sue2ndtimemom
05-01-2009, 03:30 AM
I have a beautiful, sweet son who is 8 yr. old and has severe autism. He loves to hug, kiss us on the cheek and is very cuddly. He is non verbal and not potty trained but he has great comprehension. His eyes speak volumes and he is very intelligent. On the flip side he is extremely destructive, covers the house in poop, trashes the house, gets out of the car seat and kicks me in the head when he's mad and is very strong willed. Non of these things have caused me to feel as desperate as I do now. My DH had a stroke last week and his right side has no movement though he can feel everything that touches his right side. He will be in a Rehab facility for 3-4 months and may or may not be able to walk again. I'm on Disability and if my FIL were not helping us we would be living in my minivan. I have a 9 yr. old that helps with my autistic son David, but he is only 9 yr. old. Some mornings when David doesn't want to go to school he will lay on the floor and go limp and sometimes won't let me give him meds either. He's 115 lbs. and tall for his age and I have a really bad back and cannot lift him. My FIL has been helping me when he can but he is 78 years old and can't handle David for very long either . My DH is 52 yr.s old and fell last year and lost some of his strength. Since then he has had trouble tackling David when necessary but he was still doing it. Now with the stroke, he will possibly never be able to help with David again. The fact is I can't control him when he doesn't want to be controlled. He is cooperative probably half the time but when he goes limp on the floor I can't pull him up.
I called the Regional Center and told them that I can't handle him and that we need placement for him. The case worker said that maybe by Monday they can have him placed in a facility. My DH and I have talked about this as a possible eventuality but I thought it might be years down the road. Both of our fathers and another dear friend have been telling us for over 3 years that the day may come when he might have to be placed but at that time I wouldn't even entertain the thought. My heart is breaking. Everytime I look at him I cry. My 9 yr. old is acting out (can't blame him with all this going on with 2 members of our family) and has even threatened to go crazy and lose it . Our house is full of sorrow but I honestly can't handle him by myself. All of my family are out of state and my DH's Dad is 78 yr. old. All of my friends live about 45 minutes away and have a lot going on in their lives too. Please if anyone responds be gentle because I'm hanging on by a thread.
I called the Regional Center and told them that I can't handle him and that we need placement for him. The case worker said that maybe by Monday they can have him placed in a facility. My DH and I have talked about this as a possible eventuality but I thought it might be years down the road. Both of our fathers and another dear friend have been telling us for over 3 years that the day may come when he might have to be placed but at that time I wouldn't even entertain the thought. My heart is breaking. Everytime I look at him I cry. My 9 yr. old is acting out (can't blame him with all this going on with 2 members of our family) and has even threatened to go crazy and lose it . Our house is full of sorrow but I honestly can't handle him by myself. All of my family are out of state and my DH's Dad is 78 yr. old. All of my friends live about 45 minutes away and have a lot going on in their lives too. Please if anyone responds be gentle because I'm hanging on by a thread.
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Mira11
05-01-2009, 04:35 AM
Sue - I am so glad that you found us. I have a 21 year old son and have seen a lot of circumstances with families with kids with autism and we too have been on a roller coaster ride at times. There is NO QUESTION in my mind that the best thing for your son and your family is for you to proceed to do a placement for him at this time. From what you are describing, this has become an unsafe situation for everyone and it is FAR BETTER to do the placement before anything tragic or very damaging occurs.
As I started reading your note, I right away was going to suggest getting linked up with a reg case manager and request an emergency placement. Then I saw, it's already in the working. It's not like you won't be able to see him, because you will. You ALL need the help that you are requesting. I hope that your husband does well in rehab and shows good improvement.
Please keep us posted about the placement and I'm glad you found this board.
As I started reading your note, I right away was going to suggest getting linked up with a reg case manager and request an emergency placement. Then I saw, it's already in the working. It's not like you won't be able to see him, because you will. You ALL need the help that you are requesting. I hope that your husband does well in rehab and shows good improvement.
Please keep us posted about the placement and I'm glad you found this board.
