I have been married to my DH for 7 years and with him for a total of 10 years. We have four children. One of them is special needs. Our lives are very stressful! Our SN child has severe sensory processing disorder. We cannot take him to crowded or loud places for very long periods of time, the visit becomes unpleasant for us and for those around us. We do no go out to dinner with our kids, we either go alone or take the other three and leave the SN child behind with a sitter. He cannot naturally block out the background noise like we can. To him its like piercing needles constantly touching his skin or someone screaming in his ears very loudly. He either cries loudly or screams if we are in public when its noisy or crowded. As soon as we leave the situation he is fine. Here is my dilemma. Lately things have become very stressful for our marriage. My SN son is 6 years old but is mentally at the level of a 1.5 year old. He requires A LOT of our time and attention. It takes away husband and wife time and it takes away from our time with our other kids. We deal with him from the time we get up till the time he goes to bed which by that time, we are tired and exhausted. We have no help. My parents live 300 miles away one way and they do come down and occasionally help out, but that is maybe once every few months. His family lives 40 miles away but shows no interest in knowing more about their nephew/grandson and cousin. We gave up on them a long time ago. I feel as if we are prisoners in our own house sometimes. My DH has become very withdrawn. He does not hang out with his friends anymore, he doesn't try and contact his family and I feel as if he has become solely reliable on me. He doesn't want to do anything without me and frankly it has been wearing on me. We fight. We argue. Sometimes we emotionally separate from each other for a few weeks until the stress settles down. That is how it is in our family. And as much as we love our SN son, our lives are hard because taking care of him requires so much time and effort. He is non verbal, autistic, not potty trained and is very needy as well. Every few months we seem to go thru these trials where we need to work that much harder to make our marriage work. I know that I love my DH and I love our family.... but for the past year every time we have our little "bumps" in the road he has been threatening divorce. or he says he doesn't want to be here, he feels alone. Well so do I. Last night we had another heavy discussion because unfortunately we have been having some issues for the past two weeks and again he said that he doesn't want to be married, he wants to be alone, he doesn't want to be at the house anymore. so I told him to leave. he said every time we go thru a period where we don't get along I draw a little bit farther from you. and I finally said to him "well I am sick of you threatening divorce every time we have these bumps, put up or shut up because I am sick of it". He just starred at me and didn't know what to say. We have been thru counseling twice before which I had to trick him into going or else he wouldn't have gone otherwise and both times it didn't work. the first time I started counseling for myself and said that I wanted to go to help me cope with having a special needs child and then I made up this story of how the counselor wanted to talk to both of us so we could learn to parent together and help us help our children. well when she started going over his family issues..he walked out and said he was not going back! I have never said I wanted a divorce, I love him so much and I love our family, but I am afraid all of this stress is getting to him and I don't think he wants a divorce because he doesn't love me, I just don't think he knows how to help himself be a better husband and a better parent so the easy way out is for him to just leave. well as I explained to him last night, he can walk away from our family but he still has to be a dad to these kids and even though we wont be living under the same house, he will have weekends with the kids alone which I fear is going to be way to much for him to handle on his own since it seems like he cannot handle it with me here. I don't know what to do. I have suggested getting on medication (because I have) to help him cope with our family life and he refuses. He alienates himself..... help!! Suggestions!! Keep in mind our son is 6 and we have been dealing with this way of life for 6 years, its hard and it sucks! I love my kids to death but this life that was handed to me sucks big time!
