My husband and our disabled son

[MJJean]

My mother was born with severe physical deformities and she was one of only 4 people in the world at that time with her specific disability. I loved my mother and thought she was one of the most amazing women I have ever met. I spent a lot of my early and late childhood as well as my adolescence caring for her physically. Dressing, bathing, toileting, giving her meds, cleaning post-op wounds, etc. I spent a LOT of my childhood in doctors offices and ER's. I didn't mind any of it. She was my mom and my inspiration.

 

That said, I went to a high school that was on a single floor. Since we had no stairs we were where the disabled kids were sent to school. Part of one of my classes was volunteering to help those kids. Despite my mom being disabled I was very uncomfortable. It's hard to walk into the classroom of disabled kids. There are so many thoughts, feelings, instinctive responses to the different. It's normal. And, with compassion, one does get much more comfortable over time. Some of those kids are a real hoot and you start looking forward to seeing them.

 

There are two problems I see here.

 

One is that you and your husband aren't talking about your sons disability and dealing with all of the feelings. Your husband really does need to meet other parents with similarly disabled kids and talk with them. He also needs to be allowed to feel anger, hurt, disappointment, etc. He also needs to come to terms with it and lovingly embrace your son as he is. Other parents, support groups, activities, counseling...do it all if you can.

 

The other is the new baby idea. I don't know your sons disabilities and I am no doctor, but I do know that parents of children who aren't neurotypical often have other children who aren't neurotypical. It's entirely possible your next child could be similar to your son. Have you spoken to a genetic counselor and had the appropriate genetic screening on yourself and your husband? If not, it's something you might want to consider.

[pink_sugar]

I don't think SadMom's son is so severely disabled that he needs to be in a home for autistic adults. It does sound like he has some challenges and hurdles ahead, but as the OP mentioned, her son isn't fully autistic. I remember being 3-4 years behind in grade school academically. It took several years of summer school, tutoring, homework club etc etc to get me where I needed to be academically. I had a learning disability. I am now a successful 25 year old adult with a bachelors degree, a skilled writer and have a semi decent job. I think the OP and her husband just need to find a way to work together to get their son the resources he needs to succeed. Many people with mild autism go on to lead successful lives.

Edited January 20, 2015 by pink_sugar

[Sad mom]

We had another "guitar in the office" incident on Friday. I couldn't handle it and packed our stuff. Now my son and I are at a motel until tomorrow night. My son started asking for my husband within an hour of being gone... That was difficult. All I know is I can't do this anymore. I can't watch my sweet little boy be treated this way. I won't tolerate it!

[eye of the storm]

Sad mom my heart aches for you. You can't stay in a hotel. Contact an attorney today. I am not advocating financially gouging your husband. I am advocating you get all of your rights and your son's rights.

 

I am reaching out to you with all the positive energy I can send.

 

You are doing exactly what a good mom does. You are protecting a child that cannot protect himself.

 

May I ask what your husband said when you were packing? Did he acknowledge his behavior? Have you two talked about your son's disability?

 

Let the love you feel for your son keep you on the right track. You are a good mom.

[anika99]

I'm sorry Sad Mom. I feel so bad for your little boy, he seems to want to connect to his father. I wish the best for both you and your son. Maybe now that you have taken this drastic step your husband will be open to therapy. He needs to talk to someone and sort his feelings out.

[writergal]

Sorry to hear that Sad mom. I hope that you and your son stay safe. Maybe this will force your husband to take the right steps finally towards acceptance of your son and what that means to the big picture of your lives together.

[Sad mom]

We are going home in an hour or so. I figured we would go play in the pool before we leave. My husband was still playing guitar when we left, but he called me about two hours later to see where we were and asked me to come home. I told him we needed time to think. Then, he kept texting me that the house was empty without his family and he was lonely. I told him that he should think about that the next time he ignores my son!

 

No, he shut me down when I brought up the disability...

[writergal]

We are going home in an hour or so. I figured we would go play in the pool before we leave. My husband was still playing guitar when we left, but he called me about two hours later to see where we were and asked me to come home. I told him we needed time to think. Then, he kept texting me that the house was empty without his family and he was lonely. I told him that he should think about that the next time he ignores my son!

