Louise’s story – life with a disabled child

In this personal article, adopter Louise, writes about her reasons for adopting and a surprise phone call about a birth sibling just a few months after their daughter moved in with them.  Louise also shares her experiences of discovering her son was born with an undiagnosed disability and the realities of the impact of this on their family life.

Our journey towards adoption first started in July 2019, we decided to consider adoption after being told that my husband Ryan had a very small chance of ever having a child of his own.  We tried for 10years, and after month after month of disappointed we decided to stop trying and consider other options.  We weren’t entitled to free fertility treatment as I already had a birth son who was 17 at the time, and we couldn’t afford the costs for it to then not work.

I first suggested looking into adoption in 2018, Ryan needed a bit more time to come to terms with our diagnosis and think about it for a bit longer.  One morning I was browsing through Facebook when I saw an advertisement from Durham County Council about an adoption information event, where you could come along and speak to some people and get advice and information and if you were interested, they would take your name and contact you. I had already sent in a registration of interest form prior to attending the event, so it wasn’t long before we were contacted.  A lovely lady named Wendy came out to visit us around a week later to fill out some forms and do a home check to make sure that we had enough room to bring a little one home.

Imagining our family

Within a few weeks we were accepted onto stage one of the adoption process, and assigned a social worker who would work alongside us, helping us to get to panel where we would eventually be accepted as approved adopters. We had been approved for a single child and during the process we got asked what kind of child we wanted to adopt.  It sounds awful as you feel like you’re picking and choosing and looking for the perfect child, but we got told that it had to be the right child for us as a lot of adoptions breakdown due to adopters taking on too much, because they think that they can handle a child with disabilities or coming from a tough background.  We decided that a child aged 0-2 would be perfect, we said no to bringing a child with disabilities home, only because of the impact it would have on our work life and feeling that it would be a lot to take on as a family.

An unexpected phone call

In summer 2019 we welcomed home Ava, she was a beautiful 14-month-old with bright blue eyes and curly hair, she fitted in perfectly and it was like she had always been a part of our family.  Ava had been home a few months when we found out birth mum was expecting a second baby.  Our social worker got in touch with us and explained that it was our decision whether we would want to consider taking on a sibling.  They like to try and keep siblings together where possible, but because we were only approved for one child, we would have to go back to panel again to be approved as second time adopters if we decided that it was right for us.

We discussed it and decided it would be the right decision for both Ava and the new baby to be brought up together and we didn’t want to take that away from them, so we prepared for another adoption panel as well as getting things ready for a new baby arriving.

We found out towards the end of the year that a little boy had arrived and had been put into emergency foster care as we had not been to panel yet, so were not yet approved to bring him home as approved foster carers.  So, the plan was to get us approved as foster carers while waiting for panel to become his adopters.  This took a long drawn out 5 months, for reasons beyond our control, but in the spring of 2021, he finally came home, and our family was finally complete.

Taking on siblings

When we first decided to adopt, we agreed to one child, as that is what suited our family at the time, but after bringing Toby home, we are so happy that we decided that to keep them together as it was the right thing to do.  There are so many siblings that are split up due to adoption, this can lead to an adoption breakdown, especially if the children are suddenly separated after being together with birth family or foster family, so if you have the love in your heart and the room in your home, then please consider siblings as an adoption option.  Toby had been home a few weeks when we noticed that something didn’t quite seem right, his right arm was constantly stiff and fisted, he was not wanting to sit or do tummy time, and I noticed he would stare blankly into space and straight through you at times.

One morning I witnessed his eyes moving from side to side like a shaking movement.  Within a few days of this he started having what we now know are infantile spasms, this can be very dangerous and needs to be under control ASAP.  We went straight to hospital as we knew this was not normal, and he had an MRI of his brain.  This is when we found out that he was missing a large part of the left-hand side of his brain.  One possible cause is that a blood clot in a vein had burst causing a bleed and a stroke in the womb, leading to that part of the brain to eventually die off.  This has left Toby with epilepsy and right sided cerebral palsy.

