Special needs parenting

This topic contains 9 replies, has 4 voices, and was last updated by  KitKatKitty 2 weeks, 2 days ago.

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  • #221761

    I have two special needs kids, and I’m waiting on testing for the third. It’s been quite a journey learning their specific needs and challenges, and I feel I’m only now really embracing being a mum to special needs kids – I was in the thick of it before, but not openly discussing it. Now I think I can do that and not feel sorry for myself at our lot in life.

    I’m here to chat if any other parents (friends of parents) need a listening ear!

    #221769

    I’m familiar with adults with special needs. I know a number of fabulous people with downs syndrome. In fact, I consider them friends. Special needs is hard work but well worth it. And people are people at the end of the day.

    You’re lucky to have your children and see them grow and explore the world. Because their life doesn’t have to be limited. They can also see the world and enjoy their lives. It doesn’t matter what others think.

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    #221788

    Im mother to three, now all grown up children. My eldest will soon be 39 and he has ADHD dyslexia and some OCD.

    When he was in the first class at school he was bullied so badly I had to take him out and home school him for nearly 2 years. I did it all alone without any support from education authorities and yet I found out a few years ago that some of the techniques I used back then have now become standard. I cant have done too badly then.

    When he was 11 and moving up to higher school I was told not to expect too much and to put him into lower occupational education so that he could learn a trade. But he wanted to be a chef so I fought for him and got him the school he wanted , he didnt just succeed he passed with flying colours but then his food allergies got worse and it made working in a kitchen unsafe so he had to change jobs.. Again we were told if he applied he would get a disability pension and a supported job so that he could be independant.

    He refused point blank. He is now a global manager for a tech company. He speaks several languages and supports tech teams as far away as China and India.

    My younger son is 36 has ADD  Aspergers syndrom and is bi-polar. At school he scored the second highest leaving score they had ever recorded.. But his inability to communicate with people in a normal relaxed way means he choose to work with cars  as he says they are simple and they dont talk back.

    My daughter is 32 she is like me she scores on the autistic scale and could be classed as Aspergers but like me she copes and refuses to be labeled , she has made a career for herself in an all male team in telecommunications and bought a  house aged just 21. She does have OCD is a bit of a germ phobe but again she copes when left to deal with things her way.

    My grandson has severe autism he is 9 and almost totally mute.. through choice. Communicating with him is tasking but when he smiles and you know youve got something right its well worth it.

    Having special needs children is a huge job its 24/7 – 365 even when they are elsewhere you are planning the next challenge the next trip the next hurdle , plus I find these days there are so many parents who are just lazy and undisiplined,  who claim their naughty children are ‘special needs’ that it puts those of us with genuine special needs children in a bad light. Ive seen the stares when my grandson throws a tantrum, my son has been told he ‘just needs to be firm with the lad’ ‘give him a darn good spanking’ etc..

    This is what we are up aagainst on a day to day basis.

    We dont just have to deal with the challenges of our children/grandchildren but also the judgement and the ignorence of those around us.

     

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    #221878

    “Ive seen the stares when my grandson throws a tantrum, my son has been told he ‘just needs to be firm with the lad’ ‘give him a darn good spanking’ etc..”

    This makes me angry. Children should not be hit, yelled at, “spanked” or “given a good hiding”. They may be naughty, but they are also innocent children. Children should be disiplined rather than punished. There is a difference between the two. Admitedly children DO need to be shown it’s not OK to hit mummy or yell in the street, but that doesn’t mean you act as if you’re lacking love for them. Children are very badly hurt when their mummy hisses at them or shouts abuse at them.

    I know I am on my soapbox, but I feel these points are valid.

     

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    #221895

    I used to work with many children with special needs. It was an interesting time as I could see things from the parenting perspective as well as the professional outsider. That said, my input was often over a number of years from pre or first school to adulthood so sometimes ‘extended family’ may have not been too much of a stretch. I could see many families struggle and parents health deteriorate or even have marriage breakups because of the stress. It does get very difficult at times as I have even seen children, usually more towards or in their teenage years, become the abusers rather than their parents. A point to remember even if it were originally the parents lack of skills which caused the situation. This can easily happen if they are unsure in the child’s early years and get poor support from health and social care (it happens). In my view approaching the child in a normal loving way and not mollycoddling them appears the right approach. I just treated them as children and, particularly in situations in which they could understand what I was doing and why, even more as young adults. Not talking down to but placing yourself on a similar facial level when speaking to anyone in a wheelchair is a respectful move. Except when with severe learning disabilities these children are normal in most respects, and even if severe should be given  respect (just remember that they can do silly things and not realise the consequences though, like any children – I have know the odd one who thinks it amusing to use their electric wheelchair in an agressive manner, not nastily but more as a joke 🙂 )

    I remember when working in special schools the teachers often exerted their influence, when required, with a strong voice. It didn’t half make me jump when I was busily working away with an individual child in a corner of the classroom. These schools were the normal school in many respects, just with more  support when required. There was always a friendly atmosphere.

