No one is ever quite ready; everyone is always caught off guard. Parenthood chooses you. And you open your eyes, look at what you’ve got, say” Oh, my gosh,” and recognise that of all the balls there ever were, this is the one you should not drop. It’s not a question of choice.” – Marisa de los Santos
Parenting is not an easy feat! Getting elevated to a place where one is responsible for the life and well being of another human being is not something that comes naturally to many of us. Most people take time to fine-tune this new responsibility, but the love, for little people that we create, helps us take this new role with all our hearts and make them an indispensable part of our lives.
Special needs parenting
Special needs parenting progresses the same way. Yes, the challenges of the present and the unpredictability of the future can throw us off balance but the ‘love’ always brings everything back to the centre. Having been at a place which I thought was going to swallow me alive about ten years ago, to a place where I can see ‘the big picture’ and the ‘futility of worry’, I can say with confidence, that most special needs parents worry because this is what our immediate surroundings, specialists or society makes us do.
Most of the time, the worries that we are most worried about never even happen, but as humans who have been conditioned with only one kind of ‘parenting’: children, identity, looks or ability, any deviation can make even the most sane people go insane with anxiety and see their future with tinted prejudiced glasses.
The World is still evolving..
This world is still walking towards a sensitive age, and may take a few more decades, but that doesn’t change the fact that you are a MOM or a DAD, and you have a little ‘you’ to touch and take into your arms.
If you are coming to terms with this new chapter of your life but wonder how to get started on this parenting journey, here are a few pointers for you to help. Read on
1. Network with parents of children with similar needs
The very first thing that you should do after the diagnosis is to reach out to the community of parents of children with similar special needs. Since these are the people who have actually walked the talk, you will be able to have your concerns answered without any judgements.
There are many such communities online and offline both, of which will happily add you to their group. For instance, the Humsafar group on Facebook is for all children with special needs, the Humsafar group on Whatsapp is for Down syndrome, and Action for autism is for parents of children with autism. No matter what your concerns or priorities are, you will be able to find a group that has parents of a similar nature.
There are also subgroups within special needs that further narrow down to particular programs, diets, motor skills, supplements, schooling, homeschooling, vocation or other areas that you may want answers from.
At the cost of modesty, I would like to tell you that the parents of children with special needs are some of the nicest, most compassionate and strongest people that you will ever meet. These friendships will help you stay afloat during any difficult time irrespective of whether that is because of your child or otherwise.
You can read about one of our previous Humsafar meetings here
45 Families, Goa, Fun And Down Syndrome!
2. Watch videos of children who are performing well and get inspired:
The way my daughter’s diagnosis was given to us, made us believe that she would be a vegetable, in the real sense of the world. I remember the first time when I saw a video of a boy with Down syndrome playing with a ball, I cried! I cried because till then I had no idea whether my daughter would even walk. That video and many subsequent similar videos of older children achieving goals that were thought to be beyond their reach, have given me not just hope but also the motivation to work consistently with my daughter.
This has also made me create a place on my Facebook page where I put her videos so new parents can get inspired. One video can change your perspective and your life. Don’t take them for granted.
3. Get a comprehensive medical checkup done
Our children are not SICK or have illness, they are just born with a condition. This condition can manifest in various medical issues but those issues can be dealt with, with medical intervention. The one thing that you should do is to get in touch with older parents, a federation or an association that is working in the field of your child’s disability and get the number and kind of tests that your child needs to get done after their diagnosis.
Each disability has different possible issues that can arise or not arise in a child but it is advisable to get prepared. For instance, in Down syndrome, an annual checkup needs to be done on the child’s vision and hearing. A bi-annual checkup of thyroid and dental should also be followed. Getting on top of medical issues helps a child achieve his true potential easily and early in life.
4. Early intervention
This might sound a technical term but early intervention is the key to your child’s better life. Early intervention should begin any time shortly after birth and usually should continue until the child reaches age three. Development is a continuous process which begins at conception and proceeds stage by stage in a sequence.
Each of the four areas of development (gross and fine motor, language, social development and self-help) has specific milestones that serve as prerequisites for the stages that follow. Most children achieve each milestone at a designated time; however, because of specific challenges associated with various special needs, our children will likely experience delays in certain areas. They do achieve all of the milestones but just on their own time.
Physical therapy for neck control, rolling over or crawling, Speech and language therapy for pre-speech and pre-language skills, for strengthening baby’s jaw and facial muscles, visual and auditory skills, tactile skills, oral-motor skills or cognitive skills. Similarly, occupational therapy to develop life skills and independence are some of the therapies that can help a child effectively in their early years to have a better quality of life later.
Here is a milestone chart for children with Down syndrome
5. Your child is born at the best time in the history of the world
We all know that disability awareness is a relatively new thing in the world. Even till the late 70s, children with special needs were institutionalized all over the world. But looking at the kind of progress, sensitisation, awareness and policies we have today to support our children, we can easily say that the disability world has made huge progress in just a few decades. Today, we have governmental support but also NGOs, parent support groups, huge awareness campaigns, sensitive masses and technology to help us raise our children in the best possible way.
Facebook has thousands of support group pages where one can reach out to specialists, therapists, parents and other people in any continent of the world. One can access programs, books, and resources from all over the world sitting in the comfort of your home. You can compare notes over Skype or FaceTime with another parent and make strategies and plans to suit the needs of your child while saving your valuable resources like money, energy and time. This is why it is safe to say that your child is born in the best of times.
6. Read, Research and learn to separate the chaff from the grain
The best part about becoming a parent in this age and time is undoubtedly the access to resources, books and programs. However, just like not every activity is critical for all children, similarly not all programs are needed for our kids with special needs. In this context, reading, researching and discussing this with fellow parents is of paramount importance.
There are a thousand programs ( local as well as international) that you can do or make your child do, but it all needs to be decided to keep in mind the relative investment of time, money and energy and if it is worth all the effort. Many times, milestones that parents worry about are achieved by children on their own timelines. Pushing them can do more harm. This is why before choosing to invest yourself in a program, read extensively, read testimonials, talk to several parents who have done it, do thorough research, ask to see tangible results or wait a little to see if you really need it.
You may also like: Special Needs Parents: 6 Practical Ways To Stop Worrying And Start Living
7. Stop worrying about social stigma
If you think the ‘social stigma’ will be the most difficult thing to deal with, then let me pass you a secret. It doesn’t really exist! I believe the social stigma is like a mirror that we take along with us wherever we go. And we only see our insecurities and shame in that mirror.
The truth is that if you decide to leave this ‘mirror’ home and be comfortable with your child, the stigma will cease to exist. Imagine two parents with their two special needs children. One is trying to hide the child, talking in hushed tones, looking around sheepishly, head down, embarrassed to be out with the child, and the other laughing, enjoying, playing and happily being in that moment with the child. You can decide which one gets your vote.
8. Enjoy your parenthood
Your life will not be ruined or wasted because you have someone with special needs to look after. This is going to be a journey of your child, you are going to be a part of it. You can make this journey as good or bad as you choose.
The moments that you might lose in over-research, sulking, depression or crying are never going to come back in your or your child’s life. He/she will never be two months, five months or one year again. As much as your child needs you, you too need to live these extraordinary parenting moments and keep them safe in your memory box because soon when your child will be a teenager, you will want to open that box to relive in those times. It might seem difficult but this is the only way to be! Keep believing and rejoicing in this experience of parenthood.
Love
Aarshia and Mama
