Parenting a child with special needs can bring joy in unexpected ways. It can also bring frustration, anger,and denial. It can make parents question their faith and sensitize them to circumstances they never imagined would be part of theirlives.
Facing some hard truths about your child who has a developmental problem isn’t easy. The following is intended to shed some light on different therapies and what they actually can help with.
This article was originally published a year ago. It is offered as part of Best of the Best, so I wanted to make it available to those who may not have already read it.
I consider my son to be “special needs” . He was recently diagnosed with ADHD combined type. He has trouble adhering to a structured protocol, and needs re-direction and supervision to ensure that he is paying proper attention. My son has a never ending urge to chew on a variety of things: clothes, blankets, Legos and more.
I am the first to acknowledge that despite my efforts, it is likely that my son’s issues cannot be cured. Whatever combination of genes produced my wonderful child also wired his brain to work in a certain way. Once coded, the gene pattern is permanent. I can help my son learn to “harness” some of these behaviors in ways that will promote better attention and ultimately better learning. But I cannot fix or cure him of his ADHD. I can help decrease dysfunctional symptoms, and promote improvement in function, but I can’t undo what nature has done.
One of the most difficult parts of being a therapist is in talking to parents of special needs children, and explaining that I could help ameliorate the symptoms, and improve some of the movements, but I couldn’t cure their child.
I have seen firsthand how often a parent believes that the right medicine or the correct therapy will cure their child. In cases of developmental delay without a secondary diagnosis, this could be true.
Many children who are not meeting their milestones receive therapy and treatment and catch up in their development.
But when there is a significant diagnosis, the outcome may not be as positive. The goal of therapy is to help the child 100% of their potential. The key is in understanding their potential. I thought it would be helpful for me to go over some common conditions and discuss what type of treatment can help, and what kind of outcome to expect.
Cerebral Palsy- Babies born with CP usually experienced a brain bleed or oxygen deprivation pre-natally or peri-natally. Some developed seizures in-utero. It is very common with preemies and with multiples with low birth weight. Depending on the level of the bleed, or how severe the anoxia/seizures, there is usually some residual damage to the brain. Some damage may resolve without lingering problems. If there is enough damage to the brain, it usually causes problems with muscle balance. Some muscles get too much of a signal, and other muscles do not get enough. The actual process is a little more involved, but my description is adequate for purposes of discussion. When muscle imbalance cannot be corrected by the brain, movements cannot be controlled normally. No amount of therapy can reverse or cure this condition. What therapy can do is work with the child’s movement patterns, and try to improve the level of control. Children’s brains have plasticity, which means that they have potential to develop other parts of the brain to help with dysfunction. Many studies have shown that speech can still develop even when there has been damage to the speech center. Unfortunately, this does not happen with damage to the motor neurons. However, some treatment protocols can get huge improvements in quality of movement and ability, although they cannot make it perfect. Constraint induced therapy, motor learning theory and pattern based treatment are most effective.
Spina Bifida –This is considered a neural tube defect. In lay terms, the spinal cord is exposed at some point and the nerves are damaged. The level of disability is related to where the problem occurs. The more the cord remains intact down the length of the trunk, the better the outcome. Therapy plays a tremendous role in skill development. A good strengthening program will help develop the upper body so the child can walk with crutches and braces, or can propel their own wheelchair. When therapy is started very early and very aggressively, weak muscles can improve significantly.
Seizure Disorders – It is important to determine the cause of the seizures. In some cases, they disappear on their own. But in many cases, there are underlying neurological conditions. Seizures can also cause brain damage resulting in Cerebral Palsy and/or cognitive impairment. If the seizures have caused brain damage, the therapy can’t reverse the damage. What it can do is improve both gross motor and fine motor skills. The earlier the therapy is started, the better the result.
Autism Spectrum Disorder – I’ll always remember what a parent said to me many years ago. What made this diagnosis so difficult for her to accept is that her child looked so perfect. With genetic conditions like Down Syndrome and physical problems like Cerebral Palsy, the outside world can immediately see that something is wrong. Autism is not so obvious. However, it also cannot be cured -at least not at this time. Good therapy can make a huge impact regardless. My personal choice for treatment is a combination of ABA and sensory integration strategies. The ABA addresses the behavioral and social component, and the sensory works on organizing and calming the central nervous system.
Down Syndrome – There are a number of treatment protocols which best serve this diagnosis. The most important symptom to address is the low tone and joint laxity. This can be done with core strengthening exercises, ball therapy and NDT activities. The next important thing to treat is behavior. Generally, what sets Down’s children apart and makes them noticeable in public situations is their behavior. Their social and emotional skills need work right from the start. A good behavior modification program can have a tremendous effect. Good physical skills and good social skills will help them to be accepted by other children.
There are many more conditions that I did not touch on today. I wanted to speak about these in particular because the families of these children often expected a cure. While I hope that there is a cure in the not too distant future, for now there is not.
What is available is good treatment that can maximize the child’s potential and help them to be as independent as possible.