Autism Affecting my Marriage...Overwhelmed! Help!!! (you'll be overwhelmed too after reading my very long article, lol)
Not sure where to start with this one. A quick summary...my husband and I have 1 son, DJ, who is 3yr 4mo old.
DJ is On the autism spectrum, and he at this point is considered non-verbal. He does make a LOT of noise, and sounds, and humms constantly, but he doesn't have words except for mama & go, which are both very sporatic. He is very very intelligent...he amazes everybody who sees him use his iPad, and is a whiz at the computer. Its really something to watch.
The main issue though for us having a hard time with as parents, is that DJ has major sleep issues. He has had this problem since October of last year, 2010, and there is honestly no advice that is helpful to us, as we've tried everything we can so far. We have an appointment 3 months from now at Childrens Hospital-Boston (where DJ goes for all his appointments) with their sleep specialty department. Unfortunately since Childrens is a place people travel from all over the World to seek for their top-notch medical care, all appointments are booked very far out. Anyway...his schedule is pretty much he will go to sleep anywhere from 10pm-1am. And regardless of what time he goes to sleep initially.....he wakes up between 3am-6am every single solitary day. He is not rebellious of his bed...he actually & ironically LOVES his bed, lol...but the issue is that he is honest-to-God, wide-awake & fully-rested. Mostly he gets up at 3am. So then of course I am the one every single night that gets & stays up with him, since I stay home full time and my husband works. I would never even consider asking him to ever help with that shift, seeing how he has to get up very early for work...and theres just no way he could do the manual labor he does on no sleep. We have bills to pay, a paycheck is crucial, so end of story with that part.
(I'm getting there, I promise lol)...Our marriage has suffered quite severely on an intimate, emotional level since DJ's diagnosis of Autism in July of 2010. Since my son goes to sleep so late, (yes I have tried to change this for 14 straight months and no, nothing works), there has never been a night in 14 months...honestly...that my husband & I have gone to bed together. When my husband comes home from work, he is physically exhausted, and I am not making excuses for him, I know he works very hard at his job, and he is very tired. He drives a long way as well. So he comes home and usually rests and a lot of times fall asleep for a couple hours, downstairs in our finished basement, while I am with DJ, running around after him and cleaning/cooking, etc for the rest of the night. Also due to DJ's late bedtime, there isn't any "available time" for us to be intimate at all...and I often question how in the World other couples manage to make that happen?? Being 3, I can't just put my son in a room or in front of the television while me & my husband go sneak off for a period of time, not knowing what he is doing....especially since DJ stills put almost everything he comes across in his mouth. Its just not feasible or responsible. We ddo not have date nights or anything like that, since we have no babysitter, and our family that does live close, never offers to help. Even when they do...they have called us saying "he's crying i don't know what to do" or they do something crazy like heat up his food so hot that the bowl melts. So needless to say, along with them not ever offering, our past experiences weren't good or enjoyable, so we just don't really trust leaving him with them. I know...its pretty sad that we can't feel confident leaving our son with his own grandmother!!! I know, trust me! Even when they did watch him in the far past, it was so few times and so long ago....that DJ isn't comfortable enough with anybody besides us, to be able to be left alone with them without having a meltdown or freaking out. And that alone is scary for us, as the sitter would not know what to do in that situation and could potentially make it much worse. We cannot trust just a hired-out-of-the-paper, young sitter either. As anyone reading this knows.....Autism alone poses its challenges for someone who doesn't know anything about it, but when you have a 3+ year old who does not have a way to communicate....thats nearly impossible for someone who is used to 3 year olds that speak. So its frustrating for us as parents...knowing we literally have nobody to help us, seriously nobody....ever. If you have a child who does communicate, then its truly impossible for anyone to know the magnitude of having a toddler who can throw tantrums and preferences, wants, needs, feelings, illness, and there is absolutely NO way to communicate with them whatsoever. It is such a huge stress. That stress alone makes my husband very depressed, and he was already depressed before we had our son! He feels bad and sad that DJ can't tell us how he feels or whats wrong when he throws a crying fit and flales his arms & legs in anger....its hard to watch but harder to know there is not much we can do. Its a feeling in the pit of your stomach that you are failing as a parent by not being able to help your child with what they want.
