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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

Exciting and Heartbreaking all at the same time- (kind of got off subject my guess I needed too...

Posted by on Mar. 4, 2013 at 7:25 PM
  • 10 Replies

(please dont judge...)

Tears of joy and heartbreaking tears all mix up into one evaluation update for speech.... My son did so well in his speech evaluation and improved a 1 1/2 year of skills in 6 months... but also heartbreaking because reality hit me when the threapist tells me so he is about at a 2yr 7month comprehension of langauge skills... That was like a stabbing knife into my heart...yes I see he improved a 1 1/2 in 6 months in skills but my son is 7yrs... I am so excited for the gain of skills and all this process he is making, but also its heartbreaking too... It is a consistent battle and a hard battle... Iam so mixed with emotions right now.. and I feel all by myself.. noone to turn too..

My husband is deployed and is still having a really HARD time wt our son's disabilities. He always thought he would out grow it..and then when he went with me to a doctor's appointment and sad that he was congitively disability (Doctors has added PDD, and ADHD). he just flat refuses to go to any appointments.. and it is really hard.. He told me when he left he did not want to hear about any problems or anything that can stress him out.. and I am trying but grr sorry totally different subject.. My husband is in denial and he doesn't know about the PDD dx.. and I am worried... and he needs to stay alive.. (he has LOTS of responsiblities) But also needs to know.. it is a no win situation... and the sad part is he is breaking my heart and I am being strong because I know he loves us and he is doing what is EASY for him to make it through this deployment..but me it is taking everything out of me...

I hear my sons teacher "u r a great mom, you are doing so well with him, u r an awesome parent' and his speech therapist say " I think you are amazing, u r really good with him"... but OMG I dont feel like that.. I want support I want to turn and have someone there who is fighting with me not making me fight for the both of us... I'm married my son has a dad.. but at times I feel he choose what he wants to be involved with.. maybe it is his way of dealing wt all this.. ANd yes we talked (me and my husband) about this.. we had a really indepth conversation and he is trying before he left...but know i just dont know.. I dont know what he is going through there and he doesnt see what I am doing here. GRR sorry just venting.....

by on Mar. 4, 2013 at 7:25 PM
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Replies (1-10):
Angelicmom24
by on Mar. 4, 2013 at 8:36 PM
Men have a hard timw facing the fact something is wrong and they cant fix it my dh is same way he is not trying ti say maybe the main dr who dx my son is wrong and just labeling him ..I said fine thats ur opinion but I dont agree and I can show u page and page of results backing. Dr up..
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mypbandj
by Jen on Mar. 4, 2013 at 8:58 PM
Dad have a really hard time with this. Especially when it comes to their sons. My dh is the same way.

I was telling him about our EI appointment today (I posted about it) and his reaction was, why are you talking with the lady about that?? He's just a baby! And that stuff he does is just because he's a baby.

I've also heard him say that I want our ds to have problems. Well, I have no ability to force EI to qualify him for services. I know plenty of kiddos who need EI and who are not able to qualify. Obviously, they saw something too. It's not just me.

Maybe with your dh, try to focus on everything your ds can do. If he doesn't like the labels, then don't talk about them. Talk about your sons goals...that will be easier to hear. Labels seem so permanent. I can understand why it stresses him out. He's afraid.

I think if you can reframe the conversation to focus the positive and what goals are in play, then he might be able to deal with it easier. (We are trying to get ds to say his name, we want ds to count to ten, etc). Then, guess what, ds said his name today!!

This way, you're all focused on his progress!!

Hugs. You can always come here to vent and share.
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Charizma77
by Carissa on Mar. 4, 2013 at 9:06 PM

Hugs! You need to tell your dh how you are feeling (and educate him) the more support your son gets the better.. Hang in there, you are doing the best you can..but you need to make sure you are taking care of yourself too. 

mothersthought
by on Mar. 4, 2013 at 9:42 PM

 

Yes, focus I hear u.. we do focus on the abilities and not the "disabilities" all kids have needs mine kid just has different needs... Thank u...

Quoting mypbandj:

Dad have a really hard time with this. Especially when it comes to their sons. My dh is the same way.

I was telling him about our EI appointment today (I posted about it) and his reaction was, why are you talking with the lady about that?? He's just a baby! And that stuff he does is just because he's a baby.

I've also heard him say that I want our ds to have problems. Well, I have no ability to force EI to qualify him for services. I know plenty of kiddos who need EI and who are not able to qualify. Obviously, they saw something too. It's not just me.

Maybe with your dh, try to focus on everything your ds can do. If he doesn't like the labels, then don't talk about them. Talk about your sons goals...that will be easier to hear. Labels seem so permanent. I can understand why it stresses him out. He's afraid.

