I need a support group too

[HighSchoolParent]

The post about the extraordinary burden of IEPs on Moms got me thinking today that the biggest burden I carry is the awareness of the extent of my child's challenges. He presents typically which creates an illusion of competence. The reality is that he is falling further behind grade level at school, and further behind his peers socially and with ADLs. I am holding him together in multiple ways and if something were to happen to me I have no idea what would become of him. Given his skill set I cannot imagine him living independently or supporting himself financially. I'm not worrying unrealistically. I worked with his age group for over 10 years and can see how far outside the norm he is, and how he continues to fall further behind. He'll be an adult in just a few years, the window to turn things around is rapidly closing.

His school doesn't see it. They alternate between not seeing his disability and blaming all the signs of it on him. Even his father doesn't see it. The other day he said he could picture our child becoming an engineer. My child cannot do a simple jigsaw puzzle and fails every single math and science test in the lowest level of class his school offers. While we cannot know the future I am not seeing engineer without some significant intervention. I'm the one who does all the IEP correspondence, pays for the tutors, finds and pays for the advocates, while my child's father naively assumes everything will be just fine and does (and pays for) nothing.

I feel so alone.

I'm not looking for advice, I have an advocate helping me with his IEP. I just want to feel less alone.

 

 

[JSD24]

(((Hugs)))  With an IEP, he can stay in school up until age 21 so the school can teach him some of the skills he's missing.  There are assessments of ADL that he school could do.  They are supposed to set him up for success after HS graduation with the transition plan in his IEP.  What does your son want to do after HS?  IMO, you should start there.

[HighSchoolParent]

On 4/23/2023 at 11:52 PM, JSD24 said:

(((Hugs)))  With an IEP, he can stay in school up until age 21 so the school can teach him some of the skills he's missing.  There are assessments of ADL that he school could do.  They are supposed to set him up for success after HS graduation with the transition plan in his IEP.  What does your son want to do after HS?  IMO, you should start there.

Thank you! If this were going to happen automatically I'd be a lot less stressed. I do have an advocate who can help me with this, I am just feeling overwhelmed but the amount of work and money required to get the most basic support.

 

[Household6]

On 4/21/2023 at 9:05 PM, HighSchoolParent said:

The post about the extraordinary burden of IEPs on Moms got me thinking today that the biggest burden I carry is the awareness of the extent of my child's challenges. He presents typically which creates an illusion of competence. The reality is that he is falling further behind grade level at school, and further behind his peers socially and with ADLs. I am holding him together in multiple ways and if something were to happen to me I have no idea what would become of him. Given his skill set I cannot imagine him living independently or supporting himself financially. I'm not worrying unrealistically. I worked with his age group for over 10 years and can see how far outside the norm he is, and how he continues to fall further behind. He'll be an adult in just a few years, the window to turn things around is rapidly closing.

His school doesn't see it. They alternate between not seeing his disability and blaming all the signs of it on him. Even his father doesn't see it. The other day he said he could picture our child becoming an engineer. My child cannot do a simple jigsaw puzzle and fails every single math and science test in the lowest level of class his school offers. While we cannot know the future I am not seeing engineer without some significant intervention. I'm the one who does all the IEP correspondence, pays for the tutors, finds and pays for the advocates, while my child's father naively assumes everything will be just fine and does (and pays for) nothing.

I feel so alone.

I'm not looking for advice, I have an advocate helping me with his IEP. I just want to feel less alone.

 

 

You most certainly are not alone! 
 

My HS son is twice exceptional. It’s a term that not many are aware of. Because he presents as “typical” and has good grades, it’s a double whammy! 
 

We moved to a different state in middle school. All the new district sees is that he’s gone from 15 hrs of services in Kindy to 15 min in HS. So they’ve done their part! NO, YOU HAVE NOT! 

If they would have actually provided those 15 min per week of one on one, he would have soared even higher! 
 

So here we are looking at post-HS options and he’s scared he can’t make it in college.  And frankly, I am too. 

While my circumstances may not be as concerning as yours, I too find myself wallowing and searching for help.  I however, am blessed that his father (my husband) also sees the issues that remain. 
 

 

[HighSchoolParent]

On 4/25/2023 at 9:33 AM, Household6 said:

You most certainly are not alone! 
 

My HS son is twice exceptional. It’s a term that not many are aware of. Because he presents as “typical” and has good grades, it’s a double whammy! 
 

We moved to a different state in middle school. All the new district sees is that he’s gone from 15 hrs of services in Kindy to 15 min in HS. So they’ve done their part! NO, YOU HAVE NOT! 

If they would have actually provided those 15 min per week of one on one, he would have soared even higher! 
 

So here we are looking at post-HS options and he’s scared he can’t make it in college.  And frankly, I am too. 

While my circumstances may not be as concerning as yours, I too find myself wallowing and searching for help.  I however, am blessed that his father (my husband) also sees the issues that remain. 
 

 

 

Thank you for your support, and sorry you are in this place also.