Life with a disabled child

After digesting the news, we shared it with our social worker and our children’s social worker, they were devastated that this was not picked up earlier and asked us if we wanted to continue with the adoption and that they understood fully if it was something that we decided we could not take on as a family.

We as a family knew there was no way that Toby would be going anywhere but home with us.  He was ours and we were ready to face any challenges that came our way and fight with and for him.  He was Ava’s full sibling and there was no way we were going to split them apart because of Toby’s diagnosis – he was the same baby boy as he was the day, he came home only now he needed us more than ever.

Now I’m not going to say that we weren’t scared about how it was going to affect us as a family.  We didn’t know fully about his condition; we didn’t know a lot about epilepsy or cerebral palsy apart from what you read or what you see on the TV, and it can be pretty frightening especially epilepsy.

It’s not nice to watch a baby have daily infantile spasms, to be on so many medications until they find a cocktail of drugs that reduces them but doesn’t fully stop them.  Then there’s the hospital appointments and the home visits from different professionals that are suddenly involved in your child’s care.  You suddenly become a carer as well as a parent.  It can take its toll on family life, so I’m not going to sit here and sugar-coat it and say that life is perfect, because some days can be challenging.  But all these extra challenges don’t come without all the extra love and patience.

To see Toby as happy as he is on a daily basis regardless of his disabilities is just amazing. He is more than just a child with epilepsy and cerebral palsy, he’s loving, he’s funny, he loves music and Cbeebies, he’s a home boy and loves to be at home snuggling on the sofa where he feels safe.

The reality of Toby’s disability

Toby’s disabilities mean he may not be like your average toddler – he doesn’t yet walk or form words.  He only has just learnt to hold his bottle to drink but doesn’t yet feed himself.  He only learnt to sit up unaided at 15 months old, but every milestone he meets is another milestone we were never sure he would reach.  He is such a blessing and has brought so much joy into all our lives as a family and we couldn’t imagine him not being here with us.

Now if we were to read about Toby on paper without ever have meeting him first, I very much doubt we would have agreed to bring him home, this is because what you read is not the full picture of the actual child.  I could write so much about Toby, but all people would see are his disabilities, and I believe if you’re not looking to take on a child with needs then you’re not going to want to meet the child in question.  I remember when we were looking through profiles it was the exact same for us, you forget there’s a child behind the words you read.

I will be forever grateful that we got Toby before his diagnosis, or we could have missed out on raising a beautiful happy little boy who is more than what is written on paper.  Yes, he has disabilities, but he isn’t a disability, he’s a child, like every other child who needs all the love in the world from a loving family to help him thrive and grow into a happy healthy adult.

The impact of trauma

Adopted children come with trauma no matter how young they are, or how little trauma they have experienced, being separated from birth family is a trauma.  Although we got Ava and she was a happy, healthy 14-month-old, she still has trauma. Ava sees a therapist once a week because she likes to be in control of all situations, her behaviour can spiral a lot most days and she can be difficult to parent – at times more so than Toby.

Toby’s condition was not picked up until he had been placed with us, so it doesn’t matter what you read about a child on paper, a child is more than just words written down, they come with challenges as do all children whether they are birth children or adopted.  It’s OK if you need to ask for a little help, it doesn’t mean we love these children any less.

Our children, especially Toby, have a lot of help and support, Toby has his consultants and physiotherapist as well as speech and language, portage (an early learning support service for pre-school children who have complex developmental needs), sensory and learning support.  He is part of an amazing charity called MATRIX who are absolutely fantastic, and there is so much help and support out there for you and your child – you will never be alone in your journey.

If there is a child out there with a disability, please don’t just look them over, ask for more information, read up on their condition – you may find it’s not as bad as what it reads, and it’s something you could maybe consider.  Children with disabilities often end up in long-term foster care placements because people are unsure or unwilling to bring these beautiful children home.  That’s where Toby might have been if we had only just read about him, had his diagnosis been picked up earlier.

Find out more

If you think you could provide a safe and loving home for a child or children with additional needs like Louise, please complete our enquiry form here or email us at adoptcoasttocoast@durham.gov.uk

Read more of our adoption stories on our ‘Our Children, our families‘ pages and watch our videos on our YouTube channel.