Parental concerns about caring for children with special needs- Episode 1

Parental concerns about caring for children with special needs – Episode 1

Caring for children with special needs is now made easy. Nayi Disha has launched the “Ask Me Anything” series with Neuro-Developmental Pediatrician Dr. Ajay Sharma, where he addresses general parental concerns about care of children with special needs.

Questions being addressed in episode 1 of audio series :

Q1. My child with autism can say words but not string them into sentences. What to do and how to help him?

1. The key here is to encourage and motivate the children to communicate with people around them. Some informative articles on this topic can be found on the Nayi Disha Website.

2. In order to encourage them to move from words to sentences, it is important to first make a list of words that your child already knows and uses frequently. For example, if the child uses the word ‘water’ or ‘milk. You can then use other words to form a sentence, such as ‘I want milk/water’.
3. The parents and other family members should use these sentences in front of your child, in real life situations. By modelling this combination frequently, we are teaching and showing the child the use of the words. Make sure you keep the sentences short and do not make it too difficult for the child to imitate.
4. Encourage the child to imitate the sentence, once it has been modelled to the child enough. This can be done by saying the sentence in front of the child and waiting for the child to repeat. Verbal prompts can be given to the child initially to help and encourage the child to repeat.
5. Acknowledge any attempt the child makes to use the sentence. This will further motivate the child to keep using the sentence to communicate
6. Do not introduce too many new words at a time or make very long sentences. This might overwhelm the child and can be counter productive.

Q2. My child has sleep issues and is moody. How to improve his sleep?

It is important to understand that sleep concerns are quite common in children with autism and ADHD and there are ways to work around these concerns and help the child. In order to improve the child’s sleeping patterns:

1. Children should be active and involved in physical exercises during the day such as walking, running and other such activities. This makes sure that the child has enough physical activity and they are tired at the end of the day.
2. Be consistent with a sleep routine you prepare. This should be religiously followed everyday to help form a healthy sleep pattern.
   1. Develop a healthy sleep routine by first
   2. Picking a suitable bedtime
   3. Prepare the child for bedtime by restricting stimulating activities, restricting screen time
   4. Read a book or sing songs in a calm fashion
   5. Use visual schedules to help the child understand the bedtime routine
3. Minimise noise or bright lights in the bedroom. This will help create a calm environment and will help them settle down with a proper routine
4. If a child is still not settling and having a proper sleep at night, it may be helpful to maintain a sleep diary (tag), and seek help from a physician for further help.

Q3. My child kicks a lot during sleep. Should I be worried? What to do about it?

A disturbed sleep may result in the child being exhausted and tired during the day. It is therefore extremely important to ensure that the child has an undisturbed sleep at night.

1. Maintaining a healthy sleep routine by avoiding exciting activities, reducing screen time 2-3 hours before sleep and maintaining a calming environment in the child’s bedroom.
2. Check for any cases of possible worm infections in the child. This too may result in physical discomfort, resulting in a disturbed sleep. Consult a doctor who may prescribe a medication for testing this.

Q4. My child has been diagnosed with Muscular Dystrophy. What line of therapy intervention is recommended for managing such a diagnosis?

Muscular Dystrophy is a genetic condition caused due to the lack of a protein called dystrophin. This results in improper development of muscles and weakness in children which worsens with time. There can be other associated conditions such as concerns in swallowing, eating, psychological conditions, concerns with bones and heart or developmental disorders

The line of treatment therefore depends on the signs of the child. The mainstay to manage the condition to address muscle weakness is generally physiotherapy and low impact physical exercises as advised by the doctor and the therapist.

Medications may also help improve muscle strength. However, many of these medications may have side effects and hence these medicines are required to be prescribed by a competent physician after a thorough evaluation and under careful monitoring.

Other conditions and concerns in children with muscular dystrophy should also be assessed for and a suitable line of management devised to suit the child’s specific needs.

Q5. My child with Down’s syndrome has alopecia and there are bald patches on the scalp. What to do?

1. The treatment of alopecia depends on the underlying cause. In some conditions, hair loss may be due to fungal infections, which should be determined by a doctor and suitable medications advised accordingly.
2. Another possible cause of alopecia may be due to atopic dermatitis. This can be treated with topical creams as advised by the physician.
3. In children with Down syndrome, alopecia may also be due to a thyroid hormone deficiency – another commonly occurring condition in children with Down syndrome. In such a case, it is important to first undergo an evaluation to check for the thyroid hormone levels and address the concern accordingly.

Alopecia is quite common in children with Down Syndrome and it is often seen that the hair regrows after a few years without  any medication. It is therefore important to first identify the underlying cause for the hair loss and find a suitable line of management for the same.

Watch Episode 2 on Parental concerns about caring for children with special needs

You can also check Health and co-morbidities from Nayi Disha’s website.

If you have questions about Autism, Down Syndrome, ADHD, or other intellectual disabilities, or have concerns about developmental delays in a child, the Nayi Disha team is here to help. For any questions or queries, please contact our FREE Helpline at 844-844-8996. You can call or what’s app us. Our counselors speak different languages including English, Hindi, Malayalam, Gujarati, Marathi, Telugu, and Bengali.

Disclaimer : Please do not consider this audio clip as medical advice. This guide is for your information purposes only.