MOM23ANGELS
05-01-2009, 06:29 PM
hello sue,
as i read your post it took me back a few years as i have a cousin who was placed in a home. the scenario was somewhat similar in that it was getting entirely too difficult to care for her at home. as a parent, i know this is a very difficult decision but rest assured the BEST decision. you must think of the health of your entire family, and recognizing that, was the first step.
my cousin has been in her current placement for at least 15 years now and let me tell you she is getting along beautifully. she is in a house with 8 others. she goes to a wonderful workshop every day and goes on more outings than i could wish for. her diet before placement wasn't the best as my aunt tended to allow her to make her own food choices and usually not the greatest. she eats 3 well balanced meals and healthy snacks everyday. they eat "special" desserts a couple of times a week. (usually a piece of cake or pie) she also comes home for holidays and 2 weekends a month.
another thing to think of is the fact that you have a say in his placement. so many people do not have an advocate in their corner and are not placed appropriately.
good luck and stay strong.
as i read your post it took me back a few years as i have a cousin who was placed in a home. the scenario was somewhat similar in that it was getting entirely too difficult to care for her at home. as a parent, i know this is a very difficult decision but rest assured the BEST decision. you must think of the health of your entire family, and recognizing that, was the first step.
my cousin has been in her current placement for at least 15 years now and let me tell you she is getting along beautifully. she is in a house with 8 others. she goes to a wonderful workshop every day and goes on more outings than i could wish for. her diet before placement wasn't the best as my aunt tended to allow her to make her own food choices and usually not the greatest. she eats 3 well balanced meals and healthy snacks everyday. they eat "special" desserts a couple of times a week. (usually a piece of cake or pie) she also comes home for holidays and 2 weekends a month.
another thing to think of is the fact that you have a say in his placement. so many people do not have an advocate in their corner and are not placed appropriately.
good luck and stay strong.
boysboysboys
05-05-2009, 03:50 PM
How are you doing Sue?
When I read your post a few days ago I got tears in my eyes. I have twin 6 year olds who both have autism and there are days when I feel like I may have to put them in a home. I have been thinking about you a lot the past few days. I hope you are doing okay. It could end up being one of those things that turns out to be better for everyone in the long run, though I know it must be extremely difficult right now. Hang in there....*hugs*
When I read your post a few days ago I got tears in my eyes. I have twin 6 year olds who both have autism and there are days when I feel like I may have to put them in a home. I have been thinking about you a lot the past few days. I hope you are doing okay. It could end up being one of those things that turns out to be better for everyone in the long run, though I know it must be extremely difficult right now. Hang in there....*hugs*
Mira11
05-05-2009, 07:25 PM
Sue - have been thinking about you today and hope that things are all right in your situation now. Has there been any more word about a placement? Try to think of it as taking one step at a time to get to a needed better and safer life for you and your family.
Let us know how you are.
Let us know how you are.
KMVC
05-08-2009, 01:53 AM
Sue, my heart goes out to you. We got as close to placing our autistic twins as filling out the paperwork, before being put on a higher need level with the department of developmental disabilities, at that point we were given additional respite which made all the difference in the world. Have you applied with S.S.I. for help with respite or medical? Is it possible to do a shared parenting program in your area? I know how exhausting it can be with the destructiveness and the messes to clean up. My boys used to do the poop smearing and I Have had to learn to fix many things. It seems like your constantly putting out one fire after another. Are you a member of a church or organization that could help find volunteers that could help you out with breaks or cleaning? Do his teachers or someone at his school know of any? Just some thoughts, I hope it helps and does not put additional pressure on you. I know how heartbreaking that decision is. My prayers and thoughts are with you.
Kathy
Kathy
therapist1
05-19-2009, 11:20 PM
Hi. I am a speech therapist and hear your desperate need for help. How does your son communicate? (signs, pictures, etc.). Do you do any social stories with him? If he has good comprehension, he can go far. He must qualify for some PCA help so you can have a break. Do you have a social worker? He definitely is communicating that he is scared, confused, needs to know he is loved and nothing will happen to you or him. I would not give up on him and would not put him in a facility. The smearing of poop is sensory related and typical. Does he clean it up or do you do it for him? What techniques have you used? I am here to reach out and help you in any way I can by giving you ideas and techniques. I have taught classes on how to communicate with your child and the success rate has been high.
