Today is World Cerebral Palsy Day. Since the foundation of the fund, together we have supported more than 1 000 children with this severe development disability by the amount of charitable programs such as “I Dream to… Live!”, “Canistherapy”, “Verticalization” and material assistance programs. We have paid for children’s rehabilitation courses and working with therapy dogs, for special equipment, for medical examinations by highly qualified specialists, for making orthoses and conducting genetic tests. With our help, there are amazing changes in the lives of children with cerebral palsy. Here is the story of Nastya from Dolgoprudny, whose mother reveals the secret of how to make a child with cerebral palsy happy.
Nastya is 8 years old. She stands near the wall bar and slyly smiles. Suddenly, she grabs the crossbar, then the next one, and here she is! – she is on the top of the wall bar. Then she goes down, jumps to the floor, and keeps jumping. Ha! If Nastya had a balance beam at home, she would show us how she can walk along the balance beam from the very beginning to the end. But there is no beam, and Nastya heads for another room, where she takes toys from the dresser. The last time Nastya surprised her loved ones was the time she walked across the floor “like a spider”. It is hard to believe, because for seven years out of eight Nastya has been living with cerebral palsy. For last 7 years Nastya and her mother really work a miracle – they turned “I want” into “I can”, and that is what many children and adults with cerebral palsy dream about. The Diema’s Dream Fund supported Nastya as a child with severe development disability more than once by paying for rehabilitation courses, so, the happiness of this family is our joy.
Nastya’s mother, Elena is convinced that mothers who have had a child with cerebral palsy should never give up. And then, as for her experience, there will certainly be wonderful doctors and foundations that help children to overcome difficulties and turn the child’s natural “I want” into “I can”.
“The happiness of the child depends on a mother’s faith in the best,” – there is the Elena advice to all mothers of children with cerebral palsy. – “Do everything you can do to help your child. Even if a child has few chances to start walking, however, it is necessary to ease his general physical condition to make the child feel better. So then in the distant future you will not have to regret that you did nothing and could not help your child in any way. There is no place for despair – everyone has a chance, and maybe your child will also have this chance. It is really important to love your special child, because they feel your love, and deserve love just like any other child.”
Nastya’s story is similar and different at the same time as the stories of thousands of other children with cerebral palsy. Nastya was born a premature baby. When she was 8 months old, the pediatrician said that Nastya had “at least cerebral palsy”. Sometimes, this diagnosis is made at a different time and under different circumstances. But whenever it happens, mothers can change a lot of things.
Nastya was lucky to have her first pediatrician. An experienced doctor of the department of premature babies of the Filatov hospital examined the girl’s legs and arms and said that even though Nastya’s reflexes are preserved and she will be able to walk, there will be a lot of work. The doctor advised the path to the rehabilitation and concluded: “You should know that it depends on your efforts, – the age which she will be able to walk”.
At the age of 1 year and 1 month, Nastya was qualified for a disability. Doctors prescribed early-aid medications for regular use and recommended to take regular rehabilitation courses. From 1 to 2 years old, the family took rehabilitation courses in the hospital every 4 months for 3 weeks. Then Nastya’s mother began to search information about cerebral palsy, look for rehabilitation centers, chat with other mothers on forums and contact funds. From the age of 3, the girl was taking rehabilitation courses for a month every other month. At the same time, when she was 3 years old, she took her first steps, but started walking better only by the age of 5.
After rehabilitation courses, in addition to a positive result, there was also a negative one, when previous achievements were lost. It happens. The method of exercise therapy suitable for a particular child is not always easy to find. “You should try different rehabilitation centers; you should look for the doctors who have a strong connection with the child. An orthopedist, a rehabilitation therapist, a neurologist, an attending physician, and sometimes even a psychiatrist,” Nastya’s mother shares her experience. “Children are very sensitive to a high-quality specialist and a strong personality rolled into one. Children feel when a specialist thinks about them. When a doctor is about to quickly get the work done, the child will resist, and it will not be very effective.”
Some children will reach the best effect from enhanced exercise therapy, some of them – from the electrical muscle stimulation. The speech therapy massage, which stimulates the brain, is important as well. As Elena says, the attending physician is also really important, because they can prescribe drugs for the blood circulation to the brain, and this greatly helps the child to be more successful.
On the one hand, it is better to choose the most common and proven treatments, so that there is no rollback. On the other, it is important not to be afraid to try new rehabilitation centers and do not trust the reviews one hundred percent. For example, there were not so many good reviews about the center in Yoshkar-Ola, where the girl, as her medical experts recommended, took a rehabilitation course paid for by the Diema’s Dream Fund. But the specialists worked with Nastya conscientiously, and the girl made progress.
That is why here, at our foundation, we strongly recommend to mothers do not blindly rely on word of mouth, and trust in certified specialists in licensed specialized clinics and experts in foundations.
And the main recommendation from Nastya’s mother: you should work with your child every single day! Mom can really help her child.
“Be sure to sit side by side at all exercise therapy and massage classes, learn what they are doing to your child. After 5 sessions you will be able to additionally do some exercises and help your child between rehabilitation courses,” Elena says.
For example, Nastya holds her back perfectly, and her doctors praise her very much. Perhaps this is possible because her mother regularly exercises with her on the ball.
“We can do so much more when we captivate the child. Do it with a smile and joy and praise your child – all of this will create a positive emotional response, and the child will be able to achieve more. Involve the child in different activities. You can start with playful interaction, then it will be easier to come to success in a playful way”, – Nastya’s mother shares her experience.
For now, the greatest effect for Nastya is reached by sensory integration classes with elements of exercise therapy, as well as kinesiotherapy for three times a week. Nastya’s success story, story of a special child with cerebral palsy and other severe developmental disabilities, is replenished with new achievements everyday thanks to the girl’s dedication and the power of her mother’s love.
We really hope that it will be continued!