lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Today my son with Down syndrome/autism moves from his permanent placement to an emergency respite home. I am very sad about it.
The only good news is that he can remain in the school he currently attends, even though he is moving out of his current school district. That's because he's covered under a law for homeless children in transitional housing called the McKinney-Vento Act. This law allows my son to remain with the school he attended when he had a permanent home.
I hate to think of my 12-year-old son as "homeless". If it weren't for being so severely ill with these unrelenting diseases this wouldn't be happening.
I woke up in the middle of the night last night and felt really sick. I started to sob because it really hit me that I'm in a bad, bad way.
The stress of my son's situation has really knocked me down. I've been having seizures and I've been screaming in pain.
I'm trying to "buck up" because I can't be spiraling like this - not when my son's situation is still so precarious. And I have two other children to worry about.
Prayers are still needed here, Lyme family. Thank you so much.
- Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
My cousing is severly mentally handicapped, so I understand the challenges. I grew up living right next door to him and his family.
One of my best friends is down syndrome.
I wish I lived closer , I would have loved to foster him. Are there any agencies that can help you? In our area, agencies are much better than letting the government directly deal with things.
The agencies can ensure that he is in a great stable home that can best provide for his special needs.
I am so sorry this is happening to you.
Wish I was there to be able to give you a big hug, and let you cry on my shoulder.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
| IP: Logged |
posted
My heart is breaking right along with yours. This must be so hard for you.
If a home comes open, will your son be one of the first considered? I will pray that a home comes available for your son, SOON.
My DH's uncle has Down's, and lives on his own in a community home in Connecticut. Part of a program he's been in since the passing of his parents, since he is 52. There needs to be a LOT more such communities. But he's able to live on his own with some assistance.
I wish there was someone available for you as well. So you wouldn't have to do so much "bucking up".
Your whole family will remain in my prayers. *hugs*
Posts: 624 | From Oklahoma | Registered: Jun 2010
| IP: Logged |
posted
Prayers for a good resolution for this very difficult situation. You are going through so much. my thoughts are with you and your son.
Posts: 857 | From northern california | Registered: Dec 2009
| IP: Logged |
kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Julie- Once again I am so sorry for what you are going through.
I will be praying for your situation.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Julie, I've been praying for you and your family.
Try not to think of your son as being "homeless". Living in a temporary emergency residence facility does not mean homeless in my mind.
What is your definition of a home? (Don't think long, what pops into your head now) Is it a structure that provides shelter? Is is a place to belong? Is is a place where you are loved and cared for? I think that it is somewhat all of these things.
I've volunteered overseas several times. When I've gone away I've taken very few personal possessions, bare necessities. Even though I was far away from my "home" in Ohio I had another "home" right where I was. Sometimes the physical surroundings were not ideal but you know it's OK. I missed having a good shower and sleeping in my own cozy bed. What I missed the most was physically being with my family and friends.
So even though your son is living in a less than ideal "home" he is still living in a home. That home may change but he will still have people around him that care for him. He has a place to rest his head at night. He has food to eat. He gets to go to school with his friends. And he knows that you love him dearly.
Please try not to blame yourself for this situation Julie. You are doing the best that you can to care for yourself and your children. We just need to keep praying that God will provide for you, your son, and your whole family. That He will continue the healing that He has begun in you.
Big Hugs, you are a good mom!
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
julie, when so used to thinking the only home your child will know is with you, it's an enormous pill to swallow when they move on ... which is something i think most mothers experience -- though perhaps felt more so by those whose children depended on them for their special needs ...
but regardless of situation or age, they are forever in our hearts, which is truly where we house our children from the moment they are born-
i'm hoping you find quiet, peaceful times in between your worries and concerns ...
Posts: 94 | From shaker heights, ohio | Registered: May 2010
| IP: Logged |
posted
Oh Julie. Goodness I am saying a prayer for you and your son. I'm here if you need anything. I'll be thinking of you and your child.
Posts: 256 | From Texas | Registered: Jun 2010
| IP: Logged |
posted
I'm so sad that your family is going through this, Julie. It is really a tragic situation. I feel so badly for you and know that your heart is breaking.
Prayers going UP for you and your family.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Good news is that he is still able to be in the same school.
Hoping the new place is a good one for him and adjustment goes smoothly.
And Hoping for a wonderful permanent place for him soon.
it will be OK.
Take care of you. I know how stress makes us so much worse.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hello, Lyme friends. First of all, thank you SO MUCH for your support. I knew I would find it here.
Missing, I'm so pleased to hear that one of your best friends has Down syndrome. That's awesome. And you're sweet to say that you would foster him if you lived nearby. Thank you so much. About there being any agencies - yes, there are, and unfortunately, they all say that the state is not funding any new programs at all and won't for years to come. It is very disheartening.
Misfit, I don't think my son would be considered first. He's on a waiting list and there is no bumping up on this list. The trend seems to be to have assisted living in independent apartments for special-needs people, but for people like my son, who is severely mentally challenged, this is simply not an option. This is what gets me so upset - the state seems to be forgetting that not all people with special-needs are capable of supported independence.
I do have my local state senator interested in our case and I hope to speak to his assistant about my son tomorrow. She was supposed to talk to my son's service coordinator about our situation today.
Sammy, your words were very comforting to me, and I thank you for them. Yes, my son's emergency care provider and I spoke this morning and she is a loving person. He has a safe place to rest and, thankfully, the familiarity of school. I am so grateful to God that I was able to find out about the McKinney-Vento Act and help him stay in his district.
Yes, Kam, my son's adjustment is going smoothly. He seems to live in the moment and I'm hoping he's not looking for his former caregiver to come for him. He is behaving as he always does - kind of in his own little world. It is a blessing for him.
NOW, I've got to be more peaceful because my health has declined so precipitously and I've got some climbing back to do. I've got a bit of viral meningitis right now, I think. I have been so miserable.
Love to you all - Julie (Lymelady)
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
I am saying a prayer for you and your son. I'm here if you need anything. I'll be thinking of you and your child.
Printer-friendly view of this topic