He is a little boy stuck inside this body that won't let him do what he wants it to do. Don't give up. Therapist
He is a little boy stuck inside this body that won't let him do what he wants it to do. Don't give up. Therapist
sue2ndtimemom
05-26-2009, 02:49 AM
I have appreciated reading all the comments and support. Tomorrow or Wednesday I will be taking my sweet son David to the facility. I am freaking out and dreading doing this. It feels so cruel and sad. He is so cuddly and we have such a deep bond. I love to hold his face and kiss his cheek. I don't know how I will get through it but I have to believe God will help me. Please pray that this goes according to God's will and that David doesn't feel abandoned. We live in California and the Regional Center is handling the placement. If circumstances change, it can be undone easily. Sorry to unload all this but I'm dieing inside.
mscat40
05-26-2009, 05:49 AM
My thoughts and prayers are with you and your child, David.
prico54
05-29-2009, 06:59 AM
Sue, My heart breaks for you. I have no idea how you must feel but just reading your post speaks volumes. My 4 y/o grandaughter has Autism and it has not been easy but we are fortunate that she functions fairly well. She is starting to go potty and it has been a long road for that, but I know we are lucky. She won't go poo on the potty but one step at a time. She does speak. She knows who everyone in the family is and all our names. She goes to pre school and is doing great there. She can speak but you have to be around her a lot to understand the words because it almost sounds like someone speaking that is deaf. Her words are different but we thank God she has words. It is so amazing the things you take for granted before Autism came into our lives. I raised 5 healthy children and took it all for granted, not really but it seems that way now. She can't carry on a coversation but she can answer questions. I don't know where you live but where we live there are really no facilities available for special groups with other autistic children. Anything that is appropriate is miles away, many miles. Enough about me. I hope you can let go of feeling guilty about placing David. You are doing all you can and I know that even with all the things Isabelle can do , she is more than a handful when she has her temper tantrums. You can only do the best you can and you can't beat yourself up. God Bless you , and stay in touch. My prayers are with you and David. Please don't blame yourself , please.
Mira11
05-30-2009, 10:49 PM
Sue - I hope that your son is settling into the facility. Please tell us about it; I hope it meets your expectations. You have been in my thoughts.
visha
06-11-2009, 08:58 PM
Sue all the best & prayers for David, you & your family:angel:
My only child Seb is going through the same woe's and social services are insisting i place him in residential school but with the help of my son's doctors and school support,its been agreed he'll undergo intensive 3months psychiatric assessment to figure out the most suitable medication to meet my childs need.But if this intervention fails then residential might be our only option[and i dread this cos the only suitable placement is very far from our home] also we've never been apart for long[he is 9yrs old with autism,adhd,moderate-sever learning difficulties].
Hang on in there & good luck.(((((((hugs))))))
My only child Seb is going through the same woe's and social services are insisting i place him in residential school but with the help of my son's doctors and school support,its been agreed he'll undergo intensive 3months psychiatric assessment to figure out the most suitable medication to meet my childs need.But if this intervention fails then residential might be our only option[and i dread this cos the only suitable placement is very far from our home] also we've never been apart for long[he is 9yrs old with autism,adhd,moderate-sever learning difficulties].
Hang on in there & good luck.(((((((hugs))))))
sue2ndtimemom
06-24-2009, 06:59 PM
Thank you all for the heart felt responses. We placed David in a group home on June 1st. It is like a 4 bedroom house and there are 2 beds per room. Because of David's behavioral issues he is in a room by himself. The staff there are extremely loving and have been working with difficult children for 20 years.