so after I stepped away from the computer I demanded that my DH and I talk about our issues as they will not go away and I personally don't think divorce is the answer. yes my son goes to school, he is in the SPED program. yes he is on a Medicaid waiver so we do get respite care, however, we only qualify for 10 hours a month, which is nothing! he is in therapies when he is enrolled at school and we do take full advantage of everything that is offered to us. Putting him in an institution is not even a thought in our minds. I realize that some families do turn to this method and that is fine, if it works for them but not for us. honestly I don't think I could live with myself if I did that. just my personal feelings. thank you all for your kind words and suggestions. I know it probably wasn't the right thing to trick him into therapy but I WAS DESPERATE!! this was just last year and this was already five years going into this. please please understand that living with a SN child is nothing like a typical child. my son will never live life alone. he will always have to have someone look after him. good thing is he can walk independently, so he is not like bed ridden. he can eat by himself with aid, no feeding tube, so that is great! after a two hour discussion with my DH he has agreed to try some modern medication (THANK GOD) to help him cope. I did suggest therapy again for us and he said that he would be willing to consider it if the medication didn't help, so I was glad and relieved to hear that! again, thank you for reading my story and willing to help offer some help! I am hoping for a better tomorrow and a future full of good and positive happiness. it will not be easy by any means but we are willing to work together. thank you and god bless!
More and more judges are doing 50/50 custody where each parent has the child for a week at a time, so his leaving will not get him out of his responsibility as a father to these children. I think therapy may be in order for you all, both individually and as a couple and family.
Can you afford a full time caregiver? That would likely help a lot. Sad to say, but this is why they use to have institutions for kids that needed this much care. I suspect they saved many marriages and families.
Since you are in the Kansas City area. I wanted to tell you that there is a church in the overland park area called Grace Church at 15 1st and Antioch that holds parents nights out just for parents of special needs kids. The program is run by two pediatricians who had a special needs child of their own. They take all your kids for a Friday evening. I believe it is every other month. You give them your needs and they will assist you. It is a great program and worth looking into. It is called Soar special needs night out. They also have Sunday school classes every Sunday just for these special children and adults. This could give you each a little breather.
ADD: Re. residential programs. You have to do what is best for you and your family, including your son. In my extended family, one of the children was in a very similar situation as your son - no communication, functioning far below his age, etc. His family could not care for him and their other two children. He is in a residential care facility in their neighborhood so they are able to visit with him and do family things when he is able. He was emaciated because they couldn't get him to eat successfully, it was so bad. This home that he is in has provided an environment where he is able to find what he needs to function. He is eating, he is healthier, he is TALKING.
I know that every person with autism is different. My son is on the spectrum, but he is what would be considered "high functioning". But please, don't judge yourself if you as a mother do not have the extremely specialized capabilities to provide an environment that is not specialized to your son's particular sensory needs. It is SO difficult to figure out what their brains are doing from the PROFESSIONAL side. IF a residential home is set up in such a way that it provides HIM with peace, then you are doing the best possible thing. Our neuro-typical homes, our neuro-typical world, can be too much for kiddos with severe sensory issues to process. Don't beat yourself up if you need a level of help beyond what you can personally do.
Original: Wild Woman has some great answers. Also check with the school district. They should evaluate him and potentially provide services, depending on how it works in your area.
I googled and found this - http://dmh.mo.gov/docs/dd/navigationguide.pdf - autism resources for Missouri - I don't know if you have it already, but perhaps there is something in there to help.
Is your son in any sort of Occupational Therapy and Sensory Integration Therapy? When you take him in public, what sort of accommodations are you making for your son? does he get soft ear plugs or noise-reduction headphones? Have you tried a weighted vest for him? Do you have a weighted blanket for bed? A weighted lap pad for the car and the couch and when he needs to sit in other places?
Do you give your son body brushing?
Do you give your son joint compressions?
Do you "feed" his daily sensory diet with things like playing in a container of dried beans or dry uncooked rice and playing "find the toy" inside that stuff?
Do you let him play with water? Or sand? Sand tables that have one side where you can put sand and the other side water are fabulous. You can even fill them with things like dried beans or rice (great because all of these things are nontoxic and it won't matter if he eats them).
Do you give him warning about what will be happening before it happens, before you leave for an outing? Do you script his day out for him? Do you give him possible ways of responding and a lovey to take? Something safe that can also act as a sensory-input item like chewlery... ie. a specially made necklace or bracelet made for children with SPD to chew or suck or twirl safely without choking and no toxins.
