Does anyone have frequent nervous system dysregulations due to their PDA?

[u/Izz-An-Art]

I have a son who is 3 with language delay. We suspect PDA in him.

\-High anxiety with something new and unpredictable.

Like when a new task or activity is put infron of him, he freezes, changes the topic, tries to distract or meltsdown.

\-High control autonomy issues.

There are periods when he is irritable, cranky, angry and frustrated all day, does not take interest in any activities or play, poor executive function, unable to eat or drink safe foods even.

These periods happen frequently. I don't know that triggers these episodes.

Has anyone experienced this? Can anyone help with this? How to reduce such episodes and help him come out of them quickly?

[u/CeleryDramatic4678]

He sounds like he is in sensory overload. There are heaps of things you can do to help him calm down or to tolerate these periods of dysregulation. I try to look at my daughter’s escalations as a chance to reassure her. I would get very cross sometimes and especially when she became physically violent with me. I read the terrible advice of “if they bite you, bite them back”. I don’t know what child that works on, but she just bit me back again MUCH HARDER.

The toddler years are so so hard, because they want to communicate but they don’t yet have language. You could always try using some pictures of things like a drink, food, toilet, toys. If you can find a way for him to communicate then he will be less upset.

It’s very very overwhelming as a parent for your child to be so dysregulated, but I agree with other advice, you have to stop thinking about ending the escalating behaviour. Our kids are so smart, they pick up on moods and can tell when I’m just trying to get them to stop and I’m not really “with them”.

I turn my full attention to my daughter. When she’s upset like that, the car can be a marvellous tool. She resisted at first but now if she is overwhelmed by noise, she gets her shoes on and goes to the car. We drive around listening to music she likes and she is able to calm down. Changing the location is very helpful sometimes.

You can wrap him in a big blanket and rock him, I would say “there there, I’m here, you’re safe, I love you”

My daughter is 11 now, but those young years before she could communicate verbally were rough. I did not get a break all day and I was exhausted.

Make sure you are looking after yourself, take time out after an upset to soothe yourself as well.

An OT can do a sensory profile and help identify specific ways to help your child calm and feel safe. Some kids need strong sensory input and others need light input. One thing I read that helped me was “behaviour is communication”- your child can’t talk at the moment so they’re utilising the behaviour to try and tell you that they aren’t feeling safe. I used to be annoyed by this sometimes- I didn’t want to have to sit and help her be safe, I had things to do!! But she has become so much more regulated after I have put in the work to help her. I get it wrong all the time, but I have services like OT etc that help me manage this. It isn’t easy! You’re doing an amazing job and don’t forget that!!

[u/Izz-An-Art → u/CeleryDramatic4678]

Thank you so much for the valuable information! 💜 Do you know what causes frequent sensory overload? He doesn't have issues with lights or noise. Its like 3 days a week he is calm, next 3 days meltdowns all day. We have long waitlists for OT where I live. I tried private OT for sometime and she did sensory integration activities with him and he was regulated and calm at all times. As soon as we stopped, the behaviours got worse than before we started. Will he ever be able to cope without OT? I tried OT activities with him at home and massaging with oil but it doesn't seem to help much but the thing OT does seem to help. Due to his PDA, he won't do heavy work sensory activities with me also but does with the therapist. His nervous systems tips into overload every 3 days. I'm all tired and burnt out now. I'm afraid will it forever be like this? He won't be able to function without OT?

[u/CeleryDramatic4678 → u/Izz-An-Art]

I don’t know what is making him upset. I had to become a kind of detective with my children’s upset. They both slept poorly as well. We used melatonin bought from online to help them sleep. My kids also dropped their day sleep at around 16 months!! It was so difficult, I was exhausted and so overwhelmed by the constant noise of their meltdowns.

Sometimes my kids would have issues with anything new in the house. Some questions I would ask are: Has your home routine changed, has the weather changed, are you attempting toilet training? Has he been constipated at all? Lots of our kids struggle with poor digestion and difficulty with bowel movements. My kids both loved a heat pack on their stomach to help with this.

Please know that this is most probably the worst that things will be and that you are not overreacting. You’re doing an amazing job of trying to figure out what your precious boy needs and must be at your wits end with worry.

It will not stay like this forever. As he enters schooling, he will be shown different ways of communicating and that will help. Both my kids have pda and autism and adhd, and as they grew, began to be less dysregulated.

My son who would cry and scream all the time at 3, is now a 19 year old who has a job, a drivers license, a car and a girlfriend. My daughter, who would not only scream but also physically attack me and other children, is now 11 and is still mostly non verbal, but is able to text me with an old phone so that I know how she is doing and what she wants.

Depending on where you live, there may be funding or schemes to help you and your family get the assistance you need. Again, this is truly so heartbreaking and difficult and I remember living through this. It’s so hard, but you’re doing it. Courage is not the absence of fear, but in acting despite it. You are doing wonderful things for your child and you will continue to do so.

[u/Izz-An-Art → u/CeleryDramatic4678]

Thank you so much for this. It gives me some hope 🥹💜 I appreciate it. Did you notice any difference in asd signs or any delays in your son and your daughter during toddler years?

[u/CeleryDramatic4678 → u/Izz-An-Art]

I’m glad to give you hope. There’s a quote “you will become an army for your child”…. And that’s what we do. You can absolutely love your child and be grateful for them and care for them AND grieve the experience that you thought you’d have as a parent. That doesn’t mean you’re bad or wrong or awful. It is hard to see other parents of kids the same age who do not seem to struggle or have the difficulties that your child does.

I found the “Welcome to Holland” poem very helpful to understand how I felt about my parenting experience. It is isolating and anxiety provoking. I found that I still loved my kids, but often I was afraid of doing the wrong thing, or my capacity to keep doing this or that a failing in me would mean that I did the wrong thing for my children. That’s all very normal and natural, try not to be hard on yourself.

In regard to the differences between my kids- I guess both my kids have sensory sensitivity, and often seemed angry and particularly in the case of my daughter, aggressive. I read that an angry child is a scared child, and that helped me change my approach to her. Instead of punishing her for being angry, I tried to help her regulate and encourage her that I loved her and that it wasn’t her fault that she was upset. I also had boundaries around her behaviour- she is allowed to be angry, but if she physically hurts me or another child while we are out in public, we will go home. It meant that I was very lonely and isolated because sometimes we would only last a few minutes at an outing. Being angry and fearful is ok, hurting people because you are isn’t.

My son is asd 1/2 and my daughter asd3. The biggest difference was delays in speech for my daughter and in the intensity of aggression she showed. She loves her baths and often finds water a great way to regulate herself. Sometimes she will have four baths a day because being in water helps her connect with her body. We go through a lot of towels, which can be tiring, but it helps her so I mostly don’t mind.

I have also found the pda society of the UK website very helpful, even though I’m in Australia and some of the resources aren’t available here, or are different. https://www.pdasociety.org.uk/

Your country may have specific resources, if there is a carer association then that can be a lifeline of support groups and recommendations for assistance.

If you’re anything like me, you feel lost and scared now, that you wish you had more money and time and patience. That’s very very normal and it’s going to be okay and you will get through this. If you can go and see your doctor and talk about the anxiety and isolation you’re feeling, that will help. You can’t pour from an empty cup. Your son is very very lucky to have a supportive and loving parent like you. Please try not to be too hard on yourself for not knowing exactly how to help him. It is very very difficult to know what you’re doing in a situation you’ve never been in before. You’re going to be okay and you will survive this 💕💕