Their rule is that for 30 days I am not allowed to come over to the facility. This is to give David a chance to get adjusted to the new place. I've been able to see him 3 times this month (once for a school performance and once before his IEP and once when I had to sign papers at his doctor's office). Each time I just held him and hugged him and kissed him and cryed. It is so sad because he just bows his head and burrows in into my chest. It just breaks my heart. When I saw him for his IEP at school, he took my hand and tried to get me to take him home :(. His aide tells me he cries a lot and has been throwing more tantrums. The idea of him being so sad just kills me. Many nights a week I am up half of the night crying and feeling like I don't really want to go on. I have to go on. I have another child at home, my husband is in a rehab facility and is very lonely and will not be home for several more months and David still needs me. After the first 30 days, then I can have overnight visitations with him some weekends. I miss him so bad my teeth ache. I feel it down to the very core of my soul. I think because of David's autism we have had such a deep bond on an emotional level. He is non-verbal but is so expressive and communicative. He is the cuddliest person I've ever known. Please pray for us. I am going to see David's Psychiatrist on Friday and see if he can help me apply for In-Home Supportive Services. If the Dr. fills out the section that states that help is needed in the home for David's safety and the safety of others, it might get approved. If it got approved, then a person would be at our home several hours a week to help care for him. My husband will need help when he gets home too. My husband can barely move his right side but mentally he is fine. Thanks for all the support.
Their rule is that for 30 days I am not allowed to come over to the facility. This is to give David a chance to get adjusted to the new place. I've been able to see him 3 times this month (once for a school performance and once before his IEP and once when I had to sign papers at his doctor's office). Each time I just held him and hugged him and kissed him and cryed. It is so sad because he just bows his head and burrows in into my chest. It just breaks my heart. When I saw him for his IEP at school, he took my hand and tried to get me to take him home :(. His aide tells me he cries a lot and has been throwing more tantrums. The idea of him being so sad just kills me. Many nights a week I am up half of the night crying and feeling like I don't really want to go on. I have to go on. I have another child at home, my husband is in a rehab facility and is very lonely and will not be home for several more months and David still needs me. After the first 30 days, then I can have overnight visitations with him some weekends. I miss him so bad my teeth ache. I feel it down to the very core of my soul. I think because of David's autism we have had such a deep bond on an emotional level. He is non-verbal but is so expressive and communicative. He is the cuddliest person I've ever known. Please pray for us. I am going to see David's Psychiatrist on Friday and see if he can help me apply for In-Home Supportive Services. If the Dr. fills out the section that states that help is needed in the home for David's safety and the safety of others, it might get approved. If it got approved, then a person would be at our home several hours a week to help care for him. My husband will need help when he gets home too. My husband can barely move his right side but mentally he is fine. Thanks for all the support.
Mira11
06-25-2009, 02:17 AM
actually at david's young age you should be eligible for in home support services for many hours, daily. i do hope that this can come through for you. take care of yourself.
DannysMum
06-25-2009, 07:24 PM
Oh Sue, what is the answer? I've just re-read your first post, life sounded unbearable...and I've just re-read your last post, life sounds just as unbearable. I pray that happiness comes for you and your darling little boy...why is life sooo cruel sometimes? You've got to do what is best...what is that? My thoughts are with you...
sue2ndtimemom
08-01-2009, 01:14 PM
Hi everyone, I am sad to hear some of you are in similar positions and my heart goes out to you too. David has lived in the group home for 2 months now. He comes home every other weekend and I count the days till the next visit. Our first weekend with him was 4th of July weekend. Since it was a holiday we got him Thursday night instead of Friday night and kept him till Sunday night. The visits go really well but David does have sobbing spells, as do I. When he first comes home he is stand off-ish for the first couple hours. I just keep loving him up and telling him how much I love him and miss him. He warms up and then we have a beautiful time together. I can't get enough of looking at his beautiful face and touching his cheeks. He has such a sweet tender side to him.
After having been in the group home for 2 months his mess making has cut down by 70%. His tantrums are about the same as they always have been, a few times a day. I'm copying any advice they give me on things that are working for them there. There are only 4 kids at the group home so he gets a lot of individual care. They obviously care a lot about him.
