Looking for reassurance in an incomprehensible time

[Teaching3bears]

Sorry if this post does not make sense.  I am so tired and scared and lonely. I have posted before about my 16-year old who has severe special needs and very bad sleep issues lately.  The past few days he has hardly slept at all and mostly just during the day.  We got free tickets to a classical music concert for yesterday and I was looking forward to going somewhere nice since we haven't been in a long time and looking forward to going somewhere as a family.  I knew there was a chance that DS would be asleep but he was awake and it was a nice day after a long winter.  DS has been in a good mood for at least a couple of weeks.  Yesterday, immediately after breakfast he started screaming really loudly, stomping his feet so the whole house shook and punching himself in the head.  He calmed after an hour and we thought we might go but he was the same after lunch.  We thought he might calm in the van but when we got out he was screaming.  He was worse outside.  Usually he is better outside but he was screaming so loud people could hear him for blocks.  He looked in severe pain.  People were in shock.  We went home and did not go to the concert but I almost wanted to stay outside in front of people because i feel so alone with his pain at home.  We have taken him to a pain clinic, and over 20 doctors during his life.  We have put him on many special diets etc. He is a wonderful boy who is really suffering and I am a failure of a mother.

I kept telling him to stop hitting but at the end of the day his face is all black and blue and the shape is awful, worse than a boxing match fighter or a fight victim.  THIS is where I really need the reassurance.  I know the black, blue and red will go but it is the shape I am so worried about.  Please don't tell me that it will stay that way or get better but not completely even if you know about these things and know that is what will happen.  Lie to me!  I am feeling really really awful about life right now.  I want to vomit and I can't stop crying even though I have been so strong and developed such good coping skills over the years.  

I want him to get better.  I want him to be pain-free.  He had such a beautiful face.  Please tell me it will go back to being beautiful.  There is so much violence and terror in my life and my life is so weird and horrible.  I have absolutely nobody to talk to and it's hard for other humans to relate to our life and hard for me to be around other families without feeling jealous.  DH who once upon a time was my best friend is really mean and belligerent whenever I talk to him now.  His criticism and yelling has brought me down.

Last night my son got calmer sitting in the backyard in the mud and he stayed there for until dark even though it was cold and we couldn't get him inside until late.  He also calmed with a hot water bottle on his belly but did not fall asleep until 6:30 am.  He had not slept in almost 48 hours.  My son is a wonderful person with a heart of gold.  I tell him every day that he is very valuable to me.  He is extremely intelligent and understands things more deeply than the average well-educated adult ever could.  He is not dispensable.  He has a lot to contribute to the world but is locked in the prison of his body.  I have been praying a lot this week so why are things worse?

 

 

 

 

[freesia]

Oh, I just want to come and give you a hug. At one time I worked at a school for autustic children and young adults. I know what it is like on a small level--but not as a mother. 

You are not a terrible mother. I have read your past posts and you love you children so much and have endured a lot. You are not causing his pain  you are trying to give him a good life and education you have turned your life upside down and sacrificed for him  I am sure you are not perfect, but you are a good mom  

I think you have said that respite care isn't available where you are--but if I am wrong, I really think you need a break. Of course I don't know the details of what is causing the stress btwn you and dh, but the situation with your sons  cannot be easy on him either. You two have been under constant stress for a long time and I don't think it is unusual that it is causing problems. That said, he should not be mean it verbally/emotionally abusive to you. Is there a counselor that you two could see?

please be kind to yourself. I am so so sorry you missed the concert. It is understandable that you are grieving that. 

[Selkie]

Many, many hugs to you. I am so sorry. You are a great mom who is living with extreme stress and you need someone to help you.

Do you have a trusted doctor? If so, could you explain the situation to him/her, tell them that you are (understandably) at the breaking point, and see what resources they could recommend to help you?

[almondbutterandjelly]

((hugs)) You are not a failure of a mother.  You are a wonderful person.  Your life is just really, really, really hard.  I am praying for you.

[Cindy in FL.]

Firstly, you are not a failure . It’s obvious that you love your ds deeply and want the best for him. I am so sorry that your precious boy is suffering so much, and that it is wearing you down and breaking your heart. I hope and pray that all of you can get the help that you so desperately need, and that your son’s face heals quickly!

 

[Annie G]

I’m so very sorry you’re feeling defeated. It’s clear you are a loving, caring mom.  I also hope you can find/confide in a trusted doctor to help you. 

‘Hugs to you from afar.

[maggie18]

I don't know the details of your situation, but can your son go to a day program for people who have disabilities? It sounds like you are overwhelmed, and I can tell you are a caring mom! You are not a failure-you are stressed out and need help.

