So this is the first time I have ever posted anything but honestly I'm at the end of my limits. My child is 12 I have know since he was very young that something was special about him, but because it was my first child I was patted on the head and passed from pillar to post. 12 months ago we were told adhd and referred to more services!! Please let me say that my child has been let down by so many services cahms, Schools and Dr's. 5 weeks ago we went for ados assessment still waiting on outcome, but no one ever gives you a straight answer or offers constructive advice so for everything that has happened and all the fighting to try and get help all I have is a bunch of labels !!!!
Totally, my elder daughter was diagnosed in 2004 and it is still the same cr###p. Hung on. It will start to make sense.
Does he get ADHD medication? Get it, it does huge difference and removes one problem that can be removed by medication.
NAS had an excellent 'Help!' training, a introduction into autism for parents, check their helpline whether they still have it.
I won't lie, it's a life of continuous struggle with schools and other services.
Start reading up on the NAS website and in here, take the asd positive progressive view and help your son to develop a positive identity.
For advice NAS, Ambitious about autism, Special needs jungle, SOSSEN, IPSEA
Autism is awesome boys and girls talk https://vimeo.com/216052066
Look here if anything of use https://community.autism.org.uk/f/parents-and-carers/15468/help-getting-my-15-year-old-daughter-back-into-a-routine
Welcome to the forum, I really understand that feeling of frustration at being dismissed as it's your first child and you don't know what you are talking about! I had my eldest at 16 and I was repeatedly laughed at and told there was nothing wrong with him, he had serious sleep apnea due to his wind pipe and nose being blocked by severely overgrown tonsils and adenoids as well as being deaf! Eventually they sorted it but it took years to convince gp to refer him.
Skip forward many years and I had my daughter, we knew early on that she is autistic but got fobbed off with she is just delayed due to the severe trauma after birth, at 4 gp laughed at me when I took her for sleep problems since then we have been bounced between cdc, camhs and peadiatrics with each one arguing that the other is responsible for assessment! She is now 8 and still waiting.
Luckily she has a fantastic senco at school who is very accommodating of her needs without formal diagnosis, they are still limited with some support without it but do everything possible without.
It is a constant battle, sure it will continue to be but we do what we must I have just lodged several complaints regarding our treatment (or lack of) have you considered this? I don't think services will change unless they are forced to
As others have said, this is the norm. I had the same first child problem and didn't know he had ADD until he got suspended from school at 6!! He then didn't get diagnosed with Autism until he was 11. Where ever you live in the world with a public health service, it is not easy and the answers are limited. We have tried everything and strong ADHD is not easy on the kid or the parent. My only advice from someone who has tried everything (alternative approaches etc). Do yourself and your son a favour and get medication. Concerta is best because it doesn't lead to so many peaks and troughs. Watch out if your kid is gaming however as in my child it led to epilepsy for a while until he learned better habits (don't game straight after taking a pill, don't do certain types of games) and grew a bit and the medication smoothed out. It doesn't cause fits but it does lower the threshold for about 5%? of kids. So just be aware. there's a small chance. On the bright side, I don't think my son would have graduated school without it and the trouble they find themselves in and the vilification from peers does much more harm psychologically than the medication does. No parent wants their kid to take what is effectively amphetamines. But sometimes there are no good choices, just practical ones. Also not all ADHD is severe enough to require treatment and some kids do effectively grow out of it so you need to make a call on depending on the real life behaviour you are seeing. Easiest way to know if they need medication is to try it. If you are seeing a whole different kid then they probably need it. When my son took it the first time, I suddenly became aware that he had never sat still or quietly before. Even when watching TV, he would be humming or hanging upside down off the couch or something. Also trying it with schoolwork gives a good idea. If he is suddenly motoring through some homework, you will know.
Thank you for your response, yes he is on medication we tried for a while without but it was unfair on us all, food and sleep are a problem because of his meds but as you said its been the first time in his life that he can now sit still for a short time. I am now looking at websites just to get information
Thank you for replying I have made complaints jumped up and down for people to listen. His first primary school just asked us to remove him it seems to happen alot that they just pass it on like we are a problem it's so unfair. It's nice to share and hear from other people because it feels like a lonely place sometimes
Thank you for replying his medication has helped but does cause a problem with food and sleep sitting still is better now but still no homework he just won't and it becomes to much for us all, thanks for the information on gaming as he very much likes to but I will keep an eye on that
Homework is more like autism.. It's a familiar problem as well. But to be honest it is feasible. My autistic children do a lot of it in spite of it being a huge uphill struggle, so there is hope,,lol
I hear you. My son is now 6' 3 with 46 inch shoulders but still skinny as a rake. And I remember the days of staying up as late as I could night after night after I found him aged 8 wondering around in the garden at 1:30 am just taking the air. And then the sleepwalking down the drive because of the dreaded Clonopene.