I see him every other week because he can't handle seeing his Dad in the rehab facility. My husband has no friends and gets so desperately lonely there. The best compromise we could work out is to have 2 weekends a month with David and the other 2 weekends a month we visit my husband at his rehab. I see my husband 5 days a week but his facility is 45 minutes away so I spend a lot of time driving.
It's so hard to be away from David for 2 weeks between visits. The second week I feel like the walking dead. I know it won't be like this forever and that God is carrying me through this. Hopefully I'll get approved for In-Home Supportive Services and get 15-20 hours of help a week. Then David can come home permanently!!!!!!
My husband has been living in the rehab center for 3 months now. It's looking like he'll be there for several more months. He is able to move his right leg now but can't bare any weight on it. His right arm moves a little but his right hand doesn't move at all. Mentally he is great and I work really hard to help him keep his spirits up. He is one of those shy computer types and has no friends to visit him.
Thank you for the kindness you all have shown.
Sue
After having been in the group home for 2 months his mess making has cut down by 70%. His tantrums are about the same as they always have been, a few times a day. I'm copying any advice they give me on things that are working for them there. There are only 4 kids at the group home so he gets a lot of individual care. They obviously care a lot about him.
I see him every other week because he can't handle seeing his Dad in the rehab facility. My husband has no friends and gets so desperately lonely there. The best compromise we could work out is to have 2 weekends a month with David and the other 2 weekends a month we visit my husband at his rehab. I see my husband 5 days a week but his facility is 45 minutes away so I spend a lot of time driving.
It's so hard to be away from David for 2 weeks between visits. The second week I feel like the walking dead. I know it won't be like this forever and that God is carrying me through this. Hopefully I'll get approved for In-Home Supportive Services and get 15-20 hours of help a week. Then David can come home permanently!!!!!!
My husband has been living in the rehab center for 3 months now. It's looking like he'll be there for several more months. He is able to move his right leg now but can't bare any weight on it. His right arm moves a little but his right hand doesn't move at all. Mentally he is great and I work really hard to help him keep his spirits up. He is one of those shy computer types and has no friends to visit him.
Thank you for the kindness you all have shown.
Sue
nchantng
08-02-2009, 02:07 PM
Dear Sue
I just read through this thread for the first time today and wanted to post to you just to let you know how much your story touched me. My experience is not with autism but my teenage daughter has her own medical struggles. But, I don't want to make this post about me, but rather to acknowledge you and the love and support that you are showing your family. I can't imagine how difficult it must be to have your husband in one facility, another child to take care of and then your beloved son David. Reading how you describe your interactions with him make me cry as the love that you show him can be felt in your posts. What a loving person you must be! I hope that you too get support and care as you carry so much of your families burdens. Sending you warm hugs - Heather:wave:
I just read through this thread for the first time today and wanted to post to you just to let you know how much your story touched me. My experience is not with autism but my teenage daughter has her own medical struggles. But, I don't want to make this post about me, but rather to acknowledge you and the love and support that you are showing your family. I can't imagine how difficult it must be to have your husband in one facility, another child to take care of and then your beloved son David. Reading how you describe your interactions with him make me cry as the love that you show him can be felt in your posts. What a loving person you must be! I hope that you too get support and care as you carry so much of your families burdens. Sending you warm hugs - Heather:wave:
Mira11
08-04-2009, 03:15 AM
sue - i truly feel for you having to only see your son every two weeks. i was wondering why you cannot visit him there just during the week? i'm sure he would love to have more contact with you and i'm sure it would help the pain in your heart as well. it doesn't make sense that you couldn't go to his house for regular visits?
it broke my heart when you said that david cries a lot and throws tantrums more. i am certain that if he had more contact with you, he wouldn't be in such torment. i hope you can work this out, for both of your sakes.
it broke my heart when you said that david cries a lot and throws tantrums more. i am certain that if he had more contact with you, he wouldn't be in such torment. i hope you can work this out, for both of your sakes.