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Step parenting Children with Special Needs

By: Elizabeth Grace - Updated: 14 Dec 2017 | comments*Discuss
 
Children Disabled Special Needs Help

Step-parenting can be a difficult endeavour and with special needs children who require additional help and support, the job can be even more challenging. But as all parents and stepparents know, loving a child and having that child love you back is one of life’s sweetest experiences, so making the effort to be the best stepparent possible is well worth the work and worry.

Learning about the Needs of Your Special Needs Stepchild

All children, regardless of their health, need some of the same basic things; beyond food and shelter, they need to feel safe and loved, and they need to know that no matter what life holds for them, there are people who will always be on hand to offer help and support. Some kids, though, require more than their peers due to a physical, mental, or emotional condition, so the significant adults in their lives need to educate themselves in order to provide the best possible care.

Whether a stepchild is physically disabled, intellectually challenged, or has a behavioural disorder, one of the best places to seek information is from the child’s doctor. Children with special needs may require professional assistance, such as physical therapy, speech therapy, counselling, or other treatments, so stepparents must first understand the child’s condition in order to get them the help that they need. Natural parents can be a great source of information as well, as they’ve likely been dealing with the child’s condition for longer than the stepparents.

Understanding the Physical, Emotional, and Financial Aspects of Care

Providing help to a disabled or special needs children can be physically and emotionally exhausting, especially if the children require constant care and attention. In addition to the difficulties of providing hands-on help, ongoing care can become financially burdensome, but in some cases, financial assistance is available for families with special needs children. Social workers can provide information and direct parents to agencies that may be able to help. Hiring outside helpers, even if it is only for an occasional break, can be beneficial to parents and stepparents who may sometimes feel overwhelmed by their caregiving responsibilities.

Following Your Spouse’s Lead in Caring for their Child

Parenting can be stressful, whether the children have special needs or are perfectly healthy. Stepparents can have an especially difficult time because their ideas may be different than those of that natural parents, yet when opinions vary, the natural parents have the right to make the final decisions. Often, stepparents provide a great deal of the day-to-day care of their stepchildren, so it can be hard for them to sit back and keep quiet when they feel that their opinions could benefit the children. The input of stepparents can be quite valuable, though, so they may want to discuss their ideas first with their spouse and then let them bring it up to the ex.

Exerting Patience with Your Special Needs Stepchild

Caring for children with special needs can require a great deal of patience and when carers are stressed and sleep deprived, patience can be hard to come by. It’s important for all caregivers, even those who are family members, to take time for themselves in order to rest and relax. In order to give their kids the help and support that they need to grow and develop well, parents need to take some time away to pursue hobbies, socialise with friends, and spend one-on-one time with their spouse and other children. While it can be hard to break away from children with special needs, parents need to remember that they’ll be better able to provide care for others when they take good care of themselves.

