parenting an SEN child

[bilcar]

Hi, I last posted on here a while back. My Son is nearly six, he has mixed receptive and expressive speech and language delay which effects him socially and academically and he is under assessment for ASD. He seems to be about two years behind his classmates, we are hoping for a specialist school place soon. He has lots of strengths, sunny personality, very good long term memory, very friendly, good problem solving skills. His possible ASD can make him challenging. Do any other Dyspraxic parents have SEN children and how do you manage? We are getting support from outside agencies. My Parents are very supportive but they are older and my Dad has health issues. My husband has his own personal issues and possible mental health and High Functioning ASD.

[FrankieSoup]

I have kids with varying… quirks. And various diagnoses to go with them. I’m also newly diagnosed dyspraxic.

Is there anything in particular you would like to know about?

I’m not sure where to start in describing our family, but the rbook ‘Growing Up Happy’ by Jenny Barnett was a real turning point for us. Also only reading books by Autistic authors and YouTube channels like how to adhd. I’ll try and write more tomorrow but if there’s anything in particular please just say

[bilcar]

Thank you. I just wondered how you help
and support your own children when you have your own difficulties yourself? Does help from professional agencies that support families help for example?

[FrankieSoup]

I think the most helpful thing for me was sitting down and looking at what areas in my house weren’t working- for us, that was 1 getting ready in the morning, 2 cooking, 3 tidying up, and 4 leaving piles of things out around the home.

1. I put all the cereal, bowls etc on a tray and all the dinner condiments on a different tray. After dinner, I put the breakfast tray out and after breakfast I put the condiments tray out. There’s scoops for cereal so kids can get their own and know how much to take. That gives them agency and lessens my workload
2. “Cooking” is a bit nebulous- I can tell you what we do or recommend books?
3. And 4. None of us have good object permanence so we forget stuff exists if we can’t see it, so we left stuff out that we didn’t want to forget. We started putting things we need in deeper storage (ie school books in wardrobes) and clothes in full view (ie in see through plastic containers in the room).

Hopefully some of that helps?

[FrankieSoup]

Also, if you do sit and figure out what’s not working and want to ask about that, please just shout

We don’t really get outside help. Mum babysits for me every so often but it’s not a lot. We do get some money (disability living allowance) but that’s being phased out for universal credit (we’re in the uk - not sure where you are?) and I don’t know how that’s going to work going forward. We use it for things like sensory pressure vests, petrol to go to a smaller school (we’re zoned for a really big one), and it covers the extra wear on clothes.

[bilcar]

Thanks. I think just practical tips on being organised can help, I will try those if they make life just that much easier. My biggest concern is my Son isn’t aware of danger, he’ll run off if we are out and about, I can’t keep hold of him or catch him. He tends to climb up by open windows and I have to prise him down. Really how do you manage to keep your children safe?

[bilcar]

I also live in the Uk

[FrankieSoup]

Thanks. I think just practical tips on being organised can help, I will try those if they make life just that much easier. My biggest concern is my Son isn’t aware of danger, he’ll run off if we are out and about, I can’t keep hold of him or catch him. He tends to climb up by open windows and I have to prise him down. Really how do you manage to keep your children safe?

We had a runner rather than a climber. In car parks or after school, they would just take off at a run without any concern for their safety. I used baby carriers/slings a lot and either had the youngest one up on me so I wouldn’t have to abandon a buggy, or the oldest one up so they couldn’t run off. I had to stop doing the later when my eldest reached 7 or so because they just got too big. They’re 11 now and it did get better with age.

Friends with a climber had great success buying a an indoor climbing frame for the child’s bedroom- basically to redirect dangerous behaviour to something safe, rather than trying to change what the child was doing and they seemed to have great success with that, but that’s not always possible because even from Amazon they’re not cheap and obviously if you’re renting, drilling bolts into the roof is … problematic.

Do you have people around you to chat to? Not necessarily about parenting but just to take some time for you? As a society we act as though “selfless” is the best thing a parent can be, but if you start lessening yourself, forgetting who you are, this can all become much harder. You’re important and you matter too. It sounds really odd, but when I started showing my kids that I cared about me, they seemed to settle more - almost have more confidence in me.

I don’t know your family situation but I did a lot of the very early years alone - my husband isn’t from the uk so there were issues there with work and travel and family etc. I found it really useful to try and be my own best friend- ask myself what I’d tell someone I loved in my situation and then try and act accordingly. That helped a bit too.

If means stretch to it, convenience food is a god send - cans with ring pulls, garlic in tubes, pre chopped frozen onions, cereal bars…. Anything to win some time and that will make your life a fraction easier.

[bilcar]

Thank you. There are definetley things to take away from your reply. Having time when conversation isn’t just about the kids and our worries about them. Appreciating those who do help out more, meeting up with friends to chat about topics other than our kids, My husband does his bit but he struggles. I’m very lucky that my Parents particularly my Mum is very helpful and supportive, my husbands family give very little help but sadly his holding out for the day when they’ll become much more supportive, he seems to only want their help which makes things very difficult. One thing we have agreed to is a backpack with reigns for going out in open spaces

[bilcar]

Cooking basic meals is manageable but multi tasking, cooking more than one element is difficult.

[Elwoodyn]

I understand that it is very difficult for you now, but I want you to be strong and clearly understand some things. There is no cure for autism spectrum disorder nor a universal way to treat it. The goal of treatment is to maximize the child's ability to function by alleviating the symptoms of ASD and supporting development and learning. Your child will be able to become a part of society only if you, as a mother, do everything possible to ensure that he receives all the developmental and educational classes he needs. I am the mother of a child with autism adopted through [illegally posted url removed]. It was my choice, and I am doing everything possible so that my baby gets a chance to live a full life as much as possible. If you need moral support, you can always contact me.

[bilcar]

Thank you very much. It is comforting to know there are other Parents in similar positions out there. We are awaiting help from Family Support and we are on their books. My son has had the first part of his ASD assessment and he was very lucky to get a place at the Specialist setting we wanted for him this September. It’s a school
for general SEN but they do have pupils with ASD. He definetley has many ASD traits. I will contact you for advice or just to chat if I’m concerned or struggling. Thank you again

[bilcar]

Welcome to the forum

[bilcar]

I have purchased and I am reading Growing up happy. I find the tips very simple and helpful so far. I have started to apply some of them.

[bilcar]

Thanks for the recommendation