I must admit that I recoiled a little when I typed out that title. When it comes to parenting, I feel that every parent is perfect and does the best to get the best for their own children. And each child being so different, and I am certainly no expert. So read this, knowing that I am stepping tenderly here, and this advice is coming with the best of intentions of a few years of working with parents who have children with special needs.
Being a parent of a child with special needs, you may often come across wide eyes with glares and whispers near you, this situation can be overwhelming.
For some parents, just trying to understand the gap between the desires for their child, and the disability that exists can lead to grief, depression, or shame. They end up asking “why me” or conclude that this is due some punishment due to bad act or past sins.
YOU ARE NOT ALONE IN THIS!
Parenting a Child With Determination has Days That Includes:
- Frustration towards “helpful” advice from those who have no idea about your daily stresses.
- Antipathy that every day is filled with new difficult encounters.
- Uncertainty of what’s best for your child.
- Sadness for desires unfulfilled and guilt for feeling responsible for it.
- Irritation with conflicting data from professionals.
- Envy towards parents who have “neuro typical” children.
So What Can You Do?
- Know your child:
Always find the best pediatric occupational therapy expert opinion who can make you understand your child’s situations better and what is to be expected “next” in your life. Your pediatrician, neurologist, and team of therapists should be well aware of your situation and be able to guide you in all possible paths of your child’s life. Research findings show that the way a diagnosis is explained to parents can have a positive and prolonged effect on the parent’s attitudes toward their child and professionals. Write down the key points of your child’s likes and dislikes, of what he/ she likes to eat, play, which kind of people they would prefer being around with, what makes them cringe, etc.
- Find a support group:
When you have likeminded people, walking on the same path as yours, your journey becomes easier. Asking for help isn’t any sign of weakness, it makes you stronger. Let your family be a part of this, it helps in brain storming family problems for better solutions. Don’t get secluded from a family gathering just because you’re a parent of a child with special needs. You can ask your pediatric occupational therapy specialist, or child’s teacher for any academic help needed.
If you are parents of a child with special needs, make the time to work on your relationship. This may be easier to say, but practically too difficult. Both the parents love their children and ultimately often land up in disagreements in a lot of things, leading to unnecessary ugly outcomings. Divorce rates/ separation rates are higher among parents of special needs children. This is something that you need to be aware of and therefore, guard against. Communicate, communicate, communicate. Get outside help if you need it.
Make the siblings also an important part of your child’s progress. It’s often noticed that siblings of special needs may feel “slighted” at times. If it happens, it doesn’t mean that you’re a bad parent, it’s a genuine human error. Make sure that every child gets an equal amount of attention and time. Also engage the siblings in the therapy of your child. There could be days where you can make the siblings volunteer to babysit, eventually strengthening their bonds.
- Therapy is Essential:
It is understood that going through countless number of therapy sessions becomes frustrating, with milestones that they achieve is the size of the pea. But one thing to always remember, for children, therapy is play and play is therapy. It is always essential to find the best pediatric occupational therapists who will keep your child engaged in challenging activities that he/she otherwise would have balked at.
Celebrate small victories, “Oh my child had his/her first step after trying to make him/her walk for 5 years”, “Today my child followed my one step command”, “He/she took a first sip of water after being on PEG tube for 3 years”, etc. It is famously said that “Rome was not built in a day”, raising a child with special needs is no different. You deal with tantrums and meltdowns. And most often manage not to have a tantrum or melt down yourself. You encourage your child to do things doctors told you they would never do but you never gave up hope. You know your child the most. You are no regular parent. You’re a SUPERHERO!