Podcast Episode 25. When faced with a storm the key is to stay calm and get prepared for whatever it might bring. Sometimes dealing with the system and fighting for your child with additional needs is like sailing into a storm. This week Caroline, in part 2 of her interview, talks about her experiences of staying calm and getting prepared.
Caroline starts off by reminding us that parenting is already hard without having the extra challenges that having a child with additional needs brings. As Caroline says, as new parents we are often left to cope until a professional decides that they know better and suddenly we end up being sidelined. It is then that we need to stay calm even if our most natural responses might be anger or frustration. She explains her own experiences and how she learnt the key skill of not saying what she really thought.
Caroline advocates becoming an expert yourself to help you deal with the experts who are sometimes deciding your child’s future. Research is key, in her opinion, so you become aware of what options are out there, even what new thinking is happening that could change the direction of your child’s life. Some of the professionals you deal with will welcome your knowledge and input and see it as a way to make their job easier. Others, and they will be a minority, will not be so welcoming of your input but at the very least they will be aware that you are ready and willing to equip yourself with whatever is needed to get the best for your child.
We finish the interview by coming back to Caroline’s son James and what his future might hold. Caroline shares his thoughts on future careers and as she says some might need a little more thought and others will rely on some technological advances. But the world is changing, and with that more options open up that we could never have imagined.
Caroline’s experiences of her journey with her son are unique to her and her family but there will be similarities with your journey in there. Sharing our unique stories helps everyone because even if the road taken is different our destinations are all the same – our children maximizing their own unique talents.
[2.30] – Parenting is hard but even more difficult is your child has additional needs
[3.05] – You are the expert on your child until it starts to cost money then you’re not
[3.45] – Maintaining the persona of the reasonable parent
[4.10] – What you can and can’t say
[5.00] – Be proactive
[5.30] – Wait until later to be angry and frustrated
[6.20] – Educate yourself so you know what is available to help your child
[7.50] – Be that positive parent at all times
[8.30] – The career options James is considering – astronaut/lego designer/professional gamer
[11.00] – The future always has more questions than answers
Show Full Transcript
Stay calm even if it the hardest choice
Become the expert on what options are out there for your child
DEBRA: Welcome to this week’s episode of the Journey Skills podcast. This week we continue to chat with Caroline. Last week, we talked about senses and Caroline gave us what I thought was an easy to understand summary of Auditory Processing Disorder and Sensory Processing Disorder. More importantly, she talked about the impact both of these can have and how they are often underdiagnosed. As I said last week, it gave me some food for thought when it came to certain situations with my daughter.
This week, she offers us her thoughts on navigating the system which often seems to be designed to make our lives more difficult, not easier. As she says, being a parent is difficult enough, let alone throwing in the extra challenges having a child with additional need brings. I have to say from my own view point much of what she said reminded me of our battles where one minute you’re the expert and the next you have little say in what the future of your child might be. It shouldn’t be a battle but let’s be honest, it often is.
Of course, there are plenty of great professionals who have the best interest of your child at the forefront of everything they do, but it only needs to be that one person who doesn’t believe in the future of your child to make it feel like the world is against you. As Caroline reminds us the key is people management, staying calm and not always saying what you really think.
I’m not sure how often you’ve wanted to scream, shout and probably use words you shouldn’t but ‘don’t’ seems to be the tip Caroline is giving us. Not easy, I’m sure we can all agree. Caroline also talks about the need to be proactive and do the research so you become an expert on what is possible for your child. This is something I agree with quite strongly because you know that you are your child’s best advocate and sometimes it will only be you who really believes, actually knows, that your child is capable of so much more.
We finished this week’s interview by hearing a bit more about what future career options James is considering. Like most teenages, his plans are varied. And in some cases, needed more planning. This is a bit like our house, whether our girl’s option remains on the table.
DEBRA: What would be your top tips for other parents?
CAROLINE: Parenting is hard and parents get blamed for everything. And so you add on to any kind of boiling pot of parenting with all the different advice and bits you get. And the situation of additional needs and really where is your capacity to go and push? And bearing in mind, when you bring your baby home from hospital, there will be a professional at some point who turns to you with a very sweet smile and say, You know what, ask the parent. You are the expert on your child. And again, That’s lovely, thank you! What am I doing? They say to you, You know your child best so therefore we need to listen to you about your child. But the minute your child has an issue that requires these professionals to dip into budgets to actually stop funding support for them or therapy, suddenly you don’t have an opinion. Suddenly, you can’t know what you’re talking about. So the only way as a parent, you can influence what’s going to happen to your child is by maintaining a persona and boy, it is hard. Being you’re sleep-deprived, you’re broke, you’re worried, you’re stressed.
You have to maintain a persona of being reasonable, involved. As intelligent as you can manage which also there are days and you have to be able to hold professionals to account while keeping them on sight. And that is not taught in any school. And it involves asking questions rather than saying Look, I’m really sorry, you’re an idiot. This is how it needs to happen. You can’t say that because you’re not a professional. What you have to say is I’ve noticed this, how do you think this needs to be investigated/handled/dealt with?And through asking questions and allowing professionals that respects by actually acknowledging their skill base you need to pull out what is best for your child. This has worked everywhere else so we’re going to use this. Because that’s way too easy. You need to actually say, Well, we’ll try it. Let’s test the measure. Let’s try it so how long will it work before you see results? What results are you expecting to see?
