Huggies Forum

some days are diamonds, some days are stones Rss

Hi

I have a DS (3.5) and we are nearing the end of a lonnng assessment which included paeds, speechies, OT and physio. Some of them think it's GDD, some think it's ADD, some think it's not neurological, but physical (low muscle tone top half of his body). The paed report says GDD with some dysmorphic features. Wow. I have learnt so many new terms this year, that I am thinking of becoming a paed grin The case management meeting is in 2 weeks, so I am hoping that they have got it together enough to give me an idea of WHAT I CAN DO FOR HIM. That's all I want to know. The behaviours are the worst. He is very delayed with his speech, and gets frustrated when he's not being understood.

Today was a bad day. DS managed to get out of his room in the very wee hours of this morning and destroyed the house. But in 'quiet as a mouse' destruction mode. There was food smeared everywhere where he had been doing 'experiments' and he had found his fathers packed lunch and his kindy packed lunch in the fridge and had a lovely brekkie. He followed this with milk, juice and a bottle of cola. Oh, and some mayonnaise. He put himself back in his room, and when I went in this morning, I was greeted with a child with mayo in his hair, vegemite smeared over his face, and bits of porridge all over his jammie top and sheets. He held out the bag of crisps he was holding, and offered me some, along with a very big grin. I was actually too afraid for 2 minutes, to leave his room.

I put him straight in the shower, made a new lunch for him and took him straight to kindy. I am now feeling guilty because I hardly spoke to him, as I was so angry. He also didn't try to cling to me when I left or say goodbye, so I think he knew that 'something was wrong with Mummy'. I have now regrouped and regathered, but still feel frustrated.
thanks for the great site info. I'm beginning to think that it is going to be a round-about. I am trying to do a lot of different therapies at home with DS. Actually, a HUGE milestone for us, as a family, was being able to take DS shopping at Woolies - letting us hold his hand. It took nearly 1 hour to get milk and bread, but, hey, progress is progress grin I also hate that feeling of everyone staring at us when DS has several 'moments' out in public. He ran into a bakery the other day and out the back into their baking section. I chased him and pulled him out from behind a big oven and he did the "rigid body - i ain't going nowhere" and did a crablike pose on his back so that I couldn't pick him up. All the while screaming. All the staff were just staring at us and I couldn't do anything but apologise profusely whilst trying to extract my crab child from their floor.

wow, mum of 3 - that is some excellent advice about the charts with the daily activities!! he actually asks me in one word thingys what we are doing that day like 'walk?', 'swim?', 'kindy?', 'car?'. so in his own way he is asking to know whats happening. we are heavily structured and have been since he was a bub. one specialist recommended it and it has worked wonders. naptime is no surprise and neither is bedtime. i'm not sure why he has never revolted against these 2 things yet....but i don't want to jinx myself! we went to a family bbq yesterday and his father and i placed ourselves at either end of the backyard and played tag team for an hour (trying to catch him from running off, touching things he shouldn't like the bbq, grabbing everything) lol. we both agreed last night that we missed being able to go out and actually sit for more than 30 seconds and talk to other adults.

your little one sounds so intuitive! i know it would be hard with the anxiety and the panic, but you get through it, hey? do you have anyone besides your partner to support you when you need those 'breaks' smile i would love to email and get some more ideas from you. the weirdest thing happened yesterday - i actually watched my DS properly for the first time and saw what others were seeing. I have managed to convince myself for the past 3 years that he was just spirited, and marched to the beat of his own drum and was just a very, very, very active little boy. however, yesterday i noticed that he couldn't switch himself off. he went from one task to another (all up - 43 tasks) in the space of 3 minutes. i realised how hard it is for him as his little mind and body is racing at 300km/hr. so, i did the big hug thing and held him for 30 seconds and he started to come back to earth. now i am starting to put it into perspective and just want ways to help him...
hi hippomum

yeah, i hear ya! grin i guess that it goes to show that we are all different and that a lot of us do live outside the box. which is great. i had this discussion with my sons daycare the other day and i spoke about the strengths based stuff with them and said 'well, instead of focusing on what he can't do - let's focus on what he can do'. so now there is more stuff incorporated into his daycare days that he loves like painting, making mud pies (i know, old clothes on that day!), dancing, singing and running. i am waiting to go to a case meeting this week with all my DSs specialists and to work out if he is eligible for and early development centre. they will be better equipped to support him and have all the sensory modulation stuff.

i actually stopped the other day when we were shopping at Woolies and a lot of people tend to smile more and laugh when my DS starts singing at the top off his lungs when we line up in the queue or yells out 'hello lady, how you' to some lady at the deli counter. For all his 'moments' when he decides to tell everyone in the bakery section that 'i need to wee wee' (loudly) or throw a grape he's pinched from the fruit section at some poor guy, i have to embrace him for all his 'quirks' and - get the hell out of there as fast as possible!
Hi smile I have a son with autism. Many of the strategies used for ASD kids would probably work quite well if your son likes the structure. A visual schedule for each day would be a great start. It can be as simple or as complex as you like ie include all the steps of breakfast, get dressed etc or simply list the day's activities eg kinder, park, grocery shopping. The program that I'm familiar with for producing visuals is Boardmaker, but you can just as easily use photographs. It's much easier for the little ones to cope if they can predict what's coming. An idea for the grocery shopping that may help you is to give him a 'list' - 2 or 3 items in pictures, cut from a catalogue or whatever, that he needs to find to put in the trolley. It gives him something to concentrate on, other than how much he wants to escape grin, and also gives you something concrete to praise him for ie rather than saying 'good boy for not running away' (which may just plant the idea in his head lol), you can say 'you're such a good helper, I'm so proud of you'.

How is his receptive language? Often a child with delays in expressive language ie talking will also have receptive ie understanding delays also. If he is delayed in his receptive language, using too many words will confuse him and lead to further poor behaviours. Try to use sentences or phrases only a couple of words longer than his, so if he uses single words, try to use only 2 or 3 words at a time. If you have a speechie on board, it may help to look into alternate communications such as Makaton, PECS, Proloquo2Go.

Your son should have delays in enough areas to qualify for early intervention. Get him on some waiting lists, it will help him as well as you.

It's great that you are able to see things from his perspective a little now, although it is heartbreaking the first time you see what others see sad Just remember that you get to see the gorgeous little man that is your son, not just his delays and deficits. Deep pressure can be very calming - so a big hug can work wonders (for both of you). Do you have an OT? It may be worth your while looking at a weighted lap bag or similar to help him to sit still and focus.

Don't feel too bad if you get frustrated or angry. We all do. It's part of the process. It gets better.
Also, I don't know where is Australia you are, but I know that in Vic there is a program that allocates funding for additional assistance in childcare or kinder. My DS never went to childcare, but he had funding for an aide in kinder and it made a tremendous difference.
hi angelkisses. the speechie and OT will be a regular weekly appointment after the case meeting on the 8th grin i love the grocery list for DS, that is a great idea and i can see that working quite well. DSs receptive skills are average. i do have to remind people to use just a couple of words when asking him to do something. i took him to the eye doctor to have his eyes checked the other day (he had a squint and had an operation to correct this), and the doctor started speaking to DS as if she was speaking to an adult. She was holding up cards that had pictures of things like harry potter and saying things like "tell me the name of the movie this character is in" and 'can you point to the wand?". i told her that he was delayed in speech and that she would have to reallly simplify it. So, she held up pictures of numbers and said "can you point to the 8". &*(^$@^&*^ lol. sometimes the public system is good, sometimes its blahhh. yeah, i also want to learn more about deep pressure. The OT mentioned it the other day as a tactic to use. The daycare also received funding to get a 1 on 1 worker for DS, and she is amazing. DS loves her. I am also at Uni full-time and receive JET and this has made a huuuge difference financially! DSs physio also pointed out some jumping exercises to start teaching him how to concentrate. I can't wait to go back to the physio and OT and speechie to get some more support and get this show on the road!
wow mum of 3 - the stuff in those catalogues are AMAZING grin i want to play with that stuff!
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