Thank you so much for all your posts!
I'm so proud of him. He was amazing this morning. He looked so confident , it was great.
He's fabulous and would have been every bit as fabulous had he grown into the non verbal, nappy wearing adult we were told he would likely be, I don't want it to seem like I would have valued him any less.
I've been asked a few questions. Feel free to ask anything. I'm going to ask mnhq to take the photo down because I got a pm warning me my son was easily identifiable - thank you so much I won't name you but I genuinely appreciate the heads up! Thank you.
I've had several PM's. I will reply later I promise but I'm going back to celebrating first. X
Just reading this through before I post it and fuck me it's long!!! Sorry.
What did the professionals say - they said that he was severely autistic, that we had to be realistic. Back then it was CARS or something I think, and he scored about as high as it's possible to score!!
My husband was the more adamant out of the two of us that our son would do things in his own time and we just had to be patient. I was more timid and felt like the doctors were supposed to be the experts and we weren't allowed to challenge them or disagree with them.
The team actually tried to get between us I assume to make me change my husband's view and would tell me we weren't being realistic about the future and my husband was particularly in denial and suggested that because of his culture (east African) he was feeling 'shame'. Which was bollocks and bloody insulting. He is and has always been very proud of both our sons.
Our son wouldn't potty train and didn't even show signs of discomfort in a soiled nappy. He used to paint with his poo though. I remember one time he'd used it as face paint and we held him at arms length and took him to the shower to hose him down.
Have you seen monsters Inc? The 23-19 scene? We used to yell "23-19" to each other when we had a poo art situation we needed help with if it was just us there. We would never do that in front of non family. It was finding humour to help us cope, not to humiliate him or laugh at him or create a situation that invited others to laugh.
The doctor told us that he wouldn't use the toilet because he liked the feeling of soiling himself. We thought that was bullshit and said so. We were again told we were in denial and needed to accept what they were saying. They didn't like the fact we weren't compliant. Yes doctor no doctor whatever you say doctor can I clean your shoes with my tongue doctor.
We refused. Said they were being ridiculous. We pushed back and eventually he was diagnosed with non coeliac gluten sensitivity and prescribed gluten free food . Back then you could get bread, flour, spaghetti, pasta and such on prescription. Even biscuits. Although they stopped allowing biscuits a few years later.
He was also as it turned out, severely constipated which was causing leakage. We were told to give him lactalose which we did and between sorting out his constipation and removing gluten from his diet, his bowels were able to recover and over time the accidents stopped. So much for "he likes it".
We gradually reintroduced gluten when he was older as ncgs is not always lifelong like coeliac and they can grow out of it . Today he only has issues if he's overindulged.
At one point we were told that if someone isn't talking by his age then they are unlikely to ever talk and we were holding him back by not agreeing to teach him makaton. We briefly used PECS with him when he was a toddler but quickly realised this was actually reducing his attempts to communicate with us. He didn't need to try if he could just hand us a picture. This is what made us feel that teaching him makaton was doing nothing other than giving him another way to not talk.
What helped us a lot I think is our professions. My husband used to be a social worker specialising in adult mh and disability and I used to work for an organisation that provided supported accomodation for adults with LD. We then started a care agency specialising in group homes for disabled adults.
We had a home visiting specialist from the early intervention team come a few times a week during our son's assessment and after his diagnosis and work with him on things like eye contact and turn taking. One thing he really loved was bubbles. So she would get the bubble mixture and hold it up. When he looked at her face, she'd blow bubbles for him. He quickly learned that look at the face = fun bubbles.
I did the same sorts of things in small sessions of a few minutes each many, many times every day. One thing I did a lot was facial expressions. I'd sit on the floor and do a big grin and say happy face, a down turned mouth and say sad face, a frown and say cross face.
I didn't force him to sit with me when I did all this stuff. I'd sit on the floor and do faces by myself, blow bubbles, sort shapes, put pennies in the oinky pig (😂), loads of stuff.
His active participation was his choice and he could sit for ten minutes or ten seconds, his decision. I would stay there and play. He could sit with me, engage, or ignore me as he chose
I never forced his participation or his continued participation because eye contact and interactions were so overwhelming for him, he needed to be able to walk away on his terms.