So okay...due to the sleep, work schedules, etc.....we have no time available for intimacy, we can't even sit & watch a movie or show together with all the needs DJ has on a constant basis, and our opposite sleep/wake times, we have NO help, no person who is capable nor offering to help us out and babysit/watch our son for us for a dinner date, nevermind ever doing a night out! Now my husband's emotions play a LARGE role in this all, so I will discuss this now. He is majorly depressed, and medication has never been effective for him which is a daily struggle; he works hard is always tired, exhausted, sore; he is 43 years old, and claims his age along with his job, makes him feel physically less able to be as active as he would like with DJ which causes frustration & self-loathing (although he does of course play with him...just not as much as he'd like); as a man of course he wants to "fix" everything and he is helpless in that mission, as autism & its unique, individual problems, is not something anyone can technically 'fix', so that adds more depression and negative thinking; he spends a LOT of time feeling sad & sorry for himself and sorry for DJ because he feels that DJ automatically won't have a normal, happy, successful future (I know thats not entirely true, which I do tell him, i read things to him, it doesn't matter); he reads way too many things online about autism, and its always the negative aspects and the worst-case scenarios- even to the point wher he doesn't take notice or even recognize little pieces of progress that have been made (this is unintentional)--that strong focus on the 'worst' or bad...makes him insanely manic & depressed, thinking DJ has no hope for the future, again; he has spent countless days crying and crying & crying over all of this....he views it all as us being doomed and that nothing will ever get better; he believes DJ will never talk, which we don't know yet, there is still a possibility, but he has his mind set that DJ will not improve with this.
THE biggest issue....when DJ gets up at 3am every night, he is very loud, by loud I mean just yelling out sounds, and he humms and does like the sound "Eeeeeee" over & over, so repeatetively that my husband wakes up & then can't fall back asleep, which has a snowball effect....thus when he comes home from work is stressed, tired, depressed, angry, etc. Its just a mess, it really is. DJ's humming REALLY is THE most agitating sound in the World. I even get very stressed to the point where I just start crying sometimes because it is so constant, and so loud, and he will do it for an hour straight, no lie, without stopping at all. You'd probably have to hear it or experience it to really understand how it can get to you. DJ believes when he gets up at 3am, that its day-time, he doesn't have a concept of day vs. night, or at least we don't think he does, so when he gets up at 3am, he is wide-awake, and I mean WIDE awake. He runs all over the house, makes lots of noise, has tantrums, has crying fits, all kinds of behaviors that I am sure all the readers of this have plenty of experience with!!! I amaze myself sometimes at what I'd call an abnormally high level of patience & tolerance for alk of it, but then again I don't really have a choice. I can't throw my arms up and say I am going to bed, and I can't walk out the door and leave....so I try hard and am pretty damn successful at maintaining a calm, positive attitude, even when I haven't had a night of 8 hour sleep in over 1 year.
So with all this noise & disturbance during the middle of the night while my husband is trying to sleep, naturally its annoying, frustrating and it wakes my husband up several times over, causing him to look at our son's "autism" or "problems" as being that much more "bad". And I feel stuck in the middle. I say sometimes the only reason we have luckily stayed married, is due to us having 2 fllors, as well as a finished basement, lol. So we have 3 floors of living space, and I try my best to keep DJ on the 2 lower levels of the house, in an effort to not wake up my husband. But I cannot forcibly keep him from going upstairs for 6 hours,....he is THREE YEARS OLD! ha ha. Its just not possible.
HERES WHERE YOU CAN HELP ME MAYBE??? LOL....sorry for the length! I searched for an online support group at 7:00am this morning, and I've been writing this article ever since. As you may not know...it is now 9:24am, and I am not done because I had to try to put DJ to sleep several times unsucessfully, and he had a major meltdown so I had to end up taking him out of the house and taking a car ride to dunkin donuts for a coffee, hoping he would fall asleep, which he did not. The driving force that made me do this today,....is that my husband over-slept by a full hour, so naturally he was not very happy when he slept through the alarm, as the whole reason it happened was that DJ kept waking him up throughout the night with the humming, crying, etc. When he was walking out the door to go to work, he turned and looked at me and said "I really don't know how much longer I can do this...its 7 o'clock and I am just leaving for work, and I am suppose to be AT work at 7 o'clock. I can't keep doing this..we need to do something because this is just crazy." Do I understand his frustration? YES, of course. But I feel like he directs every issue with our son at ME...and I have no answers. I am not a Doctor, Therapist, Expert, and I have no answers. For God's sake, even the Doctors, Therapists, his School and Experts have no answers!!!!! I broke down bawling after he left, although I was relieved I didn't have to walk on egg-shells anymore since he was up & out of the house. So I need your help. I am not looking for sleep advice at all. Anything I have read about sleep advice are all suggestions, tips & solutions,....that would ONLY be able to work with a child who TALKS. There seems SUCH little resources for those parents who have non-speaking, non-verbal children on this matter. DJ does take Melatonin, and has for almost 10 months now, even the dose being doubled. And it does NOT help one single bit. So I just make it through the day & night, (barely) while waiting for this specialists appointment at Childrens. What I DO need your HELP(!) with....is what to do with my husband.