    #221908

    My son and his wife are victims of the self blame situation she went into a deep depression after they realised their son was autistic and blamed herself this turned into descructive relationship behaviour and they split at her request. However they still live very close and co-parent in very friendly circumstances visiting each others houses and now both accepting the others new partner. This has made life for the children very smooth and easy. If only all adults could be this civilised.

    I noticed there was something wrong when my grandson was 18 months he was avoiding eye contact not responding to facial expressions ect. But their doctor said standard testing wouldnt take place until school age , my son pushed and pushed and eventually managed via a hearing test to convince an hearing test doctor that something else was going on. She then referred my grandson for testing and at age 3 he finally got his diagnoses. That way my son and his wife could  start applying for special schooling early giving their son the best chance at a placement..

     

    I see that many parents give up because things take longer to learn or are more difficult to instill they just go with the flow. Often its exhaustion that prompts this but I have always found that routine helps . We had the rule of sitting at the table to eat , my daughter in law just found this too much of a battle and let the chilren wander about grabbing handfuls of food as they passed the table . I had to step in when my son was gravely ill and take care of the children they messed about the first day and were warned ‘we eat at the table. The TV and PC got switched off. and they were told when you finish eating then and only then do they go back on.. They continued to walk away from table so I finished my food and then cleared the table. When they came back there was no lunch. They screamed but at dinner time they sat and they ate and then then they watched tv, we established a routine.

    Once they knew I wouldnt give in it was a lot easier.

     

     

     

    I never spanked my children. I made them face their faults, whenever I asked them to do something and they ignored me they were given a count, 1- 2-3 and if they had not corrected the fault or started to do what I asked by the time I reached 3 then there was a price to pay.. Lego was put in the bin, toys were taken away and locked in cupboards for a day or two.  Puddings were forgone or outings were cancelled depending on what they had done or not done.

    I reached the 3 only once or twice with each of them. Once they knew I was serious they knew to keep to the rules ,I know that sounds really harsh in writing but it was not done nastily or with threats. Keeping 3 young children, two with very specific special needs in order is like herding cats!

    In the end I can say that knowing the way to behave understanding rules and being able to follow instructions gave my children the tools to suceed they all have good jobs two own their own houses and all have gone further than the education system thought they would. It didnt just happen by chance.

     

    • This reply was modified 3 weeks, 2 days ago by  cassandra.
    #221926

    Laughing at the herding cats phrasing. Totally is like that at times here in my house!

    I’m also trying to make it clear what I expect for behaviour, discuss but not let a debate go long (since Ben will try to get the upper hand so many times in conversation with me, rather than listening to get the message I’m giving), and make sure the consequences fit the situation.

    I come from a family background of spanking, and it took me some time to see that it wasn’t achieving the results I wanted. I would rather build a relationship with my kids than have them listen out of fear in the short term and rebel horribly later. It’s about thinking long-term for them as well as myself.

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    #221977

    Every parent has their own method, rebeccajpand. You can’t be that cruel a mum: you seem to have forethought and must love your kids. Kids do know when they’ve been naughty: and do need to be disiplined. I am sure you don’t use your children as punchbags. In fact, my mum – who sadly died in 2014 – lifted my brother up and hit his bottom a few times because he’d been naughty. And he grew up and was never bullied or emotionally damaged. I still stand by my previous post BUT I think you’re doing the right thing to make sure your kids grow up happy and healthy. And they DO need to be shown when they’re wrong and should change their ways, so to speak.

    #222133

    Thanks, KiKatKitty. Very kind of you to say! I’ve gone from an exasperated and overly stressed parent to one who tries to think things through for problem solving. Big difference for us all!

    One of my most successful experiments in giving correction or direction is getting my words down to a short phrase. Like “food focus” instead of something longer, like “It’s time to eat now, let’s leave the talk for later.”

    I’m so wordy that this challenging, but it’s also very rewarding!

    #222217

    Children ARE hard work, rebeccajpand, so you’ve got every right to be exasperated sometimes. A screaming toddler or older child is not easy to handle. You do your best. And you’re only human. You can’t be a perfect parent: very few can. Your children have personalities and their ways. You do what you can do and one day they’ll understand that.

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