lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Three years ago my son with Down syndrome/autism, Nicky, was placed in a "family care provider" home. Basically, it's a foster family for special needs children.
I was forced into this situation because I am too ill and weak to care for my son. He is nearly 12 years old and very strong. My husband looked like death warmed over when he was caring for me, Nicky, and our other two sons before Nicky was placed. I thought he was going to die.
Now, the lady who cares for him is getting married and moving to Canada. We will have to find a new home for him soon.
I spoke to his service coordinator this morning and she told me there is a five year waiting list for a group home. Also, there is a shortage of qualified family care provider homes.
In other words, my son will likely return to live with my and husband and me, possibly for years.
Don't get me wrong - I love my son so, so much. It's just that he's not safe with me, nor me with him. I can't change his diapers or get him into his clothes. I can't get him into the van. He hits, kicks, and pushes me so hard that I get headaches and muscle spasms from it.
He is a good boy, he just doesn't know his own strength or that he's hurting me. My husband and I have another son on the autism spectrum, too. Most families would be challenged by having one child on the spectrum - but we have two, plus me with severe tick-borne illness.
Sometimes I wish God would give my family a break. He HAS answered some significant prayers in the past few years. Nicky HAS been in a wonderful home and has been well cared for.
It's just not knowing when or if we will ever be able to locate another family able to give him the intensive care he needs. He will be going through puberty soon and getting much stronger and bigger.
WHO in this world would be able to or care enough to provide him with a stable, loving home over the course of many years? He has the love from his birth family, but not the ability.
I then thought, "Well, his brothers are getting older. His youngest brother is now 7 and is a "typical" child. Will it, in the end, be up to him to provide the physical care Nicky will always require? When my husband and I are too old or dead? I don't see the middle brother, the one on the spectrum, being able to provide the needed care. So now I'm worried for the youngest boy because, honestly, the responsibility for Nicky is a very heavy one, despite the deep love we all have for him.
My thoughts are in a whirlwind and I've been crying non-stop. I asked the service coordinator why Nicky can't get special consideration for placement in a group home since it's known that his family is unable to give him the care he needs.
She said it didn't matter because there ARE NO OPENINGS FOR ANYONE.
I believe, in the past, extended family and surrounding community helped in situations such as my husband and I find ourselves. But, I learned when I was bedridden with Lyme that people no longer feel such obligation, even to their own.
Nicky WILL live with me and my husband for the rest of our lives if we don't find an acceptable home for him elsewhere. He might have to run around naked until my husband can get home from work to dress him (he often takes his clothes off), but it's better than having him in a home where he's not loved and/or is being abused (God forbid!).
Anyway, I just thought I'd post this note here because, truly, since becoming a Lymie, I don't have any close friends and really, no one to talk to. I have one sister who is my confidante. She told me to keep praying and remember the answered prayers of the past.
Anyone who believes in the power of prayer, will you pray for my family and me? That we're able to provide the best home possible for our Nicky?
Thanks for reading this long note.
- Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Can't give you any answers, but I am thinking of you!
Posts: 893 | From Florida | Registered: Dec 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Julie,
I will definitely pray that you will be able to find the best possible home for Nicky and will be able to manage if he returns to your home.
I pray that there will be some unknown resources that will provide help.
I agree that it is all you can do to pray and have faith that God hears our prayers and things will work out.
I am sorry that you are facing this worrisome situation.
Psalm 37:5 (New American Standard Bible)
"Commit your way to the LORD, Trust also in Him, and He will do it."
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i am so sorry.
have you looked at maybe out of state? what about a nanny or live in aide? course that would cost.
i just don't have any good ideas. are there state schools? sometimes they have these special schools that will take them.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
You are in my prayers!!!
Is there a social service in NY that can give daily "at home care" companion type like there is for the elderly.
Praying solutions are found.
again a Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
I will pray that he will again find a even more loving home. God can do that!
And for you and your husband for health and strength during this difficult time.
God Bless you, you are a great Mom and your husband a wonderful husband and father.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
sent you a pm
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Julie, my heart goes out to you. I will be praying for your family, for you and your husband's health and strength, that God will provide for Nicky and your two younger sons.