I think if you can reframe the conversation to focus the positive and what goals are in play, then he might be able to deal with it easier. (We are trying to get ds to say his name, we want ds to count to ten, etc). Then, guess what, ds said his name today!!

This way, you're all focused on his progress!!

Hugs. You can always come here to vent and share.


 

blessedhappymom
by on Mar. 4, 2013 at 11:49 PM
I understand how you feel. I feel that if I let the shoe drop and show my real emotions about this then my family will follow. If I stay strong, then it's reassurance to them that everything is ok. I'm thankful to other moms who walk through what we walk through and understand ALL that we face.

Don't let the flip side of your sons development get you down. Stay focused on the positive!! He is making progress and will continue to make great progress and its those moments of progress that keep us going.
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KatyTylersMom
by Silver Member on Mar. 5, 2013 at 3:09 AM

I have so been there with the "oh your kid is doing so great, has progressed so much, BAM still below the 6th percentile for his age" dagger in the heart.  It's so easy to be happy when my kiddo is doing great and making gains and then it's just a cold slap of reality when the testing shows how "great" he's doing in comparison to himself 6 months ago (WOOHOO) aaaaaaand then to other kids (BOOHOO). 

It's hardest when moms or other kids at the playground ask how old he is and then look worried or taken aback by the answer compared to what they thought.  Makes me want to scream look lady, you have no CLUE how hard it has been to get him to this high a point of functioning and verbal level.  You go home and you kiss your lucky star and your NT kid who learned all his words just by watching TV and listening to your endless phone conversations (really? you're at the playground and on the phone for AN HOUR? maybe try interacting with your kid who has been talking MY ear off this whole time eh?) because if you had MY kid he'd be SO SCREWED b/c you have NO IDEA how to encourage a skill 10,000% every single day and get rewarded with failing percentiles. 

mothersthought
by on Mar. 5, 2013 at 9:02 AM

 

I feel you..or they ask "whats wrong with him".. He still not potty trained...GRR... Let me tell u he is on track for his congitive development to understand the progress..so dont FREAKING judge me...like u said I don't think they will ever understand unless they r in our shoes.. even the therapist and drs and whoever else works wt r kids "just because they r professionals they have no idea...when they say try this..or that or you should be doing this... OMG it is so frustrating... They can't fullly get the scope of the challenges unless they live and breath it..

Quoting KatyTylersMom:

I have so been there with the "oh your kid is doing so great, has progressed so much, BAM still below the 6th percentile for his age" dagger in the heart.  It's so easy to be happy when my kiddo is doing great and making gains and then it's just a cold slap of reality when the testing shows how "great" he's doing in comparison to himself 6 months ago (WOOHOO) aaaaaaand then to other kids (BOOHOO). 

It's hardest when moms or other kids at the playground ask how old he is and then look worried or taken aback by the answer compared to what they thought.  Makes me want to scream look lady, you have no CLUE how hard it has been to get him to this high a point of functioning and verbal level.  You go home and you kiss your lucky star and your NT kid who learned all his words just by watching TV and listening to your endless phone conversations (really? you're at the playground and on the phone for AN HOUR? maybe try interacting with your kid who has been talking MY ear off this whole time eh?) because if you had MY kid he'd be SO SCREWED b/c you have NO IDEA how to encourage a skill 10,000% every single day and get rewarded with failing percentiles. 


 

JTMOM422
by Brenda on Mar. 5, 2013 at 9:13 AM

I think for your husband he is grieving. The son he thought would be isn't going to be. I know that my husband rarely asks how my sons therapies go. I know it's not because he doesn't care. He is just scared. I am the one who does the appts. I am the one who does the therapies. My husband will take time off to go if I feel it's an important appt. Give your husband time. I think we as mom handle it better. HUGS

VioletsMomTown
by Robyn on Mar. 5, 2013 at 9:14 AM

My husband is the same way, he glazes over as soon as I talk about therapy or any of that. I do it all on my own, and he is home, he just can't handle it. I gave up long ago on him going through the hard stuff with me. You child is lucky to have you at least. I'm not saying my huband doesn't love our daughter, but he's not capable of being the rock I need. He's still a loving dad, and that's important too.

mothersthought
by on Mar. 5, 2013 at 1:29 PM
You hit it on the dot there.. Iam the rock when it comes to our son and his disabilities.. but this rock needs an outlet.. im grieving also.. but i cant let that get in its way... he loves r son so much... and is geeting pass that he will not b that "son he image"... this is so hard... letting go and accepting... i love him so much he is my blessing...


Quoting VioletsMomTown:

My husband is the same way, he glazes over as soon as I talk about therapy or any of that. I do it all on my own, and he is home, he just can't handle it. I gave up long ago on him going through the hard stuff with me. You child is lucky to have you at least. I'm not saying my huband doesn't love our daughter, but he's not capable of being the rock I need. He's still a loving dad, and that's important too.


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