Do you have a preparedness kit to take with you of things he enjoys that can distract him? Fill it with small objects that have several different textures he can touch and feel and focus on when you see the signs of him possibly having a meltdown... give it to him before the actual meltdown... it can help soothe him and focus. If he stims/perseverates then let him. It could be humming, flapping, hopping, repeating sounds or movements. If he enjoys coloring then bring a coloring kit. If he enjoys technology, bring your iPad/smartphone/android and load some free apps for children that have ASD and let him play.
Have a plan to remove him from a situation that overwhelm him. When you arrive somewhere, find a quiet place you can take him where he can detox with his preparedness kit. If there isn't a place like that then designate your car as a back-up.
I know this is hard. I know it's h*** o* a marriage. The key with your marriage is communicating and carving out time for each other that doesn't involve any of your children. You need respite care. Ask the school if they can recommend someone. Ask your pediatrician if they can recommend someone. Call a Personal Home Care Agency and see about hiring a PCA ie. a Personal Care Assistant to help out. It might be covered under insurance or you might qualify for a waiver or child care credit.
You CAN do this. I won't pretend it's easy. I AM concerned about leaving your son behind because you think he's making things difficult for everyone else... but this life isn't easy for him. Our goal as parents to autistic children is to try to make the world easier for them. If we can help them learn to cope, it can become easier for us too. Not easy... but easier.
I don't judge you at all believe me. We don't ask for this. We even ask "Why me?" I prayed long and hard, and I demanded of God, "Why did you do this to me? Why did you do this to my child?" and the response I got was, "Why not? I gave you G because she needed you. I didn't do anything TO her. I gave her to you because you're the mother she needed."
You are getting help for your son but not for yourselves. Your marriage is on the line here. Think hard about what it would be like handling your children -- all of them including the SN child -- as a divorced mom, shutting them back and forth to dad, coordinating care, having only YOU there at night when the kids are with you....You already fear your husband could not handle the kids if he had them by himself. I foresee a future of the kids being split up, some with you, others visiting dad at times but never all at once...
Please get help for yourselves. Therapy is a good start but you also need TIME and lots of it, without your kids. If you cannot afford more respite care than the 10 hours a month for which you qualify through public programs, please, please, right now Google the phrase "parents of special needs children support groups" and your geographic area and find a support group where you can meet with other parents who know what you and your husband are going through because these parents have been exactly where you both are. They can provide help and support and connections to resources that we, who don't have an SN kid, cannot begin to provide. Turn to those who have been in your shoes! Don't wait another day. Find a support group, in person or online or both. Ask about the toll on a marriage, ask where to locate sitters in your area who are experienced with SN kids, etc. Get your husband (who sounds depressed and burned out) to connect with other men who have SN kids -- he needs to talk to other men who know how he is feeling.
Good luck and do not be afraid to ask for help or go to therapy yourself if your husband won't go. If you do not care for yourself, you cannot be there for your kids.
Loving a child & being able to care for a special needs child when there are other relationships that need to be nurtured & maintained (spouse, children, other family member needs, etc.) can cause a lot of internal conflict. On one hand, you want to do everything possible for the SN child, which takes a lot of your time, energy & emotional output. On the other, you want to be able to give just as much to everyone else in your life (& rightly so).
I know many years ago, there were "institutions" that families could turn to. Now, it seems the help has changed towards offering programs & in-home assistance. But there are still residential programs for children & adults.
The site I'm linking below is for a facility that offers residential therapy, & seems to be child-focused. Letting your child live outside of your home may not be something you & your husband are comfortable with, or perhaps even considered. In addition to this, the site also has a wealth of information available through links to programs, FAQ's, etc. that may offer help.
You didn't mention what type of care assistance (if any) you have for your son, but it's possible that Medicaid would be something he qualifies for, which could open doors to in-home therapies, developmental programs & care-giver relief for you & your husband.