Edited April 22, 2018 by maggie18

[oneddmanybooks]

I am so sorry. I remember a little from your previous posts. I think you said that when you tried a day program, they fed him food that he shouldn't have had and that it made things worse. You sound like a wonderful, caring mom. I am so sorry that you feel so alone. I am praying especially for you to be able to find support during this very difficult time. Hugs.

 

[Junie]

Hugs to you and your son.

Is there a reason you don't take him to the ER when he is in such severe pain?

 

ETA:  I'm not saying that to be critical; I'm genuinely curious.  I suffer from chronic migraines and am in pain all the time.  Some times are worse than others.  I'm wondering if there are meds that would lessen the pain or tests that could be done when he is in such extreme pain.

[6wildhorses]

I am so sorry that you are going through this. You are not a failure. Raising a child with special needs is just so difficult. My son (16) is not as severe, but he will likely live with me forever. I think a lot about what is sustainable. In other words, I think about what I can sustain over the course of my life, and what services he will need so I don't reach my breaking point.

It sounds like your current situation is not sustainable. I would suggest that you make it a priority to find services for your son, even if it means relocating. I would open myself up to more options, and I would extend my research far beyond what I had explored before. I have a hard time thinking about the future. My son means the world to me, and I want him to always be surrounded by people who love him. I'm going to have a hard time trusting other people with his care when he's older, but I know it can't all be on me.  

I've had to learn to make myself a priority, and it's been hard for me. But if I don't take care of myself and manage my health and stress, then I won't be able to continue to care for my son. I've been doing yoga and meditating, and it's helping me manage my stress better. Sometimes life gets unmanageable, though, and we need to revamp things, so life becomes manageable again. No amount of meditating will help if you're in an impossible situation.

It sounds like your husband has already passed his breaking point and that you are alone in this. What a tough place to be in. I'm hoping that means he will be amenable to ideas of how to improve the situation, even if the ideas could mean big changes in your lives.

I want you to remember that your health and happiness are important too. You are important and valuable, just like your son. I hope you can find a way to make things better for everyone, including yourself. I know there are no easy fixes or answers, but I hope you can find a way.

[happi duck]

Many (hugs)

[ktgrok]

Hugs.  I know you worry about new medication making things worse, but honestly, can it get worse than physically beating himself bloody? Can you have a sedative to give him when he's like that, and pain medication? If I were beating myself and injuring myself and causing myself pain I'd want someone to sedate me so I could rest and get past it and not hurt myself further. 

[Kanin]

Sending you millions of hugs. <3

[Innisfree]

First, hugs. I am so sorry things are so difficult.

Next, have you been able to try genetic testing? Might that help identify which medicines might help your son instead of making things worse?

I think you do need to identify some sort of help. Have you looked into developmental disability waivers? There is a long waiting list here,  but your ds would surely be a strong candidate for assistance. Here, that would get you respite care, at a minimum, plus other services depending on your situation and your son's age. You probably have already tried that route, though.

Is there something like a community service board? Social services? A church which could help out, if you trained people to help your son while you get a break?

I wish I could come offer help in person. 

 

[mominco]

(((hugs))) You are a wonderful mother!

[Teaching3bears]

So, one mystery a bit solved.  My second DS was sleeping a lot yesterday and we almost didn't notice.  Then, my youngest, who doesn't have special needs has a sore throat and fever.  Now my 16-year old is coughing and sneezing a bit.  I think his stomach and throat were hurting yesterday.  It's just his response to pain!  While my 11-year old just wants to lie down in bed, he was screaming and punching.  

We have sent him to weekend day activity programs and he likes it  but he somehow manages to eat toys while he is there and this causes him great discomfort for a couple of days.

We have some funding for respite.  I just have to hire someone.  I have devoted so many hours over the past few years to looking for someone and I am tired and it is hard on my kids to have a bunch of people come for interviews but not work with them.  The people I liked most ended up finding full-time jobs or moving.  There were some people who felt like my kids were too much work.  There were some that were just not physically fit enough to chase a fast child and some who were just plain awful and were probably not able to find much work anywhere doing anything but they were desperate for money.  We had someone a few years ago who I really liked but she was a student and when she graduated she got a full time job and then moved away.  I liked talking to her about my boys because she was very positive about them but she was not great at watching them.  We did leave her a few times alone with them for a couple of hours but after that she said she did not feel comfortable and wanted me to stay in the room with her.  I really like being with them when they are in a good mood.  A few years ago we paid a lot and sent them to a therapy centre but they would always call and ask me to bring them home when they screamed.  

We have seen a few marriage counsellors and I hated it and I think that it had a really really bad effect.  Things were a lot worse right after.  I will not go again!   One therapist told us to talk to each other less.  My DH took this advice and it seems he continues to follow it.  Not fun!  

We were told by a couple of doctors not to give my son Tylenol because he has a couple of MTHFR snps.  He only has one of each though.  We did state of the art genetic testing with my sons and nothing was found.  The MTHFR testing was not part of that.

