It’s just so hard.

[Iwantadream]

Long time follower of threads and the advice I have read over the years has helped so much. But it’s just so hard and I am having a bad night. We have an adopted boy been with us 8 years and he is currently 9.5. We knew limited information about the family history.
He is loving, kind and most importantly our little man but he still can’t talk properly, has a one to one in school, still soils himself.
It’s never been easy with him. We pay for private school, top up the LA one to one to ensure they are full time, private speech and language therapists every weekend, we have EHCPs - yearly reviews. He struggles to make friends, we have lost our own friends it’s just a daily struggle and I have really had enough. We will both get up tomorrow and we will both carry on but I see it in my partners eyes how tired they are and how much it’s taken out of our own relationship. It’s just so hard bringing up someone with so many difficulties. I don’t know why I am posting i just feeling it tonight.

That sounds very difficult. Have you contacted your post-adoption support team and asked for support for yourself and your partner? The adoption support fund funds therapy for parents (called therapeutic parenting training), which can be very helpful.
You can also ask for a parent carer needs assessment from your local authority. I just found this on my LA's website: "Parents and carers have a stand-alone right to assessments and services under the Children and Families Act 2014. This is called a Parent Carer Needs Assessment (PCNA)."
You are clearly doing a brilliant job! It is just so difficult to find the time for self- and relationship care. I hope you can get better support.

Brilliant post. My dd has therapy through the adoption support fund and I also access it and it is really helpful. Just want to add op are you accessing DLA entitlements for your son and carers allowance of you don’t work etc. I totally hear you about the loss of relationship, the impact on our relationship and friendships that can’t survive as they have no way of understanding what life is like. The only ones who get it are other adopters. The daily grind, the endless daily grind. The life restrictions. I get it. My advice is self care, self care and more self care, get rid of stuff in your life ruthlessly that obligates you to anything other than immediate family, don’t volunteer, don’t work, work for yourself and your family that needs all your energy.

Thank you for both of your replies. We are fortunate to have are own business which is very successful so funding we don’t need. Everything is just so hard. The soiling I find most difficult as he will just sit in it oblivious without a care. We have an EAP which we provide for our own workforce and we can access the counselling available if we need and maybe we should do this. Our relationship with the LA stopped around 3 years ago as he now has three brothers all direct siblings and each time they called to ask if we would take them, it’s so hard to say no each time but we are not strong enough to take another child.

what set me off today is we had an appointment in Manchester as we have been convinced he had NF1 and the genetic testing results have come back as negative. The consultant just looked as us both and you could see in her eyes how sorry she was for us as we have no diagnosis on why he is like this. It’s difficult to explain it’s like his swimming I knew he couldn’t manage a group class and I was worried he would have accidents in the pool so I self taught him and then found an amazing one to one teacher but to do this had to pay for lessons at a golf club it’s cost £1000s but he can now swim but we are talking 4 years of twice weekly one to one lessons to get the basics

@Iwantadream You sound so tired. There is so much sadness in your post. It sounds like you are grieving for the family life you thought you would have when you adopted. You’ve lost friends and your days are consumed with anxiety for your son’s present and future. It sounds like working it through with the right counsellor who gets it might help you understand your feelings about where you are at now and the future.

on a side note, have you spoken to gp about depression? It might be worth looking into why you feel so low and if there is more support.

your son has done amazing to learn to swim despite his difficulties and what an amazing family for giving him that opportunity.

what stood out for me was the speech and language therapy. Is it working? If not, what alternatives have been tried? Have you sought occupational therapy instead?

it sounds like you’ve lost the fun times. What do you do as a family to have fun? I understand that trips to the zoo or cinema might not be suitable for your son but what about things to do at home? Painting? Baking together? Try and fit a fun activity in that you can do together each day. Reclaim your weekends for family time and pause speech therapy if it isn’t helping or reschedule to later in the evening. You all sound exhausted and weekends should be about rest and reconnecting after a busy week. Just a few ideas.

hope you feel a bit brighter today.

I’m so sorry OP, this sounds incredibly difficult. There have been some good suggestions so far but I’m wondering about a different kind of support for you in terms of your own friends and family. Do you know any other adopters? Having people who just ‘get it’ really makes a difference I think.

Sending hugs it all sounds incredibly difficult. Very good advice has already been given. But I would think about the following:

1. EHCP - this should have SaLT and OT provision included so you shouldn't be paying privately for it . Same with school fees. I hear what you say about you not needing funding but his EHCP needs to accurately reflect his needs so that you get him into the right school especially for senior school.

1. You really need respite - so you could look at maybe having a carer with whom he can go and stay for the odd weekend giving the rest of the family a break. Or indeed look at a residential school where he comes home either at the weekend or for school holidays.

1. Re soiling - I think getting to the bottom of this will be helpful for you all and him. Is it a sensory or attachment/trauma response were he is disassociating? Has he been assessed for sensory processing disorder or any other type of disorder?

Are there any family members who could give you some respite? Regular respite will definitely help you and your husband deal with all this.

Best wishes xxx

You sound exhausted, and no wonder.

I agree re the ECHP, it should include all the therapies your child needs including specialist school provision where needed. I know how it is when you can fund this for yourself, it feels easier and quicker to just sort it out. The problem is though that the supports aren’t joined up in the way they would be if coordinated through an ECHP. I’d also echo thinking about senior school placement - the right specialist placement will be life changing for your child, and will help with some of the issues around having support eg other parents whose children have complex needs who will get where you’re coming from in a way your pre-child friends probably won’t.