 

No, he shut me down when I brought up the disability...

 

Sorry to hear that your husband shut you down when you brought up your son's disability. Do you have anyone else you and your son could temporarily live with until you get things sorted out with your husband?

[eye of the storm]

I think you two should go see a counselor that specializes in parents with special children. Call the doctor who treats your son. They will be able to direct you.

 

It is not an option. There is an elephant living in your house and it must be discussed.

[juicygirl]

I really feel for your husband, he is mourning the loss of the so-called "normal" child. Your husband may feel angy at himself for the resentment his feeling. This could be why he locks your son out. This is happened to a friend of mine right now. She has two children both on the autistic spectrum, her husband is not dealing with it to well. He doesn't go to appointments, he doesn't go and see the teachers at the special school and seems frustrated by his child too.( the first isn't his).

 

I think your husband needs to talk with someone. It's hard because not everyone knows how to deal with a child who has special needs.The resentment and guilt are consuming him.

[Sad mom]

My husband was extremely happy when we got home. Kissing our son, kissing me saying "oh I missed my family. I'm so glad they're here with me" he was gentle with our son and sweet.

 

I'm thinking about volunteering in my son's class. They sent out a flyer that they need help and I only work part time, but I'm not sure yet.

[eye of the storm]

SadMom, if you are interested in volunteering, do it.

 

I will tell you that sometimes being "overexposed" to situations make it easy to see them as more "normal".

 

Your "normal" is very different. But it is your normal. Don't be ashamed of it, don't hide from it. Accept it and keep moving.

 

When my son was younger and we were in the diagnosis stage (he was diagnosed later than most kids) one of the questions that was asked was about eye contact. I answered that he looks at me frequently. My (now Ex) H and Best friend said rarely. I couldn't believe the difference. But I had gotten so used to tapping my fingers on a surface and pointing to my eyes to get him to look that I didn't even notice I did it. It was my normal. My normal is not to touch him unless necessary and to ask permission first. Which got me some strange looks.

 

Your normal is and will always be different from everyone else. Don't be afraid or ashamed of it.

 

You only have so much energy to spend. Spend it wisely. Fighting against accepting your son, as he is, will waste your time and energy.

 

I hope you find a support group that you can be totally open with And I pray you and your husband are going to start pulling together for your son.

 

Im glad he missed you both. But if you still cannot discuss your son's health, it is just going to happen again.

 

I am sending prayers and energy your way.

[anika99]

My husband was extremely happy when we got home. Kissing our son, kissing me saying "oh I missed my family. I'm so glad they're here with me" he was gentle with our son and sweet.

 

I'm thinking about volunteering in my son's class. They sent out a flyer that they need help and I only work part time, but I'm not sure yet.

 

 

You still have a serious problem. Everything is not fixed just because you spent a few hours at a hotel. You and your husband still have issues surrounding your child's disabilities that need to be worked out. You keep on saying that you're still not talking about those issues with him. Why not? The above post sounds like you are happy to continue sweeping everything under the rug so long as your husband behaves as you think he should, but he won't be able to because he needs someone to talk to. You put a scare into him by leaving for a few hours so he will try harder to hide his real feelings and to control his behavior but his bottled up feelings will soon get the better of him again. You are not doing your family any favors by allowing this lack of communication.

[Cavallier]

I'm not sure how some posters are reading your posts SadMom, as being anything but completely loving and accepting of your son. Its clearly an emotive topic.

 

You cannot deal with your husband's attitude, whatever the reasons for it, on your own though. You, just like anyone dealing with an unusual situation, would clearly benefit from professional guidance. I suspect your husband won't see a therapist with you, but maybe if you go on your own it would still be helpful. I'm sure you would gain some insights into your husband's behaviour which may help you deal with it. It may also spark your husband's curiosity.

 

I also feel that volunteering at your son's school is an excellent idea for many, many reasons, not least expanding your support network.