And see if they’re right. And if they’re wrong, don’t wait for your next appointment which can be 6 months or a year later. Come back and say email them. Always maintain that polite contact. If you walk out of that meeting and going to kick the tires of your car and go to the beach and throw stones in the sea and basically, go home and do whatever it is that you need to scream, shout, work out that frustration and anger. Do it. But for goodness’ sakes, don’t do it in a meeting. Don’t do it anywhere near the professionals because it doesn’t help.
In fact, I actively think it hinders. And I’ve seen that from both sides. I’ll be honest, as a parent, I used to spend as a school governor and saw how the staff were reacting to parents who were coming in very stressed (they had children with additional needs in the school) and they will come in very stressed because they’re child must be about to be excluded or they’re child was unhappy or really genuinely they had an argument. Their child’s needs weren’t being met.
But because the only person they could see that was the problem was the school, they were hitting up against the school and they create this rift between school and home which is then so difficult to breakdown and ultimately at the middle of all of this is a child who’s not having his needs met.
My advise to parents always used to be: You need to go and educate yourselves. I don’t mean that in a snappy way. I do mean this is in Go and read. Get the internet. Start Googling. Go find open days of other schools. Go find special needs schools. It may not be suitable for your child but go and see what they do there because I guarantee, embedded into every classroom of a special need school will be techniques and strategies that you won’t see in mainstream.
And if you go and say What is that? (You know, you see something on the wall that looks a bit odd) Ask them about it. They don’t expect you to know, you’re not a professional in this circumstance but go and say What is that? Okay, how was that useful? How does that work? Then you can come back and you can Google it, you can read up if you feel it’s relevant. But sometimes, knowing what’s out there enables you to walk in to those meetings a little bit more equipped with Okay, have we thought about this? Who would know if this would work for my child? Again, you then come across as a parent who’s engaged, who’s reasonable.
And no matter how much professional your professionals are, you have to stand there patient at the job, at the end of the day, they will go home, go home to their families and their lives, walking their front doors, cook their dinners, talk to their children and your child will not be on their head. I’m sorry but it just doesn’t happen, they have their own lives. So when they walk back to that school, all you’re going to be a parent that they sigh They’re coming in today or are you going to be that parent that like Okay… I’m interested in. Okay well this is worth exploring. It shouldn’t be like that. It should be every child has equal access but realistically our system is so broken, so underfunded that if you want the best for your child, you need to tick some boxes on demonstrating that you’re willing to meet them toe to toe and go: Okay, how are we going to make this happen?
And ultimately, I will say it will not be easy. Yes, it’s tough. But I would actually say to every parent: Go equip yourself with every knowledge and try so hard to keep people around your son on side. Your name doesn’t actually need up on a dartboard. It’s not actually the best place to be.
DEBRA: So future wise, does he have an idea of what he’d like to do?
CAROLINE: Well we’ve hit to a number of different things over years. I love watching children develop ideas of what they’re going to be. I’ve had to break the idea that he’ll ever scuba dive because unfortunately with his lungs following the CDH when he was born.
Scuba-diving isn’t really on the list. Similarly, astronaut. That was one of those really difficult conversations. I did want to pluck that one because I loved the idea of it but I just let that one generally ride along for a while. He loved the idea of working for Lego. Lego has a massive thing and he researched a lot for Lego but his idea of commuting to Dinmark everyday may need some work.
So actually planning his life is very entertaining because occasionally you do have to have some very gentle and we try to keep it quite humorous discussions about How is that going to work then?
At the moment, he has two ambitions and he’s not quite sure which of them were best. And I just said “You know what, why choose? Let’s see what happens.” One of them he wants to be professional gamer. I have discovered this is a career of that generation that perhaps we didn’t have as an option when we were younger. That involves having a Youtube Chanel and basically becoming a bit of an online personality. I’m not exactly sure how that turns into money. There is actually something out there that didn’t exist 10 years ago. Kind of holding that in reserve. He is very good at games. He beats the pants of everybody else in the house with every game I’ve come across so we’ll wait and see.
So, I’ll be honest, my concern for the future is always: What’s going to happen after school? The home’s is a very comfortable place for James and I can see that he would very easily slip into the ‘staying at home and not really doing anything’ life. Ultimately, I didn’t think that’s healthy, I don’t think it makes them happy and I don’t think it gives them a kind of purpose or ambition or life to kind of Hey I did that on a Friday night. I did that this week.
I’m not sure what the future holds for James. I really am not. As a parent, I’m sitting there looking at financial planning, I’m looking at what’s going to happen when we die, who’s going to look after him because I can see the journey is not done for James. I think he still continue to change and find new skills and perhaps learn to cope more and all this kind of stuff and that’s something I really am passionate about.
Every child with additional needs getting to that point where they can maximize their strengths. Let’s face it, that pressure comes, you know, the only way that’s going to be achieved is from the parents.
DEBRA: Caroline, thank you very much for your time.
CAROLINE: Thank you.
DEBRA: Key takeaways? Stay calm even if it’s the hardest thing imaginable. I wouldn’t be telling you anything you don’t already know if I said getting angry doesn’t actually help. Of course, that’s not to say you don’t go home and throw a few obviously soft objects around the house. Become the expert on what options are out there for your child. This helps your child but also age your relationships with those professionals you deal with. At best, they will welcome your input. At worst, they will be aware that you know what the options are and won’t be fobbed off very easily.
Thank you for listening to the JourneySkills Podcast. Please subscribe to this podcast and you can let me know what you think on our contact page. If you have a journey to share I would love to hear from you just email me firstname.lastname@example.org
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