More details on Yussuf's special needs
Yussuf suffered from a brain damage at birth because of the lack of oxygen at delivery. The parts that we know so far got affected in his brain are:
- The part that controls our body movement and that sends the signals to the muscles.
- The part that controls the processing of the images we receive from the eye.
Doctors are telling me he is cognitively delayed, but I feel his cognitive delay is mostly because of his physical disabilities, rather than the brain. But we will see. We are discovering more with time what else got damaged in his brain.
He has mainly 4 problems with movements
- His muscles are not strong enough to do the right movements.
- His brain sends the wrong messages to the muscles, so for example when he tries to hit the ball, his hands get very stiff. In order to do any movement, muscles need to use the right strength to do the movement. If you send too much force or not enough force, you can't initiate a coordinated movement.
- Our brain is programmed how we move. For example, if we want to go from lying on the floor to sitting, we all automatically shift our body weight to one side, lift up, and rotate our body and shift weight back to balance up. Any movement we do is actually a series of programmed lines in our brain. Yussuf doesn't have this program in his brain. It got damaged. So now, we need to teach him all those missing lines, line by line. Ok Yussuf, you want to walk for example, shift body weight to one side, move one foot up, then forward, then shift weight to other side, then move other leg up and forward...(see his video "Yussuf 1st steps"). Because his brain program got messed up, he does many movements that are not coordinated and we need him to stop all those bad movements and learn the correct pattern of movements. For example, he always goes backwards and into extension. (see his video "Yussuf learning to sit")
- Once our body can move, we need to know how to move. This is called motor planning. Yussuf doesn't have that. For example, if he is rolling and gets to an end, he will still try to continue rolling the same direction. His brain doesn't register that it is the end, I can't roll anymore this way, I need to change direction. (see his video "Yussuf loves his ball")
Oral skills and Feeding
Since his brain send the wrong message to all his body muscles, his oral muscles are also affected.
- We have a tunnel in our throat controlled by muscles that either takes food to our stomach or air to our lungs. He cannot control those muscles well, so food or liquids can go to his lungs, which is very dangerous. That is why he has a G tube. He is allowed to have a certain consistency of purees. But liquids need a lot of control to go the right way, that is why he can only have liquids through his G tube.
- All the oral operation we do when we eat from using our tongue properly to move the food backwards, or to move our tongue sideways to get food, to do rotation of our jaw in order to shew.....all this is not automatic for Yussuf. We need to teach him all those concepts.
- Lip closure is a big problem that he has. He either doesn't close his lips properly and food and saliva keep coming out. Or he closes his lip too strongly that he bites on his lip and cut it to bleed. I will explain more about his lip biting on Yussuf story from 7 to 10 months. That was the worst nightmare we had to go through since his birth !!!!
- Gagging and vomiting is very common in kids like Yussuf. See Yussuf story from 3 to 6 month for more details on my struggle with this problem.
- Sensory problems:
- If you don't fill his mouth to the maximum, he doesn't feel he has food in his mouth and he wouldn't trigger a swallow.
- He doesn't know when he is hungry or worse when he is full. I am the one that controls how much he eats, of course with the help of a dietician.
- The temperature of the food and the different textures of the food is also an issue for Yussuf. Cold food will make him trigger a swallow. Hot food makes him gag more.
In order to speak, we need to control the muscles in our throat, we should know how to use our tongue in all direction and we have to control our breathing and speaking. As you can see from the previous info on his feeding, all these actions are a challenge for Yussuf. That is why he is not verbal at all. A cognitive aspect of it is also involved.
Yussuf has cortical visual impairment (CVI), which means that his eye balls are ok, but his brain doesn't process the info it receives from the eyes. His eyes muscles are weak too and make his eyes turned in, that is why he has glasses now that helps his eyes focus more and since he got them, I feel he is seeing better.
However, there is no glasses that help his brain to see the pictures. He is getting visual therapy to help him reprogram his brain. However, I still don't know how his vision is going to be affected or how much it can improve.
We know now that:
- He needs more time to process any visual info.
- Seeing and hearing in the same time is hard for him.
- Seeing the details of objects is an issue too for CVI people.
Yussuf has quadriplegia spastic athetoid cerebral palsy, which means both hands, and feet are affected. So he doesn't have any fine motor skills. He doesn't hold anything in his hands. Using fingers in different ways to do everyday tasks is going to be one of his major struggles. Right now, we are only working on him opening his fisted hands and teach him how to hold simple stuff in his hands. His vision affect his fine motor skills a lot, cause if you can't see an object properly, why do you wanna even hold it !! If you don't have trunk control, it is also impossible to use your hands, think of a drunk person who can't balance himself trying to open the door with his keys !!
Will Yussuf ever be "Normal"?
NO! Unfortunately, there is no cure for cerebral palsy. Since the part in his brain that got damaged will always be damaged, Yussuf cannot be "normal" again. However, people that have cerebral palsy can range from being completely dependent (can't sit, walk, hold head, feed....) to almost completely independent. The higher end of cerebral palsy people can walk. Yes, their walk is a bit funny, but who cares as long as they can walk!! They can speak, but with a lot of difficulty and their speech is not very clear. But again, as long as they can manage to communicate, that is what matters!
The main factor that decides on which end a cerebral palsy person will fall into is the amount of therapy they get and the expertise of the therapist.
That is why I am doing this fund raising, to be able to get Yussuf the maximum therapy possible in order to push him to his maximum potential and hopefully make him reach the higher end of cerebral palsy people.