I honestly feel SO lost. I feel that I am barely holding onto my sanity as it is, with the fact that every day of my life is 100& UNpredictable, DJ's behavior is unpredictable, I dont know when I will be sleeping that night, I have NO help, NO sitters, My husband can't help much, and I have absolutely NO social life or adult life, and I go NO where by myself....ever. On top of all this, I have a few health issues that are crucial for me to take care of....and its a huge struggle for me to try and find the space in my mind to focus on that, as my focus shifts every 5 minutes with my son deoending on what he is doing. So I feel also like I need understanding & support, but my husband is SO wrapped up with his own depression, his own frustrations and the looming cloud over his head of uncertainty over our son's future quality of life, and future diagnoses/medical/developmental progress or stagnance....he is so overwhlemed himself, that he directs these issues toward ME....and I can't really be of much help. I know that we don't have a good, solid foundation like we once did....not being intimate-EVER, not having time for one another or being able to spend time together, etc. And this all adds tremedously to the stress of the neverending stressors related to DJ & his Autism/Speech Delay. I love my husband, I know he loves me and I know we want to be a family. But I fear he is literally getting the point where he just wants to run away and not come back. I don't mean I think he will actually do this...but I know genuinely, that he thinks about it in his mind, and often, because he is reminded daily of how difficult our life has become. I don't want my husband to be miserable....I wish he wasn't so depressed, but theres nothing I can about it. In his mind, he truly feels like there is no hope and that our life will never change, it will never get better, and I feel he thinks he just cannot take the amount of stress that it causes him both emotionally & physically. I don't know what to do & I've never felt so helpless in my life & about my life, as I do right now. And lets just say for objective purposes....that DJ's sleep magically changed and he slept "normally" every night....we would still have the non-verbal/non-communicative issue that causes major stress continuously, as well as our issue of not having any intimacy & time together. So the sleep is just a piece of it, but its not all that contributes to this. Its everything put together in a big minefield. Everyone keeps saying to me "It will get better, it will get better in time" or "It will get easier when DJ is a little older.", but I am not so sure that applies to my life and I can't seem to see all of our many, seriously life-altering issues, all getting better for us, and I surely don't see it happening soon enough to make a difference in our marriage.
My husband and I don't have any problems as far as resentment, or anger, nothing that the majority of couples have prevalent in their marriage, who end up getting divorced. Thats why I feel so helpless. Neither of us would ever in a million years want to separate or get divorced, however at the same time.....I feel the amount of stress is SO great and SO destructive to our mental health, emotional health, physical health & relationship health, that I wonder if my husband moving out and staying at a studio apartment or hotel during the week would be something that would actually be BENEFICIAL to our relationship!????Because eventually.... the stress WILL become a direct issue of our marriage and I don't want that to happen, I really don't, and I am 100% positive he doesn't want that either. We are basically.....in a nutshell....at a stale-mate. We don't know what to do. I don't know what the right thing to do would be, or how to change things to make anything better. Without able-bodies to help us......that eliminates pretty much ALL options that most people would give as advice/suggestions. Its basically just us 3.....and its not working out in a way that is a healthy, happy home environment any longer. And my #1 goal in my whole life.....is to make sure my son has a VERY happy, healthy, calm, nurturing home environment, which is why I feel so deperate as to think of the idea of my husband moving out part-time. I sacrificed everything about my life to get pregnant, and I quit my successful, fulfilling, good-paying career, to be home full time with my son DJ, and no matter how difficult things have become....I have never had a moment of regretting that decision, and I never will. I will sacrifice a "normal" marriage & living arrangement as well, if thats what we need to do to keep this home the way it has been and is, all for the sake of DJ. I know we must also "take care" of our marriage but right now.....like RIGHT NOW...THIS MOMENT....we do NOT have the means, the support, the tools, the opportunities,...to make that happen & make that a priority.
I beg of the readers....if you have read up to this point, then please take a moment and just give me your thoughts. If your marriage suffered, either ending in divorce or getting through it....I want your story! I need out-of-the-norm options right now because its all that can be done in our lonely situation!!! I want my husband in a HEALTHY state of mind....I am too scared and afraid that his depression will end up killing him....if something major doesn't change. I know as a mom, a stay-at-home-mom, a mom with no help, a mom with no sitters, a mom with an autistic child, a mom with a non-communicative child is very difficult & stressful and that I also need to concentrate on myself & my mental well being. And I do need to focus more on my health and emotional wellness....trust me I do need to because I am very overwhelmed & tired,.....but the priority at this exact second of our life........ FOR THE HEALTH OF "OUR FAMILY" AS A UNIT, AS A TEAM, AS A WHOLE... something has to change, and change soon. I am afraid that I just don't know what that change is or means. Please comment/reply/message me. I SO greatly appreciate it if 1 person has read this. This means the World to me....even if you don't feel comfortable giving me advice....I appreciate any support of any kind, or words of wisdom!!! THANK YOU!