I don't mean to complain so much and be so negative.  DS's mood is so much better this evening!  He has a big smile on his face!  I just wish he did not have the big bumps.  That is really bothering me.  Please tell me again that they will go away even if you don't think they will!

I think what I really need is a friend to talk about things out loud but I don't have time and who would really want to listen to all this.  Thank you all for reading this.  It makes me feel less lonely.

 

 

 

 

 

 

[Miss Tick]

Hugs Mama.

[Innisfree]

I'm so glad your 16yo is feeling better today!

Don't worry about complaining here; we all serve as sounding boards for each other. Homeschooling and having kids with serious special needs can both be very isolating situations. That's one reason I love this board-- it gives us a very welcome chance to connect with others when it's hard to get out physically.

 

[Rosie_0801]

Mothers aren't all powerful, as much as we might like to be sometimes.

((hugs))

 

[ktgrok]

If you can't give tylenol, what about ibuprofen or even something stronger? For when he is in a lot of pain? And lots of people with MTFR mutations have taken tylenol. I get worrying about possible side effects...but would they be worse than the known pain? Maybe talk to the doctor about what those side effects would be, that he is worried about, and what other pain control options you have?

Not saying you did anything wrong, just that the doctors are not the ones dealing with the pain! Not nice to leave you with no options for your son. 

[Junie]

Certainly don't feel bad about talking with us about this.  More hugs.  I wish I could do more.

I'm so glad he is feeling better.

I've had headaches that were so bad I had to put a pillow in my mouth to keep from screaming.  And sometimes I want to just squeeze my head because the counterpressure feels good.  

It seems that he can't communicate effectively with you about what helps.  Maybe heat or ice?  Hot showers are my best friend when I'm in pain.  Is it possible that something like that would help him?

I'm just trying to brainstorm with you about ways that you can help your son.  I can tell that you care so much about him.

 

[regentrude]

Hugs. No advice, but one thing is certain from your posts: you are an awesome mother! You just have kids with lots of challenges.

[Rachel]

You are a wonderful mother who deeply loves her children. Repeat after me: “I am not a failure”. 

I can’t offer advice because I don’t know where to start but I will say a prayer for you and for your family. 

[Garga]

The facial swelling and bumps will go down.  It'll take some time and then he'll be back to his old good looks.  

You need to hear it again: you are not a failure as a mother.  Just reading about your posts makes me cry and makes my stomach hurt.  I hurt for all of you when I hear about your sons screaming and unable to communicate their needs.  I hate it for you and them that their minds are trapped in their bodies.  But it's very clear that you love them dearly.  It's also clear that your life is impossibly difficult and I wish I could help you.  Know that we all wish we could help you.

And again, his face will be fine.  It'll heal up.

[Mimm]

I am so sorry. :( I can't imagine dealing with all this. I believe his face will go back to normal. People recover from that kind of thing. I hope you and your husband can get to a place of mutual support again. It sounds like you desperately need to lean on each other.

[Wishes]

The swelling will go down. Your sweet boy's face is still there. Many, many hugs.

[Pegs]

I supported my mother through a mental health admission and meth withdrawals which involved a lot of headbanging and other self-injury. It was gut-churningly awful to see her covered in self-inflicted injuries, her eyes almost swollen shut. I can't even begin to imagine seeing my own child in such a state. I am so, so sorry.

Your beautiful boy will recover his looks. Wishing you strength and solace in the meantime.

[J-rap]

Wow, I think you sound like an amazing mother!  I'm glad you were able to figure out the most recent problem.  It sounds like changes need to happen though in order to help inner peace (both for you and your dh) and your marriage.  Also, just because marriage counseling didn't work once, doesn't mean it won't work ever.  It takes the right person.  A lovely man we know (who actually has quite severe ADHD and is married) recently told us his story of the years of escalating problems he and his wife were having due to his unique personality and the stress it caused on the marriage.  They finally decided to see a marriage counselor, who after just a few sessions told them there was absolutely nothing he could do to help them and recommended a dissolution of the marriage!  They went to see another and another and another, and finally, the SIXTH one "clicked" and had such wisdom for them that their marriage not only was saved but was completely turned around.  This man is forever grateful for that sixth counselor!

And yes, your son's face will heal!  The face tends to show a lot of bruises, but just wait.

[ktgrok]

I just thought of something that might help you feel better about his face! People who TRY to alter their features to escape the law or whatever have a very hard time doing so, and are often unsuccessful. So certainly this type of thing won't leave lasting marks. 

Also when I was young my uncle got mugged and beaten badly. He ended up in the hospital, and his face was a mess. But it all went back to normal, and once it healed you would never have known it happened. 

I'm sure your son will be the same.