What does a learning disability look like?

This week is Learning Disability Week so I thought it would be a good opportunity to raise awareness about what a learning disability might look like, but also to hopefully reassure others who might be reading this who have children with a learning disability. Although it might look different, you're not on your own.

I also came across some comments on a Facebook post today. There was a community of people who had noticed an adult wearing some strange items of clothing and doing unusual things. Some of the people were aware that this adult had a learning disability and were trying to explain why this person acts in a certain way. It touched me because although some people weren't sure about these behaviours, there were people that had such positive things to say about this adult. They were trying to raise awareness and help other people to be kind, understand, to not be afraid, to be able to interact with this adult and not just ignore them. Oh, how I want this for Micah and Asher one day... 

What is a learning disability?

A learning disability is a reduced intellectual ability and difficulties with everyday activities. People with a learning disability tend to take longer to learn and may need support to develop new skills, understand information and interact with other people.

Fragile X Syndrome (FXS) is the most common inherited cause of learning disability. Of all the people who have FXS nearly all boys will have a learning disability but only a third of girls. 

This learning disability can be mild, moderate or severe which will affect the amount of support the person needs day to day.

Most children will need help with speech and language as well social and emotional interaction. Other aspects of FXS include short attention span, being easily distracted, acting impulsively, feeling restless, being very active and having heightened senses.

What causes FXS? Here's the science bit

There is a DNA segment which is called the CGG triplet repeat. This segment is expanded within the FMR1 gene, with 5 to 40 repeats seen as 'normal'. In Fragile X, this segment is repeated more than 200 times which then turns off/silences the FMR1 gene that prevents the production of the protein which is needed for normal brain development.

So, what does a learning disability look like for our boys at the moment when Micah is 7 and Asher is 3?

Speech and communication

Micah - had some limited words around the age of 2. Now at the age of 7 he can sometimes use a sentence with 7-8 words in it if it is a statement or question coming from him. If he is asked a question you might get a one or two word answer. He doesn't link sentences together yet and his words and questions are incredibly repetitive.

Asher - has no speech and none of the expected sounds that would come before that like the 'ma', 'da', 'ba' etc. Despite this, he can communicate very well by using some sounds, gesturing, showing, signing and pointing to pictures. He can also be very (very!) vocal by using sounds like um, uh and ah.

Understanding

Micah - It's hard to fully know where Micah's understanding is. It's difficult to measure. How much does he fully/truly understand something compared with how much is he copying or has learnt a certain behaviour without any understanding behind it? How much does Micah understand days of the week, months of the year, seasons? Does he actually know how old he is, or how old other people are? Does he understand his feelings and emotions, the concept of time, where he lives, what he likes and dislikes, money, body parts? The list can go on. Some of this comes down to just how he is cognitively but it is also tricky to measure because you would normally be able to ask your child questions and receive answers. With Micah, when you ask him direct questions it brings on anxiety. He can feel flustered and then he can close up. He then might not answer the question at all or might come out with really silly, non-related answers because he either doesn't know the answer or he can't figure out the question which then blurs his answer.

Asher - seems to have good understanding for his age. 

Gross motor skills

Micah - crawled but was very slow to walk. I think he finally toddled at 22 months but then this has had a knock on effect with other things like hopping, climbing, jumping etc being delayed too. Micah is also very clumsy on his feet and can struggle with coordination which affects activities like scooting and learning to ride a bike. He does however have an incredible drop kick :)

Asher - almost completely missed out crawling which led to poor upper body strength. He too was very slow to walk, finally taking off at 24 months. I haven't seen any hopping yet and the only jumping I see is when his feet don't fully leave the ground. He is however very confident when it comes to climbing.

Fine motor skills

Micah - really struggles with anything fine motor related. He works so hard at this every day at school but the struggle is real. This effects Micah's independence in many ways; brushing teeth, getting dressed and undressed, opening boxes, wrappers, bottles, doing zips and buttons. Holding and using cutlery, opening doors, writing, drawing, painting, playing with toys, doing crafts, building with Lego, playing certain games etc.

Asher - seems to have really good fine motor skills for his age.

Sensory processing difficulties

I am still very much getting my head around SPD but both boys show certain signs of this and self regulating behaviours which can look very similar to some Autistic behaviours.

Micah - flaps his hands and stomps his feet when different things excite him but he also does this to regulate himself when bored/anxious/tired.

Asher - flaps his hands, walks on his toes, hums, lies on the floor, bites his hand and he did chew on things A LOT! Many t-shirts ended up with holes in and many chewy toys were completely chewed through.

Play

Both boys seemed to enjoy and be able to engage with toys when they were very young but as they get older it is clear that play looks different for them.

Micah - has one main interest in play which is cars. His play is very repetitive. He will line cars up, move them to another place and lie them up again. He has also been very delayed in doing imaginary play. It never seems to include role play but might consist of him lining up his cars and talking as if he is remembering an episode from Paw Patrol or Super Wings. Play works better if we as a family are doing it together. He loves us all playing together (doing magnets or building towers) but he can then get incredibly excited about this and be quite impulsive which means the playing doesn't end so well!

Asher - likes to observe. So instead of playing catch with you, he likes watching you throw and catch a ball. Instead of playing with a toy hoover, he likes watching you play with the toy hoover. Currently at home the game he likes is hide and seek. But this is mainly seeking and not much finding. At preschool he is at the exploratory stage of play and therefore repetitive. For example, opening a playhouse door, going in through the door, closing the door and repeat... 

So there you have it...

Two brothers.
Both have Fragile X Syndrome.
Both have different personalities.
Both have different strengths.
Both have different struggles.
Both have differences responses and reactions.
Both need different levels of support.
Both have a learning disability.