As for your relationship with your husband, I think having 'tricked' him into therapy may have damaged trust between the two of you. It sounds like he is unsure of how to proceed as the father/husband/head of household in your family, and instead is taking things one day at a time, which doesn't give him any "light at the end of the tunnel".
It sounds like (& I'm not saying this IS what has taken place) you are asking him to follow through on things that you find helpful, & are disappointed when he rejects those as viable solutions for him. If you haven't yet, ASK your husband. Something along the lines of:
"I know we are both overwhelmed. I want us to get into a good place, as parents, as spouses, as friends. I find it helpful to XXX, what would be helpful for you to feel like you are doing more than just surviving where we are at right now?"
Maybe he would be more comfortable finding support in a group of other parents going through similar trials, or talking privately with someone from your church, as opposed to a therapist. (Therapists can come with assumed stigma, & not everyone is comfortable with the thought of needing to talk to someone professional, or taking medications for situations).
Be supportive. I think pointing out that he 'blows steam' & threatens divorce is helpful to redirect his thoughts to what he truly wants, but try (I know, hard, esp in the moment!) to do it without challenging him to follow through, or threatening him with a bleaker future with the kids if he does. I fear that will only further drive a wedge between you both.
Here's the link to the info above. I hope that you can both get the help & support you need, & can work on making a stable environment for your son, other children & each other, with love, care & nurturing. T.
You say you have no help..... so, the quick answer is to get some help. Is there a support group? Maybe through one of the hospitals or Drs that your son sees? Other parents who you can get to know who have kids in your same situation?
I would think a support group would do more good than medication. Medication, if there is not a medical need, is just a coping mechanism that is really no different than alcohol or watching too much of the Kardashians. It's better to actually put in place some HEALTHY coping mechanisms... like nights off and stress-reducction techniques.
So - get a babysitter MORE often. FOR ALL YOUR KIDS. So that ONE NIGHT A WEEK the two of you know it will be JUST THE TWO OF YOU. That way you have less time between "breaks" and you can look forward to it.
Then, hire regular help with your son. Just having 4 kids can be a significant amount of stress and chaos. Add in that one is special needs.... and that can throw everything off. So, you HAVE to get help.
Your husband probably doesn't WANT to be married. But he isn't leaving. He needs to feel needed and wanted as a man. It's simple and shallow, but it's a personal need. I know it seems like to ask you to be a "wife" is asking too much when you have all the kid stuff to do... but that's why you need to reduce some of the kids stuff so that you CAN be "wifely", if you know what I mean. You HAVE to get the "romance" back in your relationship.
Care.com will have some RNs that will babysit special needs kids. Maybe try there. Or get someone to clean or cook. So that you aren't doing it all.
Good Luck.
I am sure you would love to be alone some times as well, but as a mom you cannot walk away from your kids, and if you divorce make sure he knows that the child care will have to be shared and I don't think it will make the situation easier, just more complex, expensive and sad. It does suck that life is so hard for both of you and it is unfair that the other 3 kids get less time and hubby and you even less together or alone. But if he threatens divorce I would sit him down and go through the realities: another apartment for one of you to live, he will have all 4 kids all at once all by himself alternate weeks (or however you agree to child care, but let him know he cannot just walk away and leave you with 4 kids to take care of), that you will need alimony and child care in order to live and take care of 4 kids plus sufficient to hire a sitter or care giver for your son if he expects you to go to work, and, and, and. This does not even address the love that there once was between you that made these 4 children. I imagine you both feel trapped by your situation. I would sit my husband down some time without 4 kids around (lunch date?) and have a very calm low key discussion about how to improve your lives. In a brain storming session no idea it too crazy or impossible, so lay all options on the table all the way up to and including giving you child up for adoption or putting him in a care facility or hiring a nanny for the kids and you going to work also, adding a mother's helper several nights a week so you can spend time with the other kids, contacting state agencies for help (calling 211 will get you to a search agency that will guide you for free to the right help provider or go to their website http://www.211.org/), moving closer to family, or to a state/region where life is cheaper so you can afford more paid help, etc. etc. Don't let not knowing what to do keep you in an impossible situation longer, but reach out and learn about what options there are and what agencies exist that can help you. Even call your own town hall and ask what kind of aid or volunteers exist that could help you. There is help and hope out there. (((hugs)))
Your son must go to school right. You should have access to social workers, all different therapists, and mothers support group. I would take advantage of anything that is available. Have you thought about a weekday residential program. It sounds like the problems in Your marriage are related to the great needs of your son. There are respite programs available. You need to ask. Sounds like you and your husband need some time alone. Like several days away. Hope things work out for you.
