Forgive the "baby genius" picture, yet any child with a CDK13 genetic mutation is much more clever than often perceived by their educators. Why is that and how should CDK13 children be educated?
The CDK13 genetic mutation relates to protein synthesis, meaning slower growth, slower development both physical and mental, and slower building of neural links from the brain to all bodily muscles, including to the tongue, to the hands and feet, to the intestines and to the bladder.
For educational purposes, all CDK13 children present as developmentally delayed, and a couple of mistakes can be made by the educators, given how new this genetic disorder is and how little information is available.
Mistake 1: CDK13-related disorder children have an intellectual disability.
This is commonly stated in several internet resources and can be misleading to educators. A child with a disability can be perceived as permanently disabled. Instead, it should be remembered that the CDK13 genetic mutation has so far been found to be heterozygous in all affected children, meaning that only one gene of the CDK13 genetic pair is mutated. The other gene in the pair is healthy and functioning. I like to say that one is lazy, and the other is responsible and hardworking.
This means that over time, given a lot of targeted sustained input and time, progress happens. This has been proven in several CDK13 children, with one girl in the United States now known to have graduated from college and to drive a car. Bravo to her parents and educators who have helped her develop.
Conclusion: Children with the CDK13 genetic mutation have developmental delay, yet can and will develop over time given correct input. Don't give up. Persevere. Have faith.
Mistake 2: CDK13-related disorder children are mentally "uniformly delayed".
Once a developmental delay is identified by educators, often an assumption is made that a child is uniformly delayed, meaning all mental skills are delayed, verbal and nonverbal. To add to the confusion, verbal skills are often perceived as the weakest area because of speech delay and lisping in CDK13 children. This is important because time must be allocated efficiently, yet it can be wasted on elaborate ways teaching a CDK13 child to comprehend a word, whereas in fact you can just tell them and they will understand it.
If your budget or your educational institution so allows, please do involve an Educational Psycologist to thoroughly test your CDK13 child and establish the relative strengths and weaknesses of their educational profile. I am purposefully saying "relative strength and weaknesses" and not the "level of delay", because - see Mistake 3.
Mistake 3: Testing a CDK13 child is helpful to pinpoint their true level of ability.
An Educational Psycology evaluation and all other tests and exams will produce results, which typically look like percent values. For CDK13 children, these are low. But are they reflective of the true level of delay?
Any professional will tell you that results of any tests (especially in special needs children) are affected by various factors. Did the child sleep well last night? Is the child hungry or thirsty, shy or afraid? Are there distractions present?
Once my daughter failed and EdPsych evaluation completely, not having answered much at all, because her TA (teaching assistant) was sitting next to her throughout the test and hugging her. Physical contact is the strongest distraction of all. Plus there was a hope or an expectation that the TA will help answer questions. Result: major fail.
Additionally, one must remember that most of the tests and evaluations are timed. CDK13 children invariably test much worse than they are because of this time limitation.
The above notwithstanding, exams, tests, and an Educational Psycology evaluation are of tremendous value to determine the "profile" of the mental ability. In the EdPhych report such profile looks like a graph (chart). It's a lovely and super-useful visualisation of a child's relative strengths and weaknesses.
So far I find that over the years, the profile's shape stays the same while the level of development off course goes up. Will it level out in the future? This remains to be seen.
How should CDK13 children be educated?
Short answer: SLOWER. But in practice it is not easy to implement.
When starting school at any age, a CDK13 child has already had a few years since birth when they developed slower tan their peers. I like to say the they are not their age: they are 1.5-2 years younger. This delay increases through the school years because a CDK13 child continues to develop slower than their peers.
Once entering the education system, the CDK13 child requires more time on every topic.
However often in mainstream schools topics are changed weekly, the class moves on. For a CDK13 child, this can mean that knowledge has not been absorbed. Year after year, time can be spent in school without learning much at all.
What can help?
1) Individual curriculum at school. This means that the child is taught slower, not in line with their class.
2) Homework and home tutoring. Parents can ask the teachers for each week's curriculum topic in advance and learn that topic at home, doubling the school input with home input of the same.
3) iPads and computers with educational apps. I have used iXL, both the US and the UK versions, and they are good in that they follow the school curriculum, you can do the level your child can do (even if it's for much younger children), and the programme praises the child each time they answer correctly, in a lovely happy positive way, which makes the child happy and keen to "play" more.
An individual TA (teaching assistant) and an individual curriculum can work well through primary school, but in secondary school they visibly underline the difference between the special child and their classmates. A special child can become conscious of their difficulties and of their isolation. There can be bullying and ridicule and your child may not find a way to tell you or to ask for help. It can become difficult to form friendships. If this happens, parents should consider a Special Needs school where your child will fit in. These come in very different profiles, of which their websites are often a poor indicator. Visiting schools and seeing the children there will help you get a feel of whether they'd be a correct fit. Then the school would typically test your child and offer a trial day, so that they too can see whether they are the right place and can meet your child's needs. This is objective and nothing to stress about (easier said than done).
Information on this web site is public. Please share it with others affected with the CDK13 related disorder or with anyone with an interest in SEN education. Let's together raise awareness and help others. As always, if you have any questions, please join our Facebook group (for parents of CDK13 children only) or write a private message through this website's contact page or on Facebook.