Is the private SALT making a difference? They should be able to clearly explain what they’re working on and expected progress, what are your hopes for the therapy?

Do you have any understanding of why his development is so limited? What assessments have been done to establish what’s going on with him? The reason I ask is because many of my DDs difficulties were put down to trauma (and there’s lots of trauma to deal with) but there were also physical issues that caused problems with toileting, speech, language development and learning. When those were finally dealt with (after much argument with health professionals), things got much easier. While she’ll always have difficulties things like her being able to toilet independently make a massive difference.

I think too adjusting your sense of his capacity will help, he sounds developmentally delayed, so things are going to take longer and look different for him. It sounds like you weren’t aware that he’d have such challenges and life isn’t how you thought it would be - which is very hard indeed. Celebrate the things he is able to do, take pleasure where you can and make sure you both get time for yourselves, from a coffee in the garden to a weekend away with friends so you can glimpse the person you are without the challenges you’re coping with now.

Id also access counselling, I sliding usually suggest EAP counselling though - that’s helpful for short term, solution focussed support, you need something more relational someone who will hear how hard it is, and help you mourn for your old life and the child you hoped for.

I’m so sorry, OP. We’ve had toileting issues here and anything with poo involved is just so depressing and wearing. You’ve had lots of good advice so I’m just offering a handhold.

Although, on the poo, has he been checked for constipation? It can lead to blockage in the bowel which can cause a type of leaking called overflow. Kids don’t really feel it happening.

I see you’ve said you have no diagnosis, that’s where I’d be starting. Ask your GP to refer to CAMHS and ask the school to refer to Ed Psych, it’s important to understand what’s underlying his difficulties because different therapies and supports are more effective when targeted to particular underlying causes.

In Scotland we have community paediatrics who assess and coordinate different specialties needed which has been an absolute godsend with my DD who at one point had 7 different specialisms involved in her care. See if there’s a similar service in your area. At the moment you’re trying to address symptoms (poor speech, toiletting etc) but once you find what’s underlying it all you’ll be able to piece together the right supports.

This is one of those times where, hard as it is, going through your local authority and NHS will help simply because they’re more used to seeing many children with complex needs and have treatment pathways. Private clinicians simply don’t see enough complex cases and they don’t have the wide expertise that is available to multi-disciplinary teams which are common in the NHS/local authority. You’ll need to argue your case because resources are scarce but you’ll have a more coordinated/comprehensive assessment of need to work from.

Sorry for not replying since my first messages. Between work life and are son we don’t have much spare time. We are going to look into some of the great advice given and see where we can help. Thankfully me and my partner are both invested fully in our little man and we are working through the challenges day by day, it’s right to say it wasn’t what we expected and we where both naive going into this but we have learnt as we have gone along and love our family unit, I didn’t mention that we do have a nanny also which helps but her hours are for looking after the house and collecting him from school only until one of us returns from work. I think we also need to have a talk about our business as we both run separate companies and that alone leaves us tired before we even come home to our family routine but it also benefits us in that we can take time off whenever we need for holidays and appointments and family days. The comment regarding poo I hate the stuff! I really do and I wish I could buy shares in the underwear for sale in tescos! We buy a new multipack most weeks and have given up cleaning them it’s just easier to throw them away! I guess part of me wishes I could go back in time and tell me not to go through adoption training and have are old life back, but the other half is so glad he ended up with us and we can give him the time and resources to help him develop, keep him feel loved and I know most importantly he is safe with us.

We have a senior school in mind for him as he has 2.5 years left at his current one. We will be visiting it at the next set of open days, it’s private again with small class numbers and his current one to one will be able to continue with him which is very important. We just hope the school will accept him. Focus is currently on toileting and clearing up the speech to help him develop and make his school life so much more fun for him. He is supposed to have a residential soon and he wants to go, I know we won’t be able to let him go alone but I am thinking we can do it if we take time away from work and stay in a hotel around the corner so we can assist during the evenings or as needed, I just don’t want anything distracting from the other children. I don’t think some of the parents understand how hard it is and you do get a negative feeling on the school event days that they would prefer our child was not in the class. What we do know though is he smiles every day, is constantly happy and tells us how much he loves us both constantly - it’s like he knows😀

Focus is currently on toileting and clearing up the speech to help him develop and make his school life so much more fun for him.

I can really understand your thinking in tackling the very apparent issues that cause him difficulties day but day. I’m not someone who thinks every child needs a label, but full assessment will give you a better sense of what’s underpinning there developmental delays, and can help identify effective supports. There are such varied schools of thought especially in kids where developmental trauma is an issue - I’d want someone doing a comprehensive assessment of need for him, you can then if you wish access private care with a clearer idea of what you’re looking for.

In terms of senior school, I’d be paying attention to the school ethos, what understanding do the staff have of developmental trauma and how it can impact children, what experience do they have of working with children who have complex needs, how do they support them day by day, what links do they have to statutory supports eg Ed Psych etc. I know you might be scared if you ask the questions they might not accept him but better to know now how they approach additional support needs than to place him there and find he struggles.

What we do know though is he smiles every day, is constantly happy and tells us how much he loves us both constantly - it’s like he knows😀

He will have some knowledge of his differences, it sounds like you’ve built a safe, nurturing home for him. I think everyone at some point thinks “what if we’d never done this, how easy life would be”, but then you’d never have that joy amidst the tough bits.