Hi, my name is jdevine83! son is 6 and has CP. I am exhausted with his screaming for things

jdevine83

HEllo, my son is 6 and has CP. I am exhausted with his screaming for things like mammy to talk on the phone or to brush teeth. I know alot of ppl say look out for triggers, or they might be feeling frustrated. So what is it when my son has slept peacefully all night then wakes up screaming at me pulling his ear indicating phone. I mean I'm not even on my phone like others scrolling. He likes to listen to conversation I have with my friends but I can't be on the phone all the time and when he hears me say goodbye to them it starts. It's starts at random times, like as if he just remembered about the phone and starts again. I know rhe tooth brushing is sensory related but also can't do that everytime he asks either and it's turning into a prison my home as I dare not take him out in fear of the screaming starting. Everyone says don't give in, so what do I do. I've left him to scream and it got to nearly 2hr and he was still going strong. I talk calmly to him and he screams louder, I explain he screams. Do I leave him to scream till it stops or ??? This is every morning , everyday.

SaraC_Scope

Hi @jdevine83

Welcome to the community. It sounds like you are coping with a lot. I'm wondering if you have any support from family and friends.

Is your son still seeing specialists for his CP where you could raise your concerns around the behaviours you've mentioned today? This could be connected to his CP or something different. Alternatively I would suggest contacting your GP to discuss this situation. It's important to talk this through with a professional for your well being.

I'm guessing he attends school. Have the teaching staff seen this behaviour or is it just happening at home. It might be an idea to arrange a meeting with school. They could offer some additional support.

Please come back to the community to update us on the situation and reach out if you need anymore help and advice.

@SaraC_Scope

Albus_Scope

Hi @jdevine83 and welcome to the community.

That sounds like a very difficult and draining situation, I'm sorry. We have a great CP network here and the amazing @Richard_Scope who is a veritable font of knowledge. I'm hoping someone is able to offer you some advice soon.

Richard_Scope

Hi @jdevine83

The first thing that I want to say is you are doing a great job.

Roughly 25% of people with cerebral palsy have behavioural or emotional control issues. Temper tantrums are completely normal in children with and without cerebral palsy. The cause of a temper tantrum may not even have anything to do with CP and instead, could be age-related and developmentally appropriate. 

Cerebral palsy is caused by damage to the developing brain and results in motor impairments. Therefore, it is not directly related to the emotional regulation difficulties that cause temper tantrums. 

However, the motor impairments that cerebral palsy does cause can cause children to feel frustrated and lead to temper tantrums. 

For example, oral motor impairments can make it difficult for children with CP to talk, or spasticity in the leg can make it challenging for children to run quickly during play. Similarly, associated conditions of cerebral palsy such as chronic pain, poor quality sleep and learning difficulties may contribute to temper tantrums. 

Children with cerebral palsy can usually tell when they’re not understanding or doing things as quickly or as easily as those around them. As a result, they may act out because they feel different, misunderstood, and unaccepted. 

Here are some suggestions on how to manage your son's outbursts:

1. Avoid Giving In 

When your child throws a temper tantrum over not getting what they want, the worst thing to do is give in. 

Giving in only reinforces the idea that the child can get what they want by acting out. While it may quiet them down, you’re not fixing the underlying problem. 

2. Behavioural Therapy 

Children who continue to act out as they get older are often not developing the social skills necessary to effectively communicate their feelings and emotions. 

Consider taking your child to a behavioural therapist to further work on developing social skills like: 

• Problem-solving 
• Controlling impulses 
• Negotiating 
• Social expectations 
• Delayed gratification 

Behavioural therapy will teach your child that there are better ways to cope with frustration than having a temper tantrum. 

3. Time-Outs 

Sometimes, you just need to take your child away from the situation causing the temper tantrum. 

Generally, children have short attention spans and will quickly get over what they were overreacting to if you take them out of the situation. 