OK, so sleep is a big thing. For you and them. Impulsivity and distractedness is far worse on no sleep. Eventually you will ask for something from the Dr and they will set you up with all sorts of dangerous stuff depending on what is on the public list. What you ask for and insist on is melatonin. Melatonin is a naturally produced substance which is lowered internally by lack of sunshine, screen time etc. So you get your melatonin (You may have to pay and it can be expensive if it isn't publicly funded - but there are even ways around this I found) which also improves immune function. And you start him on 1 mg a night working up to about 3mgs a night if he needs it. There are no bad side effects but it is restricted in some countries because they haven't done enough studies on it.
I take it myself and I love it. You have to be ready for when it kicks in ie: for your kid, in bed with the light off. You get a superb nights sleep and wake up feeling totally refreshed. I have been a non sleeper since childhood and have tried many things. This is the only safe and reliable thing. That right there is the biggest help you can give him. It is safe for an adult to take up to 10mgs but you probably don't need to. With my son we eventually settled on 3mg and when he has a big night or is anxious hyper at bedtime I will sneak it up to 4mg. But that's like very occasional. So that is sleep sorted.
Food, an ongoing battle. He will lose a bit of weight and it pays to check him against growth weight charts year by year with the doctor. Getting him to eat while he is at school is probably not going to happen. We never could. We compensated by getting up extra early and before giving him pills, giving him a cooked breakfast, either leftovers of something he likes or sausages eggs and beans or something. First thing in the morning they are hungry. When he gets home from school, I would try and tempt him in to eating by leaving a snack he could microwave of something he likes. (Yes it can be expensive). Then we eat later at night around 8 when again he is more likely to eat.
At 19, we still have to make my son eat and are still working around his patterns but it can be done. Other things that work are reward cards. You eat lunch today and you earn 1 star, when you have 5 stars I buy you a lego figure, book, movie whatever. Tangible rewards of relatively short duration if you want to improve his behaviour. 1 hour of homework equals 1 star. No long term rewards as they cant visualise it. Maybe its 1 hour of homework then you can go to the skatepark whatever. Clear systems giving rewards for short bursts of action is what works best. Of course this can be hard if you are a working mum.
As for taking on schools. I have found it is a matter of trying to find the best one even if logistically it is more difficult. I had the bad school problem but I found that if you do the rounds and say my kid is a problem please will you help me. You may come across one who says ok. To stop the bullying in the end, we ''came clean' . We had hid his conditions on advice so that he didnt get discriminated against. But in the end, the opposite worked better. When he was 11 we found a school who would take on an aspie add kid. They told the other kids before he came that he was different and how they should treat him. Were the inclusive, not particularly but did he get bullied, no.
Next we did the same at the local catholic college and they let him in even as a non catholic and by and large he was not bullied. Most of the teachers worked hard to teach him in a way that helped. He had as good a school experience as he could have hoped for and I find, in general, being up front and organising support and raising awareness works better than 'fighting back' but this may not be the same for you in Britain. Here in NZ there are still smaller schools where you can expect better teacher/ student ratios or like the primary school of 120 where they told the other kids. You are looking for inclusiveness and I found the catholic system here has it far greater than in public. Smaller class sizes too, this is because catholics have a fundamental belief that 'all lives have value". My normal kids have gone the catholic route now too and my daughters middle school takes all kinds of disabled kids, downs syndrome whatever despite not having a special needs unit or grant. And it works, the other children are taught inclusiveness from age 5 and there is very little bullying. Partly here it may be more like that because many Catholics here are from large Pacifica families who are very inclusive culturally anyway.
Hope this helps
Just one point on the melatonin if you unlucky enough to fall under Sussex partnership area you will have to get melatonin prescribed by a specialist as gp's aren't allowed to give it I know other areas can though
This might seem a silly thing to ask but do you ever feel really confused??? my son hasn't been able to go outside of the house with friends in forever, but he made a friend a year ago and went out for the first time last weekend with this friend. I have been left questioning myself if maybe he is more capable and been not doing as much as he could because I'm to soft? ?