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Permalink Reply by Ginny Ward on January 27, 2011 at 4:25am

At about that age my son started using a bright red scooter from a reliable durable medical equipment vendor. The other kids in school really loved it and he used it when he felt he needed it.

 

Ginny

mother of John age 20

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Permalink Reply by Rita Felling on January 27, 2011 at 3:31pm

Hi Penny

 

I have went through that with both my sons that have DMD.  I wish I could give you an answer or solution that would work.  I spent many mornings in tears as you have.  I can tell you the fear and panic decreased over time.  Now both my sons enjoy seem to enjoy school, but there are things that can set them off still,  such has a substitute bus driver.  I really feel it is oart of them learning and accepting the progression of the disease. Both my sons struggle with cognitive delays and I know that is part of the problem they do not know how to handle so much happening to their bodies and its part of their way of coping.   You are on the same thinking as me with the theory they do it with mom but no one else.  I am a sinngle parent and i know my sons do not act that way with their father.  I finally found that bribing them works.  We have created a reward system that they understand.  If they make it all week without a meltdown as we call it they get to watch a special movie- thank goodness for red box.  Sometimes I treat them with a toy or an activity with mom.

My thirteen year old now has decided he will not talk at school.  I am struggling with finding ways to get him to be vocal at school, he just refuses to participate vocally.  He is very vocal at home and around friends. It is very frustrating for both the boys and us as parents.  I did find that when I finally was able to get a para on the bus it helped with my sons.  I know it is very hard right now but there simply is no right way or one way  to handle it.  Hang in there.  You could  try talking to the school if you can find someone there to help or offer some ideas on how they could make it easier.  If it helps at all I feel your frustration, you are not alone.

 

Rita

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Permalink Reply by Ginny Ward on January 27, 2011 at 5:00pm

I am sorry I did not ask about Para support at school. He would have and IEP under the orthopedic classification ans should be entitled to have at least "shared" Para support. The definitely makes a difference if you have a good Para. My son also has difficulty in adjusting to change in routine, so you are in good company there, not that that is any comfort since we are not there with you.

I don't know if you are Medicaid eligible at this time, but each State has a waiver system (In some States it is called the Katy Becker waiver) that allows children who would not financially be normally eligible for Medicaid to go n a waiting list (sigh) where over time they would become eligible. That would help with durable medical equipment and other expenses. Depending upon your income your son may also be eligible for Social Security. If he is financially eligible, DMD is one of the diagnoses that automatically qualify for SSI with only minimal paperwork. These financial resources can be used to help with activities and services that might make things a little easier for your son and give him some potential rewards (bribes) to look forward to.Call your department of Social Services and ask about EBD or HCBS or Katie Becker waivers and Social Security about eligibility for SSI.

 

Ginny

Mom to John age 20.

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Permalink Reply by Penny Hauer on February 9, 2011 at 1:10pm

Ginny I never appled for SSI as we get alittle on adoption ass.istance which gives us medical. I am now trying to get a cardio dr that will listen to me Caleb gets a strange beating to his heart it goes from 55 to 120 and then it jumps back and forth he gets very pale and is scared to death went to cardio dr put him on monator and I recorded two times that it happened sent it in and the teck said donot call dr as this does not fall in the numbers he wants. I then took it off and sent it back as I knew he didnot get what was happening and how much does he know about dmd hearts all three of Calebs uncle and two cousins died of heart related issues David in Fla said that age his son was on a med for heart that Dr Wong starts them at that age do you or anyone reading this know about the meds for heart I told the dr that I did not care if he walks or now but I do care that his heart beats as long as it can . I just dont know what to do but do something I must. how many children do you have? I so love being a Mom but not when I can t get the best for my guy.he was star of the week at school this week and he has yet to take his pics to school cause he said he does not feel like a star this week just starting wearing AFOs and he feels different I said but you are our star and he said lets just keep it in the family then.He will take it tomorrow or I will.  there are times I just want to keep him home and sit with him and let him play with his videos let him be who he is and not feel different. We are trying to get a service dog I feel that someting that will be his more of a therpy type dog.I ahve taken enough of your time thank you for writting back when you did  PennyGinny Ward said:

I am sorry I did not ask about Para support at school. He would have and IEP under the orthopedic classification ans should be entitled to have at least "shared" Para support. The definitely makes a difference if you have a good Para. My son also has difficulty in adjusting to change in routine, so you are in good company there, not that that is any comfort since we are not there with you.

I don't know if you are Medicaid eligible at this time, but each State has a waiver system (In some States it is called the Katy Becker waiver) that allows children who would not financially be normally eligible for Medicaid to go n a waiting list (sigh) where over time they would become eligible. That would help with durable medical equipment and other expenses. Depending upon your income your son may also be eligible for Social Security. If he is financially eligible, DMD is one of the diagnoses that automatically qualify for SSI with only minimal paperwork. These financial resources can be used to help with activities and services that might make things a little easier for your son and give him some potential rewards (bribes) to look forward to.Call your department of Social Services and ask about EBD or HCBS or Katie Becker waivers and Social Security about eligibility for SSI.

 

Ginny

Mom to John age 20.

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Permalink Reply by Ginny Ward on February 13, 2011 at 3:55pm

If your income is within their limits, apply for SSI anyway. It gives you more options on treatment because you have  more money to spend.

 

Ginny
Penny Hauer said:

Ginny I never appled for SSI as we get alittle on adoption ass.istance which gives us medical. I am now trying to get a cardio dr that will listen to me Caleb gets a strange beating to his heart it goes from 55 to 120 and then it jumps back and forth he gets very pale and is scared to death went to cardio dr put him on monator and I recorded two times that it happened sent it in and the teck said donot call dr as this does not fall in the numbers he wants. I then took it off and sent it back as I knew he didnot get what was happening and how much does he know about dmd hearts all three of Calebs uncle and two cousins died of heart related issues David in Fla said that age his son was on a med for heart that Dr Wong starts them at that age do you or anyone reading this know about the meds for heart I told the dr that I did not care if he walks or now but I do care that his heart beats as long as it can . I just dont know what to do but do something I must. how many children do you have? I so love being a Mom but not when I can t get the best for my guy.he was star of the week at school this week and he has yet to take his pics to school cause he said he does not feel like a star this week just starting wearing AFOs and he feels different I said but you are our star and he said lets just keep it in the family then.He will take it tomorrow or I will.  there are times I just want to keep him home and sit with him and let him play with his videos let him be who he is and not feel different. We are trying to get a service dog I feel that someting that will be his more of a therpy type dog.I ahve taken enough of your time thank you for writting back when you did  PennyGinny Ward said:

I am sorry I did not ask about Para support at school. He would have and IEP under the orthopedic classification ans should be entitled to have at least "shared" Para support. The definitely makes a difference if you have a good Para. My son also has difficulty in adjusting to change in routine, so you are in good company there, not that that is any comfort since we are not there with you.

I don't know if you are Medicaid eligible at this time, but each State has a waiver system (In some States it is called the Katy Becker waiver) that allows children who would not financially be normally eligible for Medicaid to go n a waiting list (sigh) where over time they would become eligible. That would help with durable medical equipment and other expenses. Depending upon your income your son may also be eligible for Social Security. If he is financially eligible, DMD is one of the diagnoses that automatically qualify for SSI with only minimal paperwork. These financial resources can be used to help with activities and services that might make things a little easier for your son and give him some potential rewards (bribes) to look forward to.Call your department of Social Services and ask about EBD or HCBS or Katie Becker waivers and Social Security about eligibility for SSI.

 

Ginny

Mom to John age 20.

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