 

Oh and hello, I'm new

[Sad mom]

Well, I can now say I've had the worst week of my life. My husband and I sat down and talked it over. He told me he doesn't even want to come home because our son bothers him. He hates how confused our son gets and the way he talks like he's younger than he is. I told him I understood because I do. I get like that too sometimes and I have to deal with the doctors and the school and I get tired of it... He did say he will go to therapy because we love each other.

 

We decided that we are going to have our son stay with my parents for the week so we can have a break and see what would benefit our marriage.

 

Then two days ago, I took a positive test. Guilty does not describe how I feel right now.

[Tayla]

What is a "positive" test? Sorry I am new to some of the lingo...

[Sad mom]

What is a "positive" test? Sorry I am new to some of the lingo...

 

I'm pregnant again. I haven't told my husband yet because I feel horrible.

[eye of the storm]

Sadmom, I have started to post to you several times. But I just don't know what to say.

 

Please stop feeling guilty is probably the first thing I should say.

 

But you now need to decide where to go from here.

 

Some things to consider.

 

1. If your son's condition is genetic, the child you are pregnant with might have the exact same issues. You might want to talk to a genetic counselor sooner rather than later in case you have to make some decisions.

 

2.

He told me he doesn't even want to come home because our son bothers him. He hates how confused our son gets and the way he talks like he's younger than he is.

Well, unfortunately, your son is different. He will always be different. Your husband has to make a decision. Get on board and love your son AS HE IS, or leave because I am telling you from personal knowledge, that eventually your son will realize his father is disgusted by him and it will cause your son immense pain. And if you, as his mother allow that, then you are just as responsible for that pain.

 

3. It is good for you to have a break, I'm glad his grandparents are able to step up. But I really think this week long break should be about deciding where to go with your marriage in regards to parenting a special needs child.

 

4. Eat, rest, light exercise, and stop blaming yourself.

 

Still sending you hope, and energy.

[pink_sugar]

I thought you guys were putting things on hold as far as trying? I will be honest with you...with what you are going through with the first child, now is NOT a time to be having another baby. There are way too many issues here and the possibility you could be going through this with another child.

[Sad mom]

Well, that didn't last long. We took him to school Friday morning and told his teachers that he would be staying with my parents all week. They understood and said they'd communicate with my mother and myself for the week and said that I've been looking like I needed a break. It made me sad to think they could see my frustration. The first two nights were great we talked, we made love, we cried and I told my husband about the baby, but by Sunday I was ready to see my little boy. The house just felt empty and quiet without him. I let it go because my husband was enjoying it. Today I got a call from his teacher to please consider coming and getting him at the end of the day because he was so sad. He just would put his head down and cry, and ask his teacher what he did. He thought he was in trouble when I went to pick him up he had his back to the door and I could hear his cries. They were so sad my heart hurt. When he saw me he just said mama over and over and cried into my shoulder while I held him. I hate that he felt like he did something wrong! I told him how much I love him and there's nothing he did wrong or that he needs to feel sad about. He's asleep now, but it feels so much better to have him home

 

My husband and I are going to do genetic counseling. If it looks like something is wrong, we will terminate. Just thinking that makes me want to cry all over again. I just want my new little baby to be healthy and normal and my husband happy with his babies... And of course my sweet boy to be happy

[newmoon]

i was going to add, but it looks like you have just thought about it... what if genetically you guys are having children with disabilities? that is a consideration if you're pregnant again. and typically the second child child has more "issues" than the first as the strongest genes go to the firstborn. we have a disabled child in the home too, and as the child ages i have seen the changes in everyone. his father is getting more distant from his child because he realizes the child will never be normal, and that as he gets older (the child) he still is functioning at a low level and not maturing or engaging in activities for his age. but he still loves him and treats him normally (but with attention to the disability). you can't deny what is going on though, because that likely means you're ignoring the real needs of your son. he probably needs far more care and support than two parents in denial are giving him. counseling with someone who deals with these family issues is a must, and perhaps meeting with others who have children with similar issues. you'll have a major problem if this is left unaddressed and your next child is disabled too.

