I need help and I don't know where to turn to.
Hang in there I'm extremely emotional and don't know how to get this all out so it may seem confusing.
I'm a 33 yr old single mum, I have 2 kids, my daughter who is 11 and my son who is 7 they both have different fathers.
My daughter is genuinely a good kid, she has good grades, she does her chores and home work when shes supposed to, she has an abundance of friends and a really good relationship with her father. Her and I also have a very good relationship too, I never really have anything to worry about anything with her, touch wood! she's just a happy go lucky kid.
My son is on the other scale of things, he has ADHD Combination type and Autism level 2 with no intellectual disability. He has no relationship with his father what so ever, he took off about 2 1/2 years ago after the trouble started with my son, I think he found it too hard. He dosent have any friends at school and he is struggling even though he has a modified learning program with an intergration aid to help him. My son is 50% of the time a really really good kid, he's so cheeky, loving and extremely funny but he has alot of anger and I'm dealing with it on my own! He's punched/kicks holes in the walls at home and school, thrown multiple things, hurt other children, broken TV'S, Laptops, chairs, tables, an abundance of toys I've brought him, basically anything he can get his hands on in a fit of rage he will brake! He has tried to commit suicide twice during an anger out burst, once with a large knife and another time with a power cord. He's also a flight risk at school and holiday program, even yesterday it some how got to the point where he took off at his holiday program after something set him off and he climbed someone's roof a block away from the centre and refused to get down, by the time I left work and got there he was screaming at the top of his lung throwing things while 4 police officers and 3 educators where trying to get him off the roof! They've now banned him from the school holiday program due to risky and dangerous behaviours with 2 1/2 weeks left of the school holidays to go but couldn't tell me what happened for it to get to that point!! I've called everywhere to find another place for him but the closest place is 18ks
He has an NDIS plan, a behavioural therapist, psychologist and a speech therapists, he's had these professionals in his life for about 15 months now but he rarely engages with them and I havent seen any progress as yet, they do visit his school for appointments because that's where is main issues are. Hes also on medication for his ADHD, we've tried 2 different types so far ritalin 2 times a day now to concerta onve in the morning but it seems to wear off too quickly. Given his size and height his paediatrician wont prescribe stronger medication because his appetite has become a problem! Hes lost weight but on the other side of things his school and holiday program can handle him when he is on his medication, without them he would expload multiple times a day to the point it becomes dangerous for him, teachers and other children. I am really trying as a mother to help him but he can't communicate his emotions very well, I do breathing techniques every morning and night with him, I positive reinforcements of good behaviour as well stickers, reward charts and things like that but punishments are something I have to tip toe around due to his explosive behaviours. I pick him up when the school or holiday program need me to, I answer every phone call which has been weekly for a long time now, I've created plans for the school and his holiday program to follow and have regular zoom meeting so melt downs are minimised but they still happen! I also can't send him to a school for autism because he dosent qualify, not having an intellectual disability he gets pushed to the back of the waiting list.
I also have to work! I did take 6 months off work this time last year when it got really bad for him but the disability support pension wasn't enough to pay my mortgage, bills and food. I tried working part time, the 24- 29 hours the disability support pension allowed me to work but it was so hard doing it on my own I got into a financial hole where I almost lost my house which 12 months later I've finally recovered from. I'm lucky now because my boss understands the issues with my son and has written into my contract that I can leave work when I need to I just don't get paid for it.
I feel really stuck atm, I feel like I'm trying everything for my son and getting no where!! I cry consistently when the kids are in bed, I worry about my sons future, worrying about him not getting enough help and actually hurting someone or going to jail! I worry constantly about loosing my job because of the time Ive taken off to look after my son because no one else seems to be equipt enough to do so. I've been so patience but it is wearing thin after dealing with this for 3 years. I see a psychologist myself but I get the pity treatment like "oh that must be so hard" I really don't need the pitty treatment, I need strength! I'm also lucky that my daughters father is a psychologist and takes her when I need him too, so far she has been ignorant to my sons behaviours as most of it occurs when she isn't around, I really dont want her involved in the behaviour either because she is doing so well, I try hide my emotions around the situation so she can be a kid and concentrate on her own life but it does leak out sometimes.
I really don't know how to keep going! It's so hard and I feel like it's just going to get harder!!
3 Replies
So you are engaging in coregulating. I gather the Psychologist has gone through his early warning signs etc. So the Occupational Therapist visits the school? Cannot emphasise enough the benefits of controlled movement and sensory spaces at school. If this has been missed its a big no, no IMO.
Have any of these specialists visited the school environment and prepared reports on how best to support him. E.g. A Behaviour Support Plan implemented for home and school environments?? Also I find due to lack of resources some schools are not well equipped to handle kids with special needs and some parents have changed schools for this reason.
Make sure these specialists are not just collecting a pay check!!! By rarely engaging do you mean infrequent appointments? You mentioned a couple of meds but I am guessing one would be Ritalin which they usually have in morning and around lunchtime at school as well. Catapres would last longer and at least allow him time to regulate at school so he does not fall behind.
It was recommended to me from an OT to try to engage my son in something like Karate due to the discipline and controlled movement. My son is high sensory seeking and your son sounds similar in this regard. My son loved Soccer. I was nervous at first but it was a win.
Please do not worry too much about how he will turn out. Some of these kids turn out to be the best people. I know one who now works in emergency services and is reasonably well adjusted.
Make sure you change specialists if they are not doing their jobs. I would even consider changing your own Psychologist if you are unhappy with them. You actually would benefit from someone skilled in working with children and adults for you so you can get some practical advice from another source. Expect the school to meet with you every year to explain how they are going to best support your son. Be that squeaky wheel.
Lastly respite, please make sure you get someone to look after him for even an hour so you can go and take a breath <3 you are better able to cope if you are having breaks and you will feel more connected to him. Make sure you engage in some joint activities with him, especially things that involve movement.
Remind yourself you are doing a great job, trying your best for your son. He will remember x
He moved from Ritalin 2 times a day to the concerta in the morning. He has catapress to sleep though.
His therapies sessions are at school as well, I've just hit a brick wall and feel like imbearly surviving!
Oops sorry, yes meant Concerta. One therapist had approx 8 kids to see in a school day. It would be great if whoever is managing your NDIS could ensure they are getting the full time they are paying for. E.g. a provider may be charging for a full hour at NDIS rate and only see your child for 20 to 30 mins in the school environment. They will then claim the rest of the time was "notes and report writing". This is not helpful at all and really unfair on your son. I do know some parents have sought external providers to ensure they get the 45mins to an hour.
However, I think the more pressing thing is you needing support. Your NDIS coordinator should know of any opportunities for support in your area. There is a place where they offer accommodation, support and assistance for parents and children in Sydney and if I remember the name I will come back and post it and its not RFW. Please tell your NDIS coordinator that things are really overwhelming and you feel that your son is not making progress. They need the feedback and they are getting paid to help rather than just regurgitating the same plan year after year... yep dealt with them. They are not all created equal.
Also please do not hesitate to be a thorn in your Paediatricians side. Put all of this in an email as sometimes it helps.
I really think his support coordinator should at least be stepping up and advocating on your behalf so you feel less alone in this x