How much has having an SN child affected your marriage?

[Doigthebountyeater]

Hi,
Just feeling sorry for myself today. Ds1 (4) was diagnosed with epilepsy in jan. In the great scheme of things, it is not too bad. It is nocturnal mainly but he had one full TC on Christmas Eve last year. Since then, we have tried epilim (too many nasty side effects) but did get him seizure free for 4 months which is excellent - now we are moving him onto keppra.

However, DH and I have not slept in the same bed since Jan due to the fact that we need to monitor DS on the medication to see if it is working. His seizures are too brief for an alarm to work and he has no other signs in the morning. Add into the mix that we have a baby who does not sleep and that I accidentally got pg and had an abortion solely because we really felt we could not cope with me being pg ( I am sick for 9 months every time and have spd).

We have always had a very good marriage. However this year has been exceptionally hard and has really taken its toll on our relationship. We bicker and fight a lot more and several times recently I have screamed at him that I hate him. I don't. I just hate the fact that we're exhausted, stressed and worried all the time about DS. We don't even know yet if the keppra will work, in which case we will have to slowly increase the epilim again and the slowly build up a third drug. We are doing the right thing by our son but it has definitely cost us a lot.

Anyone else feel the same?

I think we're lucky that we're pretty close and very much in it together, but even DH and I have our ultra snippy moments. Quite often, we're so mentally exhausted that our own personal, somewhat aspie need for non-stimulating quiet time over-rides our need for companionship and before we know it, we realise we've not had a conversation about anything other than dealing with the kids for a week. Add in the weeks when the kids have him awake at silly o'clock (I'm a night owl and definitely no lark and sleep through it all - thankfully, he IS a lark and is patient with ME on that one) and we spend very little "quality" time together because he's falling asleep as soon as the kids have gone down. I could joke that that's our secret, but it sometimes gets very lonely for me and I do occasionally end up screaming at him about it because he gets to leave the house for 10 hours a day.

Don't think it has. But then we don't have children with life shortening or threatening disabilities, ours just have autism and ds1 also has erbs palsy. So perhaps the particular disabilities and the implications are a factor in how it affects a marriage?

I think it has for us. DH has degenerative physical disabiity, finds it so hard with ds who is fit as a flea and always moving but has mod LD and only 5 words of speech. DH can't sign much due to probs with hands and DS only signs. Although DH has had to medically retire which means he is around good for us, but he is so tired and in pain and grumpy cos of it...

I feel protective of DS when DH is grumpy and rough cos he is in pain. Feel trapped between both their needs.

DS has brill LD Pysch who has agreed referral to his team (LD nurse) for DH to talk about how he feels about DS and how to parent him bearing in mind both needs. Am hoping this will help him and us....

It puts us under quite a lot of pressure as we are together an awful lot.
We now do one voluntary job each, they don't have regular hours but we pick and choose. About four hours a week outside the home each when we can and it keeps us sane, we get a bit of time apart.
Previous to this we were heading for trouble.

We are heading towards a break-up, I can feel it but we just dont talk about it.

DH thinks I am a miserable cow who doesnt have anything to talk about but DS2's problems. I think he is a disinterested twunt who doesnt want to see DS's problems, and thats on a good day :)

I deal with everything and its getting more and more difficult to shoulder the burden by myself.