S.:
Your post was very hard to read. I'm sorry - not to add to your stress, however lack of paragraphs - people will miss things. So If I miss anything - I'm sorry.
1. Your son.
You need to find out what your insurance covers and get help. If that means having someone - like an occupational therapist come in twice a week to help out - then do it.
Talk with the doctor's - find out what you can do to help your son. Tell them you feel like you are confined to your home due to your son's issues and that everyone's life is suffering - if that means you need to go on anti-depressants - then maybe that will help. I don't know.
2. Your marriage
You need to decide if you are better off with or without him. NO one can make this decision for you.
He needs to make a decision as well. He can't keep threatening divorce. I love that you said - put up or shut up! YOU GO GIRL!!
3. Your husband. He needs to make a decision. He needs to deal with his life. Like you stated - he can run away - but he can't hide. He will ALWAYS be their father. So he needs to find a way to deal with it.
Love does not make a marriage work. It takes a lot more than love! Respect, honor, commitment, loyalty, friendship - and so much more!
As to counseling - sorry - you BOTH need to go and figure out how to deal with your deck of hands. Communication needs work - throwing out divorce every time he feels overwhelmed isn't helping.
HE NEEDS TO GO AND TALK TO SOMEONE....period. I wonder if his work performance is being hindered as well with all that he has going. What about your job? Do you work outside the home? IF so - is this wearing on you too?
I would hire someone to come in - check with insurance - and get your son help. Get YOU help. I realize I don't have a special needs child - so I don't know exactly what you are going through - but I can tell you - that you can't blame everything on your special needs son - not that you are directly - but it's a HUGE chunk of your life.
I would go to church as well. I would talk to my Priest, Rabbi, Pastor - and find out if there is a person in your church who handles special needs children - maybe they can offer support.
Find a special needs support group as well. There you will find more resources to help you.
Good luck!
Prayers to you!
I just did a quick search for autism support groups in your area (Kansas City), and got several results including these (which all looked like good resources, or at least a good starting place). You don't mention being involved in any support groups, but when you're isolated from family and friends because of something like a special needs child, you need to find other people who can understand firsthand what you're dealing with and give you the support and encouragement you need. I noticed that the first link also had stuff specifically geared towards dads, which it sounds like your husband could really use.
http://www.missouriautismcoalition.com/local_supports
http://www.autismspeaks.org/resource-guide/by-state/91/Su...
You need more help with your SN child than your husband can provide.
You'll be dealing with caring for your son for the rest of your life and then it will be up to an institution to care for him when you are gone.
Life in your home revolves around him not just for you but for your husband and other kids too.
Is it fair to them?
You have to be a parent for all of your kids - not just one.
I don't think your husband can deal with this.
I'd have a hard time with it myself.
Is there an institution that can care for him now?
It's not going to get any easier as he gets older and stronger.
I think he needs more help/care than you can provide for him.
It's hard but I think you should consider that your son might have to live somewhere else.
I think it's probably very easy for those who have not walked in your shoes to sole out pat advice. So I'm not going to try.
All I can suggest is that I'll bet a marriage with a SN child involved is a pressure cooker. You've GOT to build in some pressure release valves, be it counseling (individual, family or couples), a support group of parents facing similar challenges or making the mist if your respite care or trusted sitters to get some couple time with your husband.