Remember, what seems impossible to us is very possible to God. Check out Ephesians 3:20
*Hugs* I wish I could reach through and give you a real hug.
Posts: 5237 | From here | Registered: Nov 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Thanks for the prayers, suggestions, and words of encouragement.
I am still very stressed out about this situation. I just learned that my son's caregiver has upped her wedding plans by 6 months. It will not give us much time to find him a new home.
I'm told I may have to accept that he'll need to be placed far away. I CAN'T accept this. I don't want him to go live with strangers far away. Will the system "let" me keep my own son in my home until an opening in a group home comes through?? I'm afraid.
Child protective services was called to my home when Nicky lived here because his service coordinator felt he was unsafe with me. I doubt he will be allowed to live here with me as his sole caregiver while my husband is at work. So, I'll be forced to accept whatever placement comes up. This really, really upsets me.
Even if he IS allowed to come home and we get care providers to come in for a couple of hours per day, it won't be good enough. We did this scenario for two years before he was placed with his current caregiver and the people assigned to us would often not show up and quit all the time. We couldn't count on them.
My husband and I can't afford to pay anyone privately to help us.
I'm still praying, and still asking for prayers. Thank you SO, SO MUCH for all your support, Lymenet friends.
With love - Lymelady Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am thinking of you too and hope God comes through with a plan. My daughter works in a group home for mentally disabled adults. And a friend is a special ed teacher. I thought the schools had to take kids with disabilities irregardless of how non functioning they are. My friend changes their diapers when necessary.
I hope something comes through for you.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I will pray for your family. I cant imagine the pain you must be feeling right now. I cant tell you how much i want a miracle for your family.
Posts: 624 | From Oklahoma | Registered: Jun 2010
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posted
I'm praying for you all too Julie... Posts: 797 | From New York | Registered: Feb 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Continuing prayers for you and Nicky!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Julie, I am praying for your and for family.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Prayers for you and your family.
If I may ask the age of Nicky?
Is it possible to be in school all day?
I will pray and ask God to open the doors for you and your family.
We have a couple of state run schools as well as Catholic Charity run schools in our area.
Children with significant disabilities live there.
Your son must qualify for SSDI, right?
A group home would be a consideration with your youngest son as "legal" guardian
If something should happen to you and your husband.
Please keep us posted.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Can you afford to pay for an in-home Nanny?
Someone to take care of Nicky when he is home. Is there a special school he can attend during the day? I know our public school has children with disabilities similiar to this (Downs).
Are you sure he also doesn't have Lyme contributing to the autism.
I'm not very knowledgeable wish I could help more-
Your all In my prayers,
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi everyone. Nicky DOES attend school each day, and is in a summer program. He gets two weeks off at the beginning of summer and two weeks off at the end. He is eligible for the education program until he's 21. He is 11 years old now and is on the NYS Medicaid waiver program. This helps with his medical bills and makes him eligible for family care.
This works well and has been very good for him. He gets home quite early, though - well before my husband gets home from work. That's the time that he and I would be alone together. Also, on holidays he'd be home all day.
Finding a person who can be at our house when we need them to be here is almost impossible. We had this issue come up many times when he lived here. A person would tell us they could be here for 1-3 hours when I would need them all day, for example.
It's not as easy to find help for a severely disabled child as it is to find a person to help with "typical" children.
I am still crying. This situation is terrible.
About a possible Lyme connection - I don't know. Nicky displayed autistic symptoms from infancy. I wasn't infected until he was 5 years old. He was severely oxygen-deprived at birth, which is what I blame for his condition. Also, a geneticist told me that Down's children's brains are more susceptible to autism.
He WAS bitten by at least two ticks, though, when we lived in Maryland, but seems to have no symptoms of tick-borne disease. He was put on prophylactic antibiotics both times. The pediatrician told me she doesn't play around with ticks, so we were lucky there.
Nicky is here now, enjoying his piano toy. His caregiver took the day off. I love to have him home. I wish I could care for him properly and keep him with me forever! I love him so much, and I hate this disease that keeps me so weak and unreliable!
- Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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