Calmly explain to your child why they are in a time-out and allow for an appropriate amount of quiet, alone time. Generally, the length of the time-out should be about one minute long per each year of age. With this guideline, a five-year-old would have about five minutes in time-out, while a three-year-old’s time-out would be about three minutes long. This will give them time to cool off and reflect on their own before returning to their activity. 

4. Be Positive 

Diverting your child’s attention away from what they can’t do and encouraging them to do things that they’re good at will help relieve frustration and boost confidence. 

Acknowledge and praise your child for positive behaviour. This will help them distinguish the difference between good and bad behaviours. 

5. Encourage Emotional Self-Regulation 

Teaching children to find positive ways to deal with their emotions allows them to self-regulate. Emotional self-regulation is the ability to “check in” with yourself and use strategies to ensure your emotions and behavioural reactions are appropriate for the situation. 

This is ideal for older children, but even younger children can learn to better regulate their emotions with adult guidance. 

If your child feels as though they are getting close to having a temper tantrum, having some solid strategies to manage their emotions is essential. 

Self-regulation strategies can include: 

• Deep breathing with counting: Count as you take 5 deep breaths, breathing in through the nose like smelling flowers, exhaling out through the mouth like blowing out candles 
• Self-hugging: Giving yourself a hug (or squeezing a pillow) provides deep pressure, calming the sensory systems and often emotions as well 
• Take a break: Go to somewhere different and do a relaxing activity (colouring, listening to music, etc.) 

I hope that some of this will be helpful.

jdevine83

Thank you so much for your messages of support. He does not display this behaviour in school as I have talked about it but they don't offer much advice on dealing with it. The GP says its a side effect from taking keppra an epilepsy medicine but he's not actually been diagnosed with epilepsy, he's had one seizure and they prescribed him this to take twice a day and his temper is really bad. They have sent him for a eeg but im still waiting for results still waiting to see if I can ween him from the medication, everything takes so long. I've seemed help from the family first team as I unfortunately don't have parents of my own or siblings just my two older children and a few friends with busy lives so yes I'm doing this alone everyday and everynight. I love him dearly I'm just exhausted with what to do.

Rachel_Scope

Hi @jdevine83. I hope the results from the EEG come back soon. It seems it would be helpful if your son could come off that medication. I'm so sorry you're having to deal with this alone. Are you able to make any time for yourself where you can do something nice, such as when he's in bed? It's important to take time to look after yourself too, although I know it may seem hard.

jdevine83

THank you, this really helps alot. Istarted yoga and long walks when he started school and helps loads. Holidays and weekends get hard. The 6hrs freddie is at school I try and make sure I have everything sorted and shopping in as I don't drive so weekends can get bad if I can't make it to the shops, my older children help when they can. My son works full time and my daughter is at uni in York. Its the relentless chasing things up and feeling like no one is actually listening to how hard broken sleep is when its every night. I don't even know where I find the strength from some days especially when I don't wanna leave the house but I have to as no choice. I take my hat off to anyone raising a child with complex needs. I am also glad I got to experience motherhood without the complex needs with my older two. That's helped me today otherwise I think I'd judge myself more not having the experience. Can't thank u all enough for the kind comments and the time you've taken to write it. Thank you

SaraC_Scope

Hi @jdevine83

Thanks for updating us on Freddie taking Keppra for a seizure he experienced. I am aware that Keppra comes with side effects. I myself was prescribed it for my epilepsy and was warned of a side effect referred to as "Keppra rage." Which I did experience. Definitely talk to specialists about this, after you receive the results of the EEG.

Have you explored you Local Offer to see if there are any groups you could connect with whilst Freddie is in school. This might be a place to build a friendship. Or once you've done your errands on one day, use the following day to catch up on sleep.

Please remember you are not alone. Scope have the CP Network that meet once a month, where you can connect with others living with CP. Action CP also have lots of resources and information to support parents. I've also included the link to a Facebook page Cerebral Palsy UK that links up families in the UK.

Take care

Sara