So, yesterday I go to the annual meeting regarding my son. His caregiver lays it on the table that she's getting married much sooner than she had originally said, and that she wants my son Nicky out of her home by the end of September.
She then says to my son's service coordinator, "Oh, didn't I tell you this before? I'm sorry, I've been so busy that I must have forgot."
The service coordinator looks at her like, "OMG, how are we supposed to get another placement for this child on such short notice?"
So, I, as his mother, start asking a lot of questions. Come to find out, group homes have become passe and no new ones are being built. So, there are no placements available now or for years to come. Openings will only occur if a resident moves or dies. There is a long waiting list.
However, Nicky can't come home to live with my husband and me or else he'll be taken off the group home "list" for any possible opening that may occur, likely in 10 years or so.
There aren't any family care provider homes (these are private homes where people "foster" special-needs children) available at this time.
So, I, his mother, asked, through tears, "So where the h double l is my son supposed to live?"
"Well, there's an older lady who might take him in on an emergency basis. But, remember, it is only temporary respite."
CAN YOU BELIEVE THE SCREWED UP SOCIETY THAT WE LIVE IN TODAY???
How is an older lady supposed to take care of my aggressive, powerful autistic 12-year-old??
So, the "plan" for now is for my son to hop from respite house to respite house while we search the entire state of NY for a family care provider.
Of course, I'm crying my eyes out as I'm being told this, but everyone else at the table remained dry-eyed. They told me to write my congressman if I didn't like it.
After the allotted meeting time was up, all parties except myself and the current care provider got up, left the table, did NOT wish me well, and didn't even tell me goodbye! They instead told my caregiver, "Goodbye! Good luck on your upcoming marriage!"
I am dumbfounded at the lack of compassion in our society. I was dumbfounded when I discovered it after getting Lyme disease and I am once more beside myself with disbelief.
I talked to my husband. I want to bring Nicky home despite my disabilities with Lyme. Screw them all and the system. My husband said that if nothing good comes along in the next few months then that is what we will do. But, don't get me wrong, it will be extremely difficult for us to do this as my son is much stronger than I am and I am still very disabled by Lyme disease.
Thanks for letting me vent. I WILL write my congressman, though I doubt it will do ANY good.
I am so stressed out right now I feel like I want to die. I don't want my son passed around like a piece of meat!
- Lymelady
Posted by Dekrator48 (Member # 18239) on :
Lymelady,
I'm so sorry that this is happening!!
Your precious Nicky deserves the best care.
I will continue to pray for a better solution to unfold.
BIG HUGS!
Posted by John S (Member # 19756) on :
That is horrible.
Posted by kidsgotlyme (Member # 23691) on :
I am so sorry!! That is awful. People who have never experienced real pain and suffering sometimes can be so cruel without even meaning to be.
While I sometimes wish for a "normal" life, I am thankful for the lessons that I have learned thru my child and myself having chronic illnesses.
I have learned to be much more tolerant of people. I pray that you will find a good home for your son. Is there any way that the state would pay someone to come into your home and help care for him?? Just a thought.
Posted by INEBG (Member # 27690) on :
I had the same thought as kidsgotlyme - can someone come in? I know of a 13-year-old who has that setup; he lives at home and has caregivers who come in to help in the day and evening. PT and other services are also provided. I hope you can work something out so that your son gets the care he needs, and you are not put in a situation that may be detrimental to your recovery.
Posted by Misfit (Member # 26270) on :
Bless your heart...i cant even imagine what you must be going through. I dont know if it would help but contact your local state representative in person if possible and explain your plight. Mine helped me with a social security issue years ago. Its worth a try. My heart goes out to you!
Posted by lymeladyinNY (Member # 10235) on :
Thanks for the advice and concern, everyone.
Before my son left my home 3 years ago we had help coming into the home. Unfortunately, the helpers would either not show up, quit, or called in sick more often than they would help.
One time the agency sent us a convicted felon (they hadn't done a background check) and he was frightening me because I was bedridden and he was yelling at Nicky while giving him a bath. Soon after they called and said he wouldn't be returning. They wouldn't tell me why but I later found out he'd lied about having recently been in prison.
I'm going to bombard my local state senator with letters asking for help.
I went to the emergency respite home today to see where Nicky will go after he leaves his caregiver's home. This home is 50 miles from where I live. He will be with three 40-something year old men and one 20-year old. They are all special needs. The 20-year old has similar disabilities as Nicky. They are both Down syndrome complicated by autism.
The home reeks of cigarette smoke and the lady is in her 60s. It is a clean home on a dead-end street, but there is a pool and railroad tracks nearby which makes me nervous.
