How to cope when you have small children with disabilities

Tinanicu

I am 41 with two children, ages 4 and 6 who have autism. One is high functioning and the other fairly severe. Both are very dependent on me and now I will be undergoing a bilateral mastectomy next month. My husband is very good at doing what needs to be done, but it will be a lot for him to handle when I'm down and out for a while.

How have you dealt with being the "dependent" one when you are normally the one that cares for others? Has having small children been difficult during your treatment?

ablydec

I wish I saw this post when you wrote it!  I hope you are still on line.  I am 48, and my youngest is 9 with multiple disabilities, very dependent on me.  Much of my struggle during chemo was my own frustration that I could not "do what I need to do" to take care of my daughter.  I'm past the worst of it now.  (Finished chemo in May).  How are you doing?

Tinanicu

Hi! I am doing well post mastectomy speaking. I've since had another unrelated surgery and am, as we speak, in the er for a broken toe. This has not been a good year! Nevertheless, had a lot of help from family and that made it so much easier while healing. Glad to know someone else can relate!

coraleliz

My son has Asperger's & I've never found a place to share this. I diagnosed when he was 13. As predicted he didn't show much concern or sympathy. My husband & I were discussing the chemo issue. My MO told me I needed to weigh the pros & cons/risks vs side effects(low risk tumors)...... We looked up & there was our son(he had been listening in). He blurted out, "you shouldn't do the chemo". We were leaning that way. I took it to mean he cared.

Tinanicu

Yes, they do care I think. They just express it differently. Big hugs to you and him!

batgirl2oracle

I also have a son that is 7 with autism and a son that is 4 with severe ADHD together they are a force to be reckoned with. Its been really difficult. I have a 14 year old daughter and I've had to depend on her to help as much as possible. But my autistic son really became clingy just wanted to lay and watch tv with me and stuff before we even knew the final diagnosis. Its crazy how they know. My 4 year old is my body guard lol. He called my drains my boo boos. Drains are gone but he will run in if I'm changing clothes and sees my scars and just gives me an odd look I guess taking it all in. If people come to hug me or something he will yell stop dont hurt my mommy shes got broken boobies. lol. Its a blessing and a curse having them. Theres struggles for sure but they also do things that neurotypical kids just dont usually do. Especially the little ones. I know I'm late posting on this. I hope you're doing well. You can pm me if you need to I'm an autism semi-expert lol.

shoppygirl

My son is 14 and has Aspergers and ADHD. Unfortunately both my husband and I were diagnosed with cancer within 2 months of each other. I am finished my treatment and am doing well and my husband is still going through his. Our son had a similar response like your son coraleliz when we told him about our diagnosis. I am sure he does care but his biggest concern has always been, how will this effect him. Will I still be able to drive him to school? Will all his needs be met? I think that is just how they are with this condition. Having a child with Aspergers and ADHD is hard enough without having parents with cancer in top of it. We managed to keep everything as normal as possible during the treatments and my son seems to be ok with everything now. I think it just takes time.

Tinanicu

thanks for your input ladies! It really helps to have others step up for us when we are the ones with the health issues.

bobogirl

Wow. Great thread. Scheduled for BMX in December. I have two children with special needs -- one is special-needs adopted (he's just incredibly high-maintenance) and my daughter has multiple health issues -- severe allergies, vision problems, and epilepsy. This will be my third breast surgery. No chemo, but I'm already starting to try to figure out how I can keep things running. No vacuuming for me? I can't imagine it. And the baby has got special food issues, so ordering takeout is not really possible.

My partner does all she can, but I'm the woman with the plan. I'm scared I'm not going to be able to really heal because I'll be trying to do everything. And I don't want the children to see me in pain. I work so hard for them when I'm around them. One day -- after a night of 24-hour virus for me, I was throwing up -- I went into my room to lay down before my daughter's concert. She snuck in and took a picture of me! She'd never seen my lying down in the daytime!

Tinanicu

I wish I had my bmx during the school year so that it would give me more time during the day to rest while the kids were at school. I asked for lots of help. My hubby took off for 6 weeks, my parents, sister, brother and family helped with the kids, chores, etc. my coworkers cooked meals for me for a few weeks. All were immensely helpful. My te exchange will be in the beginning of December when the kids are in school. Hopefully that will help. Good luck!