COPING WITH A SPECIAL NEEDS CHILD

Cheryl Butler
January 2007

As the parent of seven children, three with developmental delays, I have experienced both the heartache, and frustration as well as the joyful rewards that accompany any parent’s journey in helping their child succeed under trying circumstances.

That gray, icy March day, over eight year’s ago, that my oldest son was diagnosed with Global Developmental Delays, possible Autism, still sits like a dark shadow on the corner of my heart. My husband and I certainly were not expecting such a harsh diagnosis. Our sweet 2-year old son was simply not talking, we just wanted to know how we could get help from a Speech Language Pathologist, not an entire team of Neurologists, Phds, Occupational Therapists, Social Workers and Educational Specialists. We knew our son was delayed in speaking, but nothing could have prepared us for the extensive testing they put him through, or the scrutiny we would be placed under as we were interviewed endlessly by social services and others on the review team. It was the beginning of a journey that neither of us anticipated, however, we learned far more than we could’ve imagined we would during the process, and over the course of the past eight years, we are grateful that we have been able to guide other newly-diagnosed families on how to better cope and how not to waste time indulging in too much self-pity along the way.

Here are some guidelines that we established for ourselves once we came to terms with our son’s situation. We’ve followed these for two of our other children that were also diagnosed with the same label, Global Developmental Delay, possible Autism.

After Receiving the Diagnosis:

1. It's okay to grieve. No parent ever expects a child that is born healthy to face any type of significant developmental delay. Cry--scream that it isn't fair-- cry some more. Just do yourself one favor--don't focus on the grief for too long. Your child deserves more. You can't help him if you are wallowing in self pity. Gather yourself, take some deep breaths and focus on the future. It can be much brighter than you ever thought possible if you stay focused.

2. Sit down with your spouse/partner or any other support person you have and start getting an organized plan together as to how you can get your child the best possible services available. Be relentless! This is a new job that you have just been hired to do. You are your child's best advocate. Get out the Yellow Pages, go on-line, network and ask as many friends, family, neighbors, co-workers or other acquaintances if they know of anyone that has faced a similar situation with their child. Don't be ashamed. Your child is still a special gift, and you as a parent can determine much of your child's success by standing by him and getting him the services he needs immediately. Children under the age of three qualify for services called Early Intervention, offered through most towns throughout the country. Call your local school and inquire about programs that your delayed child may qualify for. Contact local hospitals and mental health clinics for referrals. By keeping focused and working on getting your child the help he needs, you will start to feel stronger and more hopeful. You will begin to feel like you are in control of this situation and won't feel as helpless.

3. Join parent support groups in your area as another great resource. Just keep in mind that you don't want to be sucked down by a group that is inclined to be negative and cry out "woe is us." Not all support groups are like this, but we happened to encounter a few. On the positive side, at one such meeting we did connect with a family that proved to be invaluable. They had a son with a similar diagnosis and gave us more information and referrals than we had gotten from any other resource. In fact, this family was responsible for helping us find a home-based program that worked with our son for three years, thus helping him to overcome his delays!

4. Be persistent. You will soon find that many of the programs available for special needs children are either state run or Government run. Most insurance companies refuse to pay for these services as well. You will run into much red tape, but if you are persistent and follow thru with phone calls and inquiries no matter how often you may hear the words "We don't cover that," you will soon find that you can get many of these services covered if you don't give up. There are plenty of grants and funds available, you just have to ask. Have your pediatrician help on this end as well. Most are happy to assist you with paperwork so that your child will get the coverage he needs as soon as possible.

5. Most importantly, love and enjoy your child. Your child didn't ask to have these delays placed on him and is young and vulnerable. Without the unconditional love and support of his family, he may never reach his full potential. Look for the positives. There are many things your child will be able to do, so celebrate those milestones and remember to praise, praise, praise him. If a child that faces tough developmental struggles has the warmth and security of a loving family behind him, the possibilities are endless. We know because we've helped three of our children to overcome very significant speech delays. We treated all of them as individuals and made sure to have very high expectations for each of them so that they could be sure and reach their full potential. As a family we triumphed over every little syllable and phrase that each of them spoke, and know now that we wouldn't have traded their early developmental years for anything.

6. Last but not least, keep a journal of your child's progress. This is an invaluable tool that will benefit your entire family. Watch and be amazed as your child learns new skills and gains more independence and self-confidence. It's a wonderful place to track any problem areas that your