neuro is awesome - and I think she feels any of his issues will be minor and telling may cause them to treat him differently than they should.  

    I did meds for myself right after he was born, and then got off of them and was fine, but recently I have those old feelings again.  Maybe it is all the upcoming change.  We also did just get some borderline "wait and see type" bad news about his kidneys, so that is probably contributing to me being a crazy lady.

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    Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

  • I think you would be safe waiting out telling them for a couple of weeks and just seeing how it goes. You can always tell them when it becomes necessary.  What are your reasons for withholding and giving the information?

    DS2 did not like pre-k when he first started. I don't blame him as I found out some things about that classroom (there was an abrupt teacher change at one point) but he LOVES it this year (same class).
  • Fredalina - I think that is my fear.  There is no way to say "brain injury" without people imagining all kinds of cognitive issues that may not apply to him.  

    Auntie - his neuro does not know anything about his preschool, so it is just her general opinion, I guess.  I had not thought of them being upset I withheld information.  I will have to consider that.

    Max - We are lucky that he she sees his new teacher every morning and afternoon when we drop off and pick up our oldest and so he is familiar with her.  He is excited to be in her class (different from his brother's class).  Hopefully this will help him get over any anxiety over going to a new place.  But I do worry about going from an in-home daycare with a really small group to him feeling overwhelmed in a new place with a lot of kids.  

    Thanks again ladies.  This is all making me feeling better.  
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    Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

  • HUGS, mama! As a teacher, I agree with the doctor. Don't tell the teacher. Let them assess him with no preset standards. After 2-4 weeks, ask for a conference (unless the teacher requests one before that) to discuss how he is doing in class. *THIS IS IMPORTANT.* Ask the teacher to be brutally honest on his progress. As a teacher, we are aware of how every parent wants their child to succeed, so during a conference we try to be diplomatic. Sometimes, some teachers can be too diplomatic and you don't get a real sense of the pros and cons of what is happening in the classroom. Once you talk with the teacher and get the black and white picture of how he is happening, you can decide then if she/he needs to know about the condition.
  • As a teacher, I have to disagree. 

    I am in a situation this year where I was not informed of a students exceptionality, and it has put us WAY behind. This stresses both the student and the teachers who feel they are always catching up instead of dealing with things proactively. Had we as a staff known what to expect, we could better plan and accommodate. Even now, the parents have been less than forthcoming, and we are really struggling with how to best meet this child's needs.

    We deal with all sorts of things as teachers, and not once has a child's diagnosis gotten in the way. In my school, we aren't about the label, just about knowing how to best treat a child - and that goes for EVERY child... They're all different, whether they have a diagnosis or not.

    Good luck with the new adventure!
  • You guys are awesome.  I think I am going to keep very close tabs on things and watch how it goes.  His teacher said he had an awesome first day today, so I am happy about that!  He came home and told us what a fun day he had.  I am relieved he didn't have any issues being shy or nervous.  He did have a potty accident, but I kind of expected that.  One day at a time is my new mantra.  I think at the first sign of trouble, I will let her know what happened, but since expectations are so low now (play, color, etc) hopefully he will do ok and his skills can gradually evolve with the increase in work.  Fingers crossed :)
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    Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

  • I'll chime in just because my daughter had Grade I & II IVHs develop bilaterally after birth. I wouldn't share that information with her teacher because I don't see it as relevant. It's a condition that often resolves on it's own without lasting consequences. If there had been a consequence (e.g. CP) I would share that, but I wouldn't share her prematurity at this point because it's not having an impact on her school performance. I'll go out on a limb and say your neurologist is suggesting you not mention it mostly because it is not impacting him. Granted, if there was another injury besides the IVH then, I'm not as familiar with the possible clinical impacts of other brain birth traumas. It sounds as if he is developing typically? The major possible effect from IVHs (usually grade III and IV) is cerebral palsy. Your little guy would have started showing signs of CP by now. Granted, he is at higher risk for learning disabilities, but if that is going to emerge, I don't think it would majorly impact a 3 year old in pre-school.
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  • Day two went pretty well!!  He is having a lot of potty accidents (they ran through all the extra clothes I had for him), but other than that it is going fine.  

    Susan - Carson had moderate brain damage from oxygen deprivation, in addition to his IVH.  So we are unsure how it is going to play out.  His doctors were nearly certain he would have CP, but he does not, which was amazing.  There remains a possibility that he will have some issues with the school setting/school work/LDs - or (hopefully) not.  It is all a waiting game.  
    Image and video hosting by TinyPicImage and video hosting by TinyPic
    Baby Birthday Ticker Ticker
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    Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

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