[preraph]

Well, I wouldn't advise you to have another child. It's going to just double the stress that's already there. It's not easy to live with a disabled child as sweet as he is, and your husband doesn't have the maturity or temperament to handle it, so don't have any more kids with him! If it gets to the point that he isn't helping out and is actually becoming abusive to your child, you will have to leave him. You'd be better off on your own and getting child support from him than living with the tension in the household and whatever effect it has on your child.

 

That said, your husband should be able to have plenty of time he isn't having to focus on the little boy and can do his thing. No child should be allowed to intrude on every facet of a parent's life 24/7. There should be times he must entertain himself in his room and give you both a break. Of course, it would be nice if you could have some time to yourself too. But without the husband being willing, it's just not going to happen.

 

You need to think about what having another child will be like for the new child. He/she will never get the full measure of attention that your autistic son does. It really isn't fair to bring another child into that situation. And there's already too much stress in the house. And think about if your husband showed a lot of favoritism to the new child the jealousy and hurt that would be on your boy.

 

Your husband may simply not be up for this for the long term. You need to have a calm talk with him about it. He might be wanting out.

[Acacia98]

Today I got a call from his teacher to please consider coming and getting him at the end of the day because he was so sad. He just would put his head down and cry, and ask his teacher what he did. He thought he was in trouble when I went to pick him up he had his back to the door and I could hear his cries. They were so sad my heart hurt. When he saw me he just said mama over and over and cried into my shoulder while I held him. I hate that he felt like he did something wrong! I told him how much I love him and there's nothing he did wrong or that he needs to feel sad about. He's asleep now, but it feels so much better to have him home

 

My husband and I are going to do genetic counseling. If it looks like something is wrong, we will terminate. Just thinking that makes me want to cry all over again. I just want my new little baby to be healthy and normal and my husband happy with his babies... And of course my sweet boy to be happy

 

I'm so sad and so sorry for everything you are going through, Sad mom. It's a lot to deal with. Anyone in your position would feel overwhelmed. I can understand your husband is struggling too and my heart goes out to him as well, but the particular way he is dealing with this struggle is on the slippery slope to the abuse of your son. So, while I sympathize with him, I don't think it would be doing anybody any favors to indulge him and say "It's okay, he'll figure it out in time."

 

He definitely needs to get counseling and to find a way to work through the frustration, anger etc. This is urgent, it's not something that can wait, because his actions are already hurting your son. They're hurting you too: he's essentially left you to figure out a lot on your own. You need him to be your partner through this experience. You're basically functioning as a single parent who is also trying to nurture her husband.

 

I get the sense that you are a good mother and wife who wants to meet the needs of both your child and your husband. And I have the feeling you're being pulled in two directions as a consequence. You understandably want to support your husband as he is also struggling through this experience, but as you undoubtedly recognize, if you try too hard to accommodate him, you risk neglecting the emotional needs of your innocent child. I think that may be one of the reasons why you left the house with your son when you got upset with your husband.

 

My suggestions to you: find out as much as you can about the resources available to you and your family, and make use of the ones that will help you. Just as importantly, focus on your own needs too. If the unthinkable happens and you have to decide whether to terminate your pregnancy, make the decision that your conscience allows. Don't allow anybody, including your husband, to push you to decide one way or the other. You have already been through so much, it would make things even more challenging if you ended up making a choice against your will.

 

Also, consider the possibility that it may take your husband a very long time to come around (if he does come around). If he continues to feel so resentful in the long-term, what are your options? How can you create a safe, nurturing environment for you and your child?

[Sad mom]

It's so difficult because I love my husband so much. He is my best friend and the love of my life and when our son is not involved we are fine. However, my son is my world! I adore the ground he walks on and I told my husband that I will not let him hurt my son anymore because it hurts my heart to see him hurting like he does when my husband pushes him away. It's not his fault he is disabled! He did not chose to have intellectual setbacks! That's what gets me most, my husband seems almost disgusted by him sometimes and it wasn't always like this... I feel like I didn't do enough for either of them somehow.

[CarrieT]

I find it interesting that you refer to your son as "my son" and not "our son." I imagine it is helping cause separation within the family for all of you.

 

OP, have you looked into what rights your child will have as he grows older? You won't always be there for him...