Lorraine
I am glad you are interested and that he has been diagnosed. It is very difficult to get diagnosed as it is so rare. My son 16 uses built up pens or pens that are wider than regular. You can get foam grips that are soft that slide over the pens themselves. Frequent writing breaks are necessary also. Look at all all angles including his desk and sitting area to make sure he is comfortable to begin with. My son also uses a lap top computer to take notes as there is less pressure needed to type than to write. You may use a tape recorder to tape notes instead of writing them. There are also silver ring splints that support the fingers affected and do not allow them to move beyond a natural range of motion for the joints. They must be fitted and can be expensive. I do not have the web site for them but try searching it should come up. If you have access to an occupational therapist use them. They help people create thier environment more suitable to thier disability. Alot of Ehlers people suffer chronic pain and this also affects thier level of concentration and also thier fatigue level. Again change tasks frequently and rest when necessary. I am so glad he has a teacher that cares, that in itself will go a long way to helping this child feel good about school and his role in it. It is fairly common that people with Ehlers tend to be very smart and have higher IQ's sometimes thier disability affects thier outcomes but they have alot of potential.