My prayer is that he won't have to stay there very long or even at all if, by some miracle, a permanent placement is found by mid-October, which is now the date Nicky will definitely leave his current situation.
I feel as heartsick and broken right now as I did the day he was born and I was told he has Down syndrome and likely wouldn't live through the night. I'm so worried about his safety that I can't stand it.
The older lady told me my son is "adorable" and she'd like to have him with her. She saw him when he was on his best behavior this morning. She has yet to dress him, feed him, or get him to go anywhere. How adorable will he be then??
I AM grateful for this for now, but the situation is far from ideal.
One day at a time... Posted by linky123 (Member # 19974) on :
So sorry you're going through this. Yes, people can be very cruel.
We'll keep you in our prayers.
Take care.
Posted by Lymetoo (Member # 743) on :
I'm speechless. I'll be praying for you and your entire family. You have been through so much!!
Posted by opus2828 (Member # 15407) on :
Praying for you and your family. Maybe things will work out for the best.
Posted by sammy (Member # 13952) on :
Lymelady, I'm praying for you and your family. And sending you a hug. Hang in there.
Posted by lymeladyinNY (Member # 10235) on :
Thank you for the prayers. I truly appreciate them. I knew at Lymenet people would understand what it's like to not be heard, to have a terrible life situation shrugged at by others.
Yesterday I spoke with my family about my situation and it was like I was talking about the weather. I love them but I really felt alone. It is another topic, along with Lyme disease, that I'm unable to connect to others about. It is very lonely and scary to have both Lyme and my son's situation on my shoulders.
I keep fooling myself that I will be able to care for my son myself. But last night I had a terrible bartonella attack. These attacks resemble seizures and I get confused and I'm unable to speak properly. I also get bad headaches and scream.
So, then reality hits when I come out of these attacks and I KNOW I can't take care of my darling properly.
I hope this rambling is making sense. I feel like the stress is just going to strike me dead.
- Julie
Posted by sammy (Member # 13952) on :
Julie, you make perfect sense. It is obvious that you love your son dearly. You are trying to get him the best care possible because you cannot care for him yourself. It is heartbreaking to have to let others care for him when you want to be able to do it yourself. But it is what you have to do.
There is so much about Lyme and life that is not fair. So cry, scream, and vent your frustrations here everyday. We're here for you.
Hugs Posted by lymeladyinNY (Member # 10235) on :
Sammy, thank you - your post means a lot to me.
My son is with me right now. So far this morning he has broken his favorite toy, thrown another toy onto my toe, punched me in the breast, threw a shampoo bottle at my head, and last night while I was trying to make supper he was pushing me around the kitchen and trying to put his hands in the hot food.
He does all of this with a smile and a laugh on his adorable face and I can't help it - I love him so much!
I do have one lead right now but I'm afraid to get my hopes up. A lady I know in the town where I went to school may be able to help. I am waiting to hear a reply from her. I will update in a new posting when/if there is news.
- Lymelady
Posted by Misfit (Member # 26270) on :
Im so praying that this lady will be the answer to many prayers! Thanks for updating us...you and your family are in my thoughts.
Posted by TS96 (Member # 14048) on :
I'm praying for you too! Somehow, some way this is going to work out.
I wish I could live next to you and give you a break for an hour or so.
I have a 14 yo nephew that has issues with oppostitional/defiance/compulsiveness and when I feel ok I help my brother by watching him so he can have a little break from him.
I know it's very draining and requires God given patience.
God Bless your family
Posted by kidsgotlyme (Member # 23691) on :
TS96-I know that sometimes we can blame lyme for everything, but I just HAD to comment on your post.
My daughter's initial symptoms of lyme were the same symptoms that you are using to describe your nephew's behavior. Have they every gotten him tested??
I wish I had only known what was REALLY going on when she started acting so strange. Her first symptoms were not pain, but VERY bizzare behavior.
Just thought I would mention it.
Posted by Stacyb (Member # 13084) on :
Julie,
My son is the same age as your and has autism as well. Guess what he also has Lyme and Bart! Bart as we both know can make one do all the things you describe and more with your son. I too was wondering if he was tested and treated. I know from Dr J that many had Lyme induced autism. Many kids with autism have allergies to gluten(wheat) and casein (dairy).
Is there an department of MR/DD in your county?
I am praying you find a better solution for you son. Here in my state we have home-care waiver so I am wondering if a state change for him would make him eligible for that type of care. I know PA state does a lot with autism but I was not sure how far you are from there?
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