All the best!
Check out www.autisimspeaks.org - Easterseals.com but also look on www.meetup.com for a group for mom of Autistics. You can get SSI and respite care for your son.
There is a lot of help available all you need to do is look for it. Once you are able to get some help you two need to start dating again. Mom and Dad time with no kids.
Hubby needs to be reminded that he is just as responsible for this child as you are.
I am so sorry your life is so difficult now. Just wanted to send you a hug.
I don't have any solutions but I do think it would it would be much harder if you divorced. I hope things get better for you soon.
I have a very good friend who had a son with Cerebral Palsy. She was a nurse her husband was a computer programmer they they also had 2 younger daughters.
They had full time helpers who came in to care for the son. This helped a lot with his his, feeding, changing, his laundry..etc.. While he was in school all day, of course he had his own aide..
Remind your husband , he will always be your sons father, so divorce means he will only have the kids 50% of the tIme, so you will only have them 50% of the time too. Figure out how that will work out?
You are in one of the most difficult marriages there can be. A family with a member that needs full time care. There are support groups, there is counseling...and there probably some ways to adjust your life styles.
Reach out to other families and find out how they handle their marriages. He do they handle constant care giving. How do they help their other children so that they do not get lost or over looked?
You are stronger as a couple. You do need time together alone to reenergize your marriage. It takes constant work in "typical marriages" so I know in your situation ,the 2 of you need a break together...figure out how to make that happen every few months or at least once a month with you all and the girls going out and son,gets to have his caregiver at home.
Can you talk to social services about getting help for your child? You could possibly get help at the house. You also need the professionals to tell you if your child will ever be able to function as an adult. There are choices that you as a family can make if he will always be a child mentally.
You need to get a divorce lawyer and go sit down with him and discuss what happens with your husband if you divorce. Your husband might not want to be married anymore or be at the house, but he has to help take care of his kids. I would NOT have told him to leave. Instead, you should have told him that he is welcome to take care of the kids himself without you. And then YOU take off and have a breather. Let him have to deal with the kids by himself.
When he finds out from his lawyer that your lawyer is going to ask the judge for joint custody where HE has to actually take care of all 4 kids together, he might stop threatening divorce because he will realize that you take care of these kids 80% of the time.
Don't let him think it will be easy street for him if he leaves. Not only will he have to foot the bill, he'll have to handle the kids by himself. Change your way of thinking here. He wants out of the work of the kids. Don't let him out of it.
Depression and stress take their toll on people, and they are conditions that affect the whole family, not just the person suffering directly. And a special needs issues takes a lot of time and effort and energy, certainly.
As you've seen, you can't trick a person into counseling because as soon as they catch on, they bolt. I understand your desperation of wanting to get him there, certainly. I also have suffered from depression so I know what an effect it has and how hard I was to live with - so I get where you're coming from. It's good that you are getting counseling for yourself - keep doing that even if your husband won't go.
I've been working with a lot of people who are finding great success with sensory issues in children - with a simple and approach. I'm confident that you could reduce the severity of your son's responses to stimuli. It's actually very similar to what I did to get through my depression. I'm now medication-free and have a lot less stress and more stamina.
I also know what it's like to have non-supportive family, so I really recommend this approach. It's not going to solve everything but it can really mitigate the outbursts and the reactions, and then at least you will know what you are dealing with.
I work with children like this. Get him earplugs, earphones, ear pieces whatever, and begin to take him to things again. You can't hide out. And tell your husband again I guess over and over how much you love him (oh so sad I am sorry). In my job we take the children to concerts, band shows, etc. and we let them wear these things to cover up the sound. Their bodies are obviously so sensitive to this. If there is a problem we do leave with them for a bit. You shouldn't have to be alone with this. So tell your husband you aren't putting up with his guff, you and he can do this together. Take the lead and see what happens. Don't let him use this as an excuse to make your marriage difficult. He can learn to live with this.