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I have been with my partner for 6 years. Lived with him for 4. We have his 26yo Daughter on a thrusday and Friday week in week out regardless of holidays or Christmas, we are never allowed by the mother to deviate from this pattern. The mother has mental health issues, won’t speak to any of us about anything including daighter’s care. She has brain damage from a virus as a toddler (I don’t know the name of it) but she still has seizures when asleep. She looks about 15 and probably has the capabilities of a 4yo. I am a primary teacher so know child development, but have no children of my own (sadly). Recently, the daughters behaviour has got so bad that she spits screams and lashes out when you ask her to anything: got to the toilet, go to bed, eat, drink, put the iPad away, take her medication. We are at the end of our tether. She has a social worker but they have been taken in by the mothers lies that everything is ok and won’t listen to us. She really should be in resitndtial care, but the mother won’t hear of it. She says even respite care is evil. So daughter goes to a carer’s house on a Monday and Tuesday (mother’s house is hoarders paradise), her older sister has her on a weds, we have her thurs and fri and the mum supposedly has her sat and sun, but we hear of both her sisters being asked to have her regularly. Where the hell do we go for support? How do we get social service to listen, and how do I get this moving without looking like I’m trying to get shot of her? If I thought it wouldn’t come back to my partner I would make an anonymous disclosure to adult safeguarding but I fear it will come back on him..... any advice gratefully received. Last time I found a website for help it changed my life forever, and for the better. Here’s hoping. K
Kateykins - 14-Dec-17 @ 9:53 PM
@Another DS stepmother - wow. That's pretty selfless giving your life over to caring for your stepdaughter, as it must be full-time care. I can't comment on this as despite your husband being a terrific guy it's a massive undertaking, especially as she is difficult. I hope you get some sort of respite. I find it difficult with my stepson's autism, but in comparison I've got it easy. Thank you for drawing attention to this.
RuthAT - 5-Dec-17 @ 1:54 PM
When I submitted, it cut off the last of my post.Anyway, the gist of the last piece is that my husband is thrilled with the changes in his daughter, and your input might be a gift your husband needs to make changes in your stepson's life for the better.
Another DS stepmothe - 4-Dec-17 @ 11:04 PM
@stepmom:I have been married for almost 4 years to a widower with an adopted (as a baby) daughter with Downs Syndrome who is 26 who lives with us.I sympathize with you greatly. Regarding one of the replies you received "...you must have known what you were taking on...",I completely disagree.No, you don't know.You know it will be difficult, but you hope you will adjust. I'd never done this before. I don't have the connection of blood or history of care when she was little and cute to give me a bond with her. I don't have another house to go home to when she drives me crazy. She's not my daughter, and yet I have to limit my life and my freedom and my future and must cook and clean and do things for her potentially for the rest of my life, even when I reach old age (the idea of which gives me occasional internal panic attacks and more often spells of depression). I come from an intelligent family where we always talked a lot and discussed reasons for doing things, and I talked constantly to my children when they were growing up, teaching them why things are the way they are and explaining why I asked them to do certain things. But I find daily living with my stepdaughter, who has a very low IQ and cannot be left alone for long, to be very stressful.One can hardly communicate with her. She can never understand any explanation, any "why", cannot be told an "if...then" direction, cannot understand time or money or numbers or dates or most of what anyone says [unless it pertains to food, when she miraculously figures it out]. To never be able to hold a conversation about ANYTHING drives me nuts. I could not anticipate how this would affect me day in and day out.No, you don't really know what you are getting into. Stepmom, I believe you do have a right to give input on how your husband interacts with and the care of your DS son.You live in the house and sacrifice greatly for the situation, which gives you a big stake in the whole thing.My stepdaughter is 4'9" tall and was 245-250 lbs when I met my husband.She pooped herself all the time and was a round stinky mess.(Why didn't I run the other way?I ask myself that often.But my husband is an absolutely terrific guy, the kindest and sweetest man I have ever met.)Why was she so big?Apparently, from the time she was young, they let her eat everything she wanted with no limits, simply accepting the fact that a DS person is likely to be overweight.A few months after we started dating, I began getting the courage to say things like...."she doesn't need 2 hamburgers, why don't you only give her one?Girls don't need to eat as much as guys".Or "this snack is healthier and has less calories than that one".By completely changing and limiting her diet, she is now under 130 lbs. If I had let him continue parenting the way he was, it wouldn't have happened.However, I knew that if I had to help with her hygiene care and do her laundry, I couldn't live with
Another DS stepmothe - 4-Dec-17 @ 10:58 PM
@workingtogether @stepmom - it's different horses for courses. You're both doing great jobs, and neither of you have an easy job. It is about working together and keeping talking things over and agreeing to differ sometimes. We're all just muddling along - we can only do the best we can with the situation we have. Good luck both of you - reading this I realise I don't have that much to grumble about with my own step-teenager.
Alice^ - 18-May-17 @ 12:26 PM