I spent much of my day on the floor with bubbles and toys and things, just playing and creating opportunities for him to choose to engage. I would be sitting on the floor holding or feeding or changing our second son (born 15 months after our first son) and putting different coloured cars into different boxes while making happy noises. Our house was weird AF. 😂
We'd deliberately frustrate him at times which sounds cruel but was necessary. (Just as necessary as the physio I had to do on his nerve damaged arm - shoulder dystocia left him with erbs palsy. The physio was horrible for him but the arm the specialist at the bolsover street clinic in London said he would never use is the arm he uses to change gears when he's driving. The tricep the doctor said he'd never develop he uses when doing weights at stuff at the gym. 🤷).
Back to frustrating communication out of him - He'd grab my hand and throw it towards the cupboard where the cups and plates etc were kept.
When you're a parent you just know what they want, I can't explain it but I knew the difference between an "I want a drink" and an "I'm hungry" throw.
So he'd want a drink so throw my hand towards the cupboard. I'd pass him one of his plastic plates.
He'd throw it across the room. (Which is why we had plastic everything)
I'd make a big deal out of oh I'm sorry, I don't understand... Etc, ooooh you want a drink, sorry, here you go.... That sort of thing.
One day he yelled out "DINK!!!!"
We went on holiday and he wanted to try his dad's drink which he couldn't because it was alcohol. So we offered him my orange juice instead. He pushed it away and reached his arms out to his dad. We offered my drink again, he rejected it again.
So we swapped drinks sneakily (we thought) behind his back and his dad offered him 'his' (my) drink.
Our son yelled "DADDY DINK!!!"
I was sorely tempted to let him have it I was that happy he'd made a two word sentence 😂😂
I'd put him in situations he didn't like. For example there were a couple of ways to go to the shop. He preferred one way so I'd go the other way sometimes.
It was easier to always do everything his way but we felt that since he wasn't going to grow up in a world that would always do everything his way and always the same way, we would see if he could learn that change was something he could cope with. (Spoiler - It was)
He was so violent, hit, bit, kicked and once threw his head back and headbutted me so hard it broke my nose. That was my fault, I was restraining him in a hold from behind - my legs wrapped round his and my arms round in a bear hug pinning his arms but I hadn't tucked my head down to be touching his back and he threw his head back and smashed right onto my nose. I never forgot to tuck my head again, I tell you that!
As he began to use words, his aggression decreased. All behaviour is communication and once he had words his frustration eased over the years.
A big driver has always been our son's own desire to communicate and to not be treated differently. I remember in his first school his 1:1 (he had full time 1-1 from nursery all the way up to finishing secondary school) would take him through the office and bring him out to us at the end of the day. He decided this wasn't ok so he would break free and run back through into the school to reappear through the door all the other children went through to be collected. It mattered to him so it mattered and from then on he went through the door with everyone else.
That's been a constant throughout his life. He will struggle and he will refuse the 'easier' option because he'll be buggered if he'll be treated any differently to anyone else. His stubbornness has been his biggest strength in life.
When it came to driving he had to be assessed and the DVLA contacted his doctors and he was initially given a shorter licence but now has a standard length one.
He still struggles in many ways but rarely has a meltdown and is only aggressive in defence (if his also autistic brother attacks him). Sudden unexpected loud noise is his biggest trigger. His nemesis if you like.
I've changed and learned over the years and some things we did back then I wouldn't do, some things I'd do more of. Some things I didn't try then I'd try now.
I do know though that if we'd listened to them we'd have created a nappy wearing makaton using group home living non verbal adult and we'd never have known he could have been a driving, degree having chatterbox. Apparently he talks as though English is not his first language. I don't give a fuck if he talks like he's from mars 😁
We were just muddling through, trying out best, hoping that we were helping not harming.
I bet nobody got all the way through that! I hope I've answered the questions but if not, please ask.
This is just about my son. Every person is different. Just because all this led to these particular outcomes for my son doesn't mean it will for others or that other adults who are non verbal etc could have been any other way if their parents had spent five hours a day on the floor blowing bubbles instead
of four and a half! It's purely about my eldest son and his journey and his achievements.