Background

Malachi is four and lives in Newry with his mum, Noreen, and older sister. He has autism and difficulty communicating, as well as low muscle tone.

Noreen explains, “I’m not going to say he’s non-verbal, because I’m hoping that the words will come. But at the moment, he has no words. Even if he just said one word, I’d be so happy. I just hope one day he could say something, anything.”

 

Malachi’s condition

Noreen says that Malachi’s first diagnosis came early on. “At ten months Malachi couldn’t sit up by himself, so I went to my local doctor and he referred me onto a paediatrician. He was quickly diagnosed with low muscle tone, but they also said that they thought he had autism.”

“I was in denial, but then we took him down to the rapid response team where he has six weeks of intense physio. Then we got the diagnosis for Autism, when he was two and a half. It was heart-breaking.”

It was totally brand new to us. Even when they told us, I didn’t believe it. I suddenly needed to know what I had to do to help Malachi all the time.

Malachi’s condition has a big impact on his physical health. “He has low muscle tone from the waist down and low mobility, he has rolling ankles and he’s flat footed. He didn’t start walking until he was around two, after having help from physio. He does get tired an awful lot when he is walking, but for him that’s normal.”

Noreen adds that communication is the biggest difficulty for Malachi. “I’d say communication is the biggest difficulty for him. It’s hard when he wants something and he can’t tell you what it is. Often, he’ll grab your hand and take you to what it is that he wants. But he can get quite frustrated when he needs something and you have to guess what it is.”

“I have done flash cards with him, and I point at the letters and sound them out. I do numbers with him, he’s very clever and can count to 100. I get some activities from his speech therapist to do as well. She said, whatever you do, tell him what you’re doing and where you’re going.”

“If we go to the park I’ll say ‘We’re going to the park,’ and I’ll ask ‘Do you want to go on the swing?’ and I’ll put my hand on the swing to make that connection.” 

 

Impact on the family

“I think as a parent it’s my job. Don’t get me wrong, I do get upset. I know he can’t tell me what he wants. But as his parent, I just have to get on with it.”

He is a really loving child. If you ask him for a hug, he’ll give you a hug. He loves hugs. I’ll say to him sometimes ‘Mummy loves…’ and he’ll point at himself. So he understands that bit.

Malachi also has an older sister. “She just sees him as her baby brother. There’s eight years between them, so she is a fantastic help. I sat her down and I told her about the diagnosis, and she knew that there was a boy in her class that had autism, so that was her understanding of it.”

Malachi is also very close to the family pet. “He’s the only one that gives the dog treats, and he knows that when he comes in from school he can give them a treat. That relationship really helps him. I think it’s great as well because we had the dog before we had Malachi, so they grew up together. The dog isn’t yappy or jumpy, and is really helpful for Malachi.”

 

How we helped

Noreen applied for the grant following a recommendation from Malachi’s physiotherapist. “His physio said that a trampoline would help him with his muscle tone, and said that even a small one would be so helpful for him.”

Before we got the trampoline Malachi couldn’t jump. He didn’t know how to jump. And so I applied for it and he was delighted with it, and he’s learnt to jump! He used the trampoline to learn, but now I can say ‘1, 2, 3, jump!’ and he jumps.

“I knew he’d love it. We decided to add a tent over the top to keep it dry, and so that he could use it in the wind. I added in some light up balls and sensory toys that he has, and he just loves jumping in there with them all around him. He takes us by the hand and we go on there too.”

 

How it made a difference

“It’s for his muscle tone, but it also helps him understand the area around him. If you’re walking on the ground, it’s likely to be very flat, but on a trampoline it’s a bit less predictable. That will help him to work on things like balance and stability.”

If someone was wondering whether to apply for Family Fund, “I would tell them 100% go for it,” says Noreen “because I know that I would never have been able to afford that trampoline and that tent. It was a fantastic experience, and so easy to apply.”