I have been the step parent to a profoundly autistic young man who also has learning difficulties for the last 6 years. I realise that this is a different diagnosis which comes with different challenges but I have to disagree strongly with JFD67. My step son's mother left him 7 years ago as she missed her social life too much and couldn't deal with his behaviour any more. She has not paid a single penny in child support, ever. She used to have him fortnightly and now he sees her once a year as she moved so far away. My husband was left to pick up the pieces, both emotionally and financially. When I met my now husband, he was stuck in a rut as far as my step son's behaviour is concerned. I would deal with my husband's emotional meltdowns as he could not cope, as well as try to educate myself on autism.It was me that suggested we contact external agencies to get behaviour therapy and occupational therapy for my step son as well as finding social and sporting activities as his parents were far too defensive and resistent to looking for outside help from anyone. Now his mum is completely out of the picture - her choice. I have had to give up my professional career, I'm the one who collects him from school when he is sick and I am the one that takes him to all his medical appointments every week. The previous poster says that you should have known what you are taking on when you married him. I disagree. Noone can see into the future. Life changes.Nor can you always predict caregiver burnout. I could not have known that my step son's mother would do a runner completely (she was giving us a fortnightly break and now we never get a break), I could not have predicted that I would be the one to have to give up my career (my husband earns more plus his job relocated him), nor could I have predicted all the different and difficult behaviour that has come along with my step son going through puberty. Sometimes biological parents need to stop being so defensive and resistent to change for the best interests of the whole family.
workingtogether - 17-May-17 @ 7:53 PM
@Stepmom - if you're looking for affirmation, it might be slow in coming, especially if you are trying to change your husband's way of dealing with his son, a son he has known from birth. As you say, it is really not your place to impose opinions on how your husband deals with his son. Yet, reading further into your comment that is exactly what you want to do. You married your husband and his son comes as part of the package and you must have been aware of this before you married your man. Therefore, you must have known what you are taking on. The fact the son's mother has died must be a massive shake-up for his son. Leave your husband to get on with his relationship with his son in the ways he knows best (you can't change a habit of a lifetime). I feel your best approach is not to try and change his ways, but to support your husband and his son by working with him and not against him. If you haven't dealt with a Down's Syndrome person before, then you don't really have the answers i.e your way is not necessarily the right way. This may not be what you want to hear - but as a mother of a DS child this is what I personally feel. I know I'd hate it if someone came in and tried to change my way of doing things with my daughter. Jen.
JFD67 - 9-May-17 @ 11:21 AM
I recently remarried. My husband has an adult son with Down's syndrome.His mother is deceased. I realize that it is my husband and not me who is the guardian of the DS man. I realize that it is not my place to impose my opinions on how to deal with his son. Yet, since the young man with DS is part of my life, it is frustrating for me to stand by silently while my husband deals w his son in ways that I disagree with. I realize that a lot of the DS man's life is not my problem,buta lot of it is my problem.When he is with us, it affects me. And in my opinion, he would be easier to deal with if some things were done differently. I have to stay silent and put up with his behaviour (true I can set some boundaries for myself vs the young man,but in reality, there is a lot that affects me no matter what boundaries I may try to create ). My hus gets touchy about my ideas of how to guide the young man. Ialso know that my hus must appreciate whatever I do for his son, he must understand, deep down, that as much as he adores his son, taking on a stepson w DS is not something to take for granted. Yet I feel I would like to have more aknowledgement from my hus for what I have taken on/ deal with constantly. Do you have any suggestions or words of encouragement /support for me? Perhaps there are others w similar experiences who can compare notes/lend support?
stepmom - 8-May-17 @ 10:41 AM
Marcus's Mom - Your Question:
I need some advice on blending my fiance and his 2 boys (13 and 17) with my 17 yr old son with severe Cerebral Palsy. I love my fiance very much, but he does not involve my son with his children or really get much involved his self. He says my son is not "normal". And he is not going to make his boys do anything that makes them uncomfortable. Like visiting my son or helping with my son. In any way. My fiance is also not interested in physically helping with my son. Am I making a mistake? Or is this normal and I am expecting to much?

Our Response:
I think in this instance this can be only a question you seriously ask yourself. The fact you are having to pose the question in the first place points to you having doubts and those early 'screamers' or warnings are always something we should listen to, as they are likely to become very much more embedded the longer the relationship continues. I'm afraid that by stating your son is not 'normal' would be very off-putting for most, as this reaction is less than empathetic. By his very actions, he obviously wishes to distance himself from any relationship with your son, which will be of no help to you in the future - so please be aware that you will be doing much of the caring/visiting of your son alone. I would wait a lot longer before I took the leap and tied the knot here.
BeingAStepParent - 18-Feb-16 @ 2:02 PM
I need some advice on blending my fiance andhis 2 boys (13 and 17) with my 17 yr old son with severe Cerebral Palsy. I love my fiancevery much, but he does not involve my son with his children or really get much involved his self. He says my son is not "normal".And he is not going to make his boys do anything that makes them uncomfortable. Like visiting my son or helping with my son. In any way. My fiance is also not interested in physically helping with my son. Am i making a mistake? Or is this normal and I am expecting to much?
Marcus's Mom - 17-Feb-16 @ 10:01 PM
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