Dylan has had a rather large & pretty upsetting regression recently.
He is finding anything outside of the security of his home a huge challenge.
Things Dylan used to really enjoy have become nearly impossible for him, and the hard thing is we have no idea what started this regression and what has made him so scared of being outside of the home.
Parks have always been a little bit of a struggle for Dylan, but he used to be able to last about 15 minutes before he would start showing signs of distress and the need to leave, and this was ok. We could generally distract him and get him to stay for about 20 minutes which then meant Amellia got a nice amount of time to play too, but now its as soon as you even go into the car park.
You pull into the car park and he can see the park and this is a park that he has been to many times before so it isn’t a new environment that is setting him off and he just starts screaming and lashing around in his car seat. When you then take him out and set him down he is inconsolable, and because he doesn’t have any understanding to what you are saying to him it feels like an impossible task to help him understand that the park is fun, safe and you can enjoy it.
I can understand how this must sound crazy to most parents, I mean a child not enjoying a park it even seems crazy too me, how can my child not enjoy the park?
I have to teach my child that the park is a fun and safe place, that i itsn’t somewhere to be feared.
What makes it really hard for me to understand and to see is that if you walk to a park when he is in his pram he is trying to clamber out of his pram as is desperate to get out and play but as soon as his feet touch the ground when you get him out he just crumbles and cannot handle it.
Somewhere else that Dylan used to really enjoy going to is a little Mums & Tots that I go to that is just for children with additional needs. He used to love it, would run in most times sometimes he would have a little fuss but then would head straight to the ball pool and would spend the time happily pottering about doing whatever he fancied.
As of recent this is not the case at all. As soon as you pull into the car park he is screaming in the car and is not happy. I settle him down by letting him into the front of the car and he then pushes all the buttons and we head in.. as soon as the doors open he is straight on the floor screaming and giving off.. you would think I had taken him to a torture chamber and not a place he used to love.
Fortunately I don’t feel just as judged here as I would anywhere else. Many here understand and are very supportive, and I really think key to this all is making friends and chatting to people who are in the same situation as it really is an extremely hard one to understand unless you are in it too.
His favourite place to go used to be up to the horse where he loved getting involved with mucking out, making up the feed and just being around the horses, now he will just lay on the floor screaming and it is really horrible to watch, somewhere he used to really love and is so eager to get out of the car but as soon as he does something just stops him from being able to enjoy it.
I just wish he could tell me in some way what is going on, what is stopping him from enjoying these things and how to help because right now I feel pretty useless.
I thought we were getting somewhere with Dylan and his eating.
He had added pancakes and pork mince to his very short list of foods that he would actually eat happily and enjoy, though over the past few weeks slowly but surely foods what he will eat are being eliminated.
Rice Krispies are thankfully still being eaten for his breakfast unfortunately he eats his breakfast slower than a snail, but as long as he is eating something I am more than happy.
For lunch he used to enjoy some lightly buttered toast, but as of recent he just won’t eat it. I can leave it in front of him all day and he just wouldn’t touch it. I try to encourage him by taking a bite myself and making all the positives noises, I show it to him, everything… but he just won’t eat it anymore. Thankfully he will eat just plain dry bread sometimes, so his lunch has now been changed to dry bread when he will eat it.
Dinner, now this is where we are really struggling. He used to eat plain mince every dinner time and would really enjoy it, we then got able to add in pork mince and the occasional chips too! Now though… we are really struggling to get him to eat anything at all for his dinner. He has stopped eating his mince and will only eat a few chips.
For snacks there really isn’t a great deal either. He really enjoys spicy Doritos… odd choice yes but he does really enjoy them, quavers, mini caramel squares, fruit flakes… which we have been told not to give him anymore and to cut out of his diet as they are high in sugar, I thought I was being good giving him them as they are fruit but nope. Though I will not be cutting these out of his diet or making any effort to do so, I feel that at the moment trying to cut anything out of his diet would be a really stupid thing to do seeing as it is so minimal already. The squishy fruit pouches which we have also been told to cut out because of sugar but that also won’t be happening and then his most favourite snack and anyone that knows Dylan is sure to have seen him with one of these tightly held in his hand is a digestive biscuit! He would live off these if he could, we make sure that everywhere we go we have some with us as they really do help him settle sometimes, magic buiscuits!
We are really struggling with food at the moment and many people don’t understand how distressing this is. We often get told that well he isn’t wasting away so he is doing ok, and several things along those lines… I mean obviously he isn’t wasting away and if it ever gets to that stage we would have to seriously consider our options and do what was best for him and it is something that has crossed my mind recently with how quickly he is phasing out foods that he seemed to really enjoy.
To drink he really loves pure orange juice and thankfully doesn’t notice the supplement that we now put in it to make sure that he is getting all the vitamins that he needs, though again the dietician told us to try and water this down and phase it out because it is again high in sugar and we thought we were doing great with him drinking that and getting some fruit… doh!
We have an appointment with the dietician next week, and what I really want to gain from this is a repeat prescription for his supplements as I know that she won’t have any ideas for encouraging him to eat because last time she told us that it was up to the occupational therapist to offer advice as it is a sensory issue with Dylan. I am then hoping that I can then request an appointment just with the Occupational therapist as currently we only see her with the speech therapist so if we can see her more often hopefully we can get on the road to Dylan enjoying food as much as his sister does!
Do you have any tips, ideas or pointers?! Help!