My son has Down syndrome complicated by autism. He's a big strong boy, 8-years-old, and currently is suffering from chronic diarrhea.
Because of the diarrhea he isn't allowed to attend his special school and I have been struggling daily to take care of him or find someone who will.
I am very weak from Lyme disease - suffer from leg weakness, terrible headaches, etc. I often lose my ability to write, walk, and talk. My county of residence knows of my situation and they want me to get help for my son but really provide no resources. They have programs in place but no one to work them.
My son isn't safe to be with me alone. I collapse unexpectedly and at those times am unable to prevent him from getting into danger. Once I was immobile on the floor for an hour with my son running all over the house - a scenario I don't want to repeat.
My son's wonderful service coordinator and respite provider just called me with the news that my respite provider wants to provide my son a permanent home.
I am so happy yet so sad all at once. There's no guarantee it will work out - her home has to be inspected, etc. and it will be on a trial basis. This comes after I had a rant at God last Tuesday - I guess He was listening!
What happened was that I was alone with my son (Nicky) and he was extra busy. He nearly knocked the TV on himself, etc. I couldn't change him or feed him without a tremendous effort and I started yelling at God. To have a child with severe disabilities and then be struck down with terrible Lyme disease that has kept me sick for so long seemed so unfair at that moment.
Normally I try to roll with the punches but sometimes life punches once too often.
Anyway, I guess all I need from you all is your support as I really want this permanent placement to happen but there are a lot of hoops to jump through.
I also feel so weepy thinking that my 8-year-old son is too much for me to handle and I have to let him live somewhere else. His respite care provider is an angel on earth, though. I trust her to do a great job with him.
Thanks to you all for listening and letting me share. - Julie in NY
Posted by mississippilyme (Member # 11205) on :
LymeladyinNY,
I am sorry you've been dealt this unfair hand. God doesn't make mistakes. I know it must be terrible hard and frightening to go through these trails.
Maybe when you get help with your son, God bless him, you can get yourself well.
You didn't say whether you are seeing an LLMD and taking meds.
Let us know. We'll be praying for you and your son.
sherry
Posted by bejoy (Member # 11129) on :
I'll be sending you my prayers!
I feel for you with your mixed emotions over having your child cared for in a different home.
It is a good thing to have some room to take care of yourself first. You can't pour from an emoty cup, and you can't fill your cup when your child needs more than your cup will currently hold.
This is like when you get in an airplane and they tell you, "if we lose cabin pressure, put on your own mask first, and then secure your child's mask."
You won't be losing him, and what time you will be able to spend with him will have much more quality than the survival you have been able to offer while you have been so ill. I hope his placement works out well for you, and soon.
Are you aware that autism has been linked to Lyme? After you are feeling better, perhaps you can have him tested and treated as well, and things may improve for him.
Your experience of not being able to get up sounds a bit like an Addisonian crisis. That can happen for people when their adrenals are so exhausted from dealing with infection that they are not producing enough cortisol. You may want to ask your doctor to have your hormone/cortisol levels checked with a saliva test.
Good luck with this transition. I will be thinking about you while you manage until your son gets more care!
bejoy
Posted by Geneal (Member # 10375) on :
Dear LymeLadyinNY,
How difficult things must be for you.
I agree with the other posts. You must take care of yourself so that you can take care of your child.
Your child will be exposed to a new environement and new experiences, and you will be able to share that with him.
You will have time to rest and get well without worry.
It seems like a good opportunity for both of you.
I am sending you and your son healing, positive prayers and thoughts.
Please keep us updated on your progress as well as your sons'.
Geneal
Posted by bubbear (Member # 8976) on :
Prayers for you LLady and your son. I used to work with Downs Syndrome Children in St Augustine Fl. One of the most rewarding and Loving times in my life. I hope it all works out for you...I know it will
Posted by bettyg (Member # 6147) on :
lymelady, so sorry to read your sad story but courageous on your part trying to provide a better home for him; that's not selfish!
you need to care for yourself; once you've got that going, you hopefully will be includedd in his life still.
constant diarrhea: has he ever been tested for food allergies:
gluten...wheat, rye, oats, barley
casein ... dairy products
i was finally dx last year with both; have had chronic diarrhea for 30-36 years!
my best wishes for you both on both of you getting better.
i sent you my newbie links/advise; you may find some other options/links pertaining to your situation...hope so.
post as you need to; we do have lots of support here in SUPPORT section. may god ease the burdens placed on your shoulders for doing what is best for you/son at this time in your life. Posted by chiz (Member # 10301) on :
Dear Julie
My heart goes out to you and I shall put you in my prayers. Recently you comforted me greatly when you replied to one of my postings.
I am so sorry to hear about what it happening in your life. It does seem so unfair to have this horrible illness and a son with disabilities.
I can understand your mixed emotions. On a practical level it sounds a better solution (and great that you like the respite carer) but on an emotional level it must be hard to let go.
As a mother, you want to care for your son. But letting go doesn't mean that you are a bad mom. As others have said, you need to be healthy to care for others. Will you be able to see him often?
I can imagine the huge void this will leave in your life. But there are lots of hoops, as you say.
I pray things will work out for the best. There's never an easy answer for a complex problem. But firstly, I hope your health improves and then your ability to deal with other things will improve.
Best wishes Chiz
Posted by lymeladyinNY (Member # 10235) on :
Thanks, everyone, for your kind words and thoughts.
Yes, I do have an LLMD and I'm just starting rifampin today. I hope it helps but I've been on many protocols since getting Lyme and all have been just temporary relief so far.
Yes, I'd heard recently that autism and Lyme are linked. I assume I got Lyme when Nicky was 5 years old, though. That's when I had a tick bite on my abdomen. My LLMD thinks I've had Lyme since I was a teenager because I've had thyroid problems, fibromyalgia, chronic fatigue since then. I did grow up on a farm in central NY.
I hadn't thought of getting Nicky tested for Lyme but once he was given prophylactic antibiotics when his pediatrician in Maryland removed a tick from his thigh.
I guess I've been in denial about the possibility because I'm already overwhelmed. I have 2 other sons and was pregnant with the third one when I got bitten in 2003. He tests positive but no symptoms right now. My middle son had a tick removed from behind his ear when he was 2. I'm so glad we moved from Maryland. There are ticks everywhere there.
My LLMD did mention tired adrenals a few times and gives me homeopathic remedies. I didn't know that adrenal exhaustion will cause a person to collapse.
No, Nicky hasn't been tested for food allergies. His respite care provider lives on a farm and Nicky tends to put things in his mouth he shouldn't - as you can imagine, a farm is very dirty. I don't know how you stood having diarrhea for so many years, bettyg. My heart goes out to you!
Yes, I can see Nicky as often as I want (or can!) as my husband and I will still be his legal guardians. In a practical way it's all for the best, but in an emotional way it's the worst!
Down syndrome people are so wonderful and loving. I've been blessed to have him and wouldn't trade a thing - except having Lyme disease which prevents me from giving the care I want to give!
Again, thanks to you all for listening and sharing. God bless! - Lyme Lady
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