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So Your Child Is Born With Special Needs- What Now?

Updated on April 12, 2008

So your child is born with special needs. What now?

I remember the day clearly like it was yesterday. My son's dad and I had seen things in our son that concerned us, but we were in denial. At birth our son had a hard time nursing, he arched his back, he was jaundice and he couldn't maintain his body temperature. He spent his first few days in an incubator and when we finally brought him home he was a very difficult baby. I kept telling myself he would grow out of it, that he had colic, and that in a few months things would become easier.

When it became apparent that he was not focusing in on our faces, we waited a month to see if that too would get better, but it did not. The day came when we took our son to see an eye specialist. We argued all the way there, and when we finally heard the words that changed our lives, nothing in the argument seemed to matter anymore. Our son was blind, and it was brain related.

The next few months were a blur. I felt like I was plunged into darkness along with my son. It was hard to look into his gorgeous blue eyes and know that he would never look back at me. I was in mourning for the baby I felt I had lost, or rather the dream of his future, and I had a new child in front of me that I didn't know how to care for.

My child was born with special needs. I had to ask myself, what now?

1. Get Connected To Services

The first step you want to take is to find out what services are available to you in order to support your child's needs. This may be in the form of insurance, financial aide, SSI, medical assistance, and therapy programs. Any service that is labelled medical will be very expensive, and you will want to make sure you have a way to cover the costs.

2. Learn About Your Child's Needs.

One of the best things I did was to involve myself in my son's therapy at first. The therapists were very helpful and showed me things that I could do for my son. In addition, as a parent I was invited to attend classes free along side the specialists and therapists, just not for credit hours. I felt like there was a light in the tunnel because I was able to do something positive for my son. I became a specialist on how to care for his needs.

3. Build A Good Support System

One of the most helpful things you can do for yourself and your family is to build a support system. At first you may want to find a good counselling group with other parents who are going through the same issues as you. My son's birth to three program offered a weekly coffee break for parents to meet and visit while their children were receiving services. I learned a lot from other parents and the counsellor there about services available to me that I would not have known. It also helps with the grieving process to talk about it. You are not alone. Other supports to consider will include respite care and child care. It's not always easy to find a good caregiver for a child with special needs. My parents are my best support system.

4. Learn How To Advocate

Never forget that when it comes to your child, you are the expert. It is important that you are informed and can make good educated decisions on behalf of your child. When doctors start to try various medications with your child, read up on them. When schools deny certain services, know your child's rights. Find an advocacy group if you need to learn what those rights are. Sometimes advocacy groups have people there who are willing to stand beside you and go to those IEP meetings if you need the extra support. Remember, you are the expert and you are the one who will need to stand up for your child in their needs.

5. Lastly, Remember Lots of Love

Remember to focus on the positive side of life. Always be grateful for the little things that your child is able to do. Praise your child in all things, hug them, and let them know they are loved. It was difficult for me at first because my son was so sensitive to the touch, but after a few years with a lot of love and positive affirmative care he was able to reciprocate and occasionally give mom a hug back. Believe me, those moments and the smile on your child's face make all your hard work worth it in the end.

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    • profile image

      Trina  

      7 years ago

      Thank you, Jackie! My son has just celebrated his 20th birthday. My, how the time goes. He's doing well, and he is still home with me. Best wishes for you and yours too!

    • jackie.t profile image

      jackie.t 

      7 years ago

      Hey Mamma Train have just written a hub with a very similar theme. I can identify so well with that feeling of darkness that you speak of and realizing at some stage that there is light at the end of the tunnel after all, it just takes a long time to see it. I hope your son is doing well, best wishes to your family.

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