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Raising Special Needs Kids Raising Special Needs Kids

I'm sort of a wreck.

Posted by on Mar. 4, 2013 at 6:42 AM
  • 19 Replies
I've known since my 7 month old baby was born that something was amiss. He had a weak grasp reflex and had, in my opinion, mildly floppy limbs. Since these observations, I've had it in the back of my mind but didn't dredge it up again until he was coming up on 4 months without having done many milestones. At nearly 7 months, He is no where near close to crawling. He is so creative though because he is *starting* to realize that he can figure this out another way. ;)

We saw our pediatric physical therapist last week. He is developmentally delayed and is hypertonic. We have a neurological appointment in a couple of weeks. She did say that while he's doing so very well, his muscle tone could get worse but he'll be seen once a week for the time being and bump it up if necessary.

I am so scared. And I know this isn't about me so why do I feel so yucky about this? There are a few things that I am certain of. For instance, I know that in the end Lincoln is going to move on from this with what is, to him, a normal life. So why do I cry every time I talk to someone about it? Or read anything about it? I mean, I think people would call me a hot mess really. Another example is that I know Lincoln is going to meet these milestones at some point with whatever help he needs but why do I get so sick at my stomach when I see his little friends his age zooming around and sitting up with absolutely no help? I was fine the first week. I think I was riding a huge high of "told ya so" because I have spent the last 3 months telling hisdoctor that I felt like something was wrong but she has dismissed everything I've brought up to her. So we switch to an amazing doctor and got him the referrals that he needed and a few day after that, it hit me. What have I done to cause this? I know I can't go there but how can I not? I grew his brain. Now I would never label a mother at fault for their children's disabilities so why can't I cut myself a break?

Sorry for ranting. I guess I just need some uplifting advice. For me personally? For me, as his advocate? How to deal with people who just make it awkward because they don't know what to say? Lol I don't even know the questions to ask his neuro. Any suggestions are absolutely appreciated.

Maegan
by on Mar. 4, 2013 at 6:42 AM
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Replies (1-10):
scmom1216
by on Mar. 4, 2013 at 7:17 AM
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 I had the same thoughts each time my son got a new diag.  My doc assured me it was nothing I did, but it always seems to sit there at the back of your mind.....I have alot of people who don't think there is anything wrong with my ds because they are not "visible" disabilities, I just tell them everyone is who they are and I was lucky enough to have an extra special child, that usually helps them.  With the specialist I wrote down every little thing I noticed or wondered about and went over them with the Dr. 1 at a time to make sure I didn't miss anyhting, I'm sure it may seem like I went overboard but I figure I would rather have something be nothing than to have missed it.  Good luck!

darbyakeep45
by Darby on Mar. 4, 2013 at 7:47 AM
1 mom liked this

Welcome Maegan!  Glad you are here:)  You are doing all the right things...you are an awesome mama!  Keep going, and stay strong:)  Seeing all the specialists and going through those routes are just what you need to do in order to figure out what's going on with your little guy.  He may need to start Occupational Therapy along with the PT he's getting...have you considered that?

maeswain
by on Mar. 4, 2013 at 9:12 AM
Thanks for responding! That's funny you mentioned that because when i first got our referrals, my side of the family just stared at him. It's very hard for me to not get upset by it. I know that they're just trying to see what I've been screaming out about for months on end. But really, i felt like they were waiting for something to happen that would make them believe it or something.



Quoting scmom1216:

 I had the same thoughts each time my son got a new diag.  My doc assured me it was nothing I did, but it always seems to sit there at the back of your mind.....I have alot of people who don't think there is anything wrong with my ds because they are not "visible" disabilities, I just tell them everyone is who they are and I was lucky enough to have an extra special child, that usually helps them.  With the specialist I wrote down every little thing I noticed or wondered about and went over them with the Dr. 1 at a time to make sure I didn't miss anyhting, I'm sure it may seem like I went overboard but I figure I would rather have something be nothing than to have missed it.  Good luck!



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maeswain
by on Mar. 4, 2013 at 9:14 AM
And i LOVE your ideas about writing things down! When i get at all emotional, my mind goes blank to what is going on. I don't want to leave a stone un turned either!



Quoting scmom1216:

 I had the same thoughts each time my son got a new diag.  My doc assured me it was nothing I did, but it always seems to sit there at the back of your mind.....I have alot of people who don't think there is anything wrong with my ds because they are not "visible" disabilities, I just tell them everyone is who they are and I was lucky enough to have an extra special child, that usually helps them.  With the specialist I wrote down every little thing I noticed or wondered about and went over them with the Dr. 1 at a time to make sure I didn't miss anyhting, I'm sure it may seem like I went overboard but I figure I would rather have something be nothing than to have missed it.  Good luck!



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maeswain
by on Mar. 4, 2013 at 9:32 AM
Thank you! His physical therapist said he's doing so well because we spend so much time on our tummies. :) that was a little drop of awesome in my bucket! I was so proud. Ha.



I'm unsure of the difference in PT & OT. Would you mind elaborating?



Just some more background... Lincoln's hypertonicity is mild enough that he can move against it. Even though he naturally pulls his arms & shoulders back, he can bring them forward to hold a bottle or play with a toy. His motions are not fluid. He is so good at tummy time, though he does not use his knees or feet for anything butbut he is either propping himself up with arms or is often"swimming" when he doesn't have something to hold. He also stands on his tiptoes. I'm praying his tone only gets better.



Quoting darbyakeep45:

Welcome Maegan!  Glad you are here:)  You are doing all the right things...you are an awesome mama!  Keep going, and stay strong:)  Seeing all the specialists and going through those routes are just what you need to do in order to figure out what's going on with your little guy.  He may need to start Occupational Therapy along with the PT he's getting...have you considered that?



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sammygrl77
by on Mar. 4, 2013 at 10:11 AM
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(((Hugs))) it is a grieving process we all go through. And 'mommy guilt' is another thing many of us go through. Both get better in time. Just do your best to fight those guilt thoughts when they come and treat thr grief like you would for any loss.

As far as family and friends, it's tough to explain when you don't have answers yourself. My mom told me that they were all grieving also. They aren't in my everyday life in the trenches with us, but they feel lost as well. I found that taking to them honestly, even when I didn't have answers, was the best for me. I've also learned that there will be comments that really hurt and I have to let them know that.
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letstalk747
by Joy on Mar. 4, 2013 at 11:06 AM
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welcome  Maegan , im joy

keep educating yourself , i know its rough , lots of support here

mandee1503
by Amanda on Mar. 4, 2013 at 11:50 AM

Welcome! You are doing everything in your power to get your son help.

Pukalani79
by on Mar. 4, 2013 at 12:19 PM

 Welcome to the group! You are your son's best advocate.  Keep pushing and pushing and pushing until you feel you are being heard by those who can help him. I'm not in the same situation as you, but it took two years to get a good diagnosis for my daughter. Don't give up!

maeswain
by on Mar. 4, 2013 at 8:40 PM
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I'm so grateful for all of the responses! I am really looking forward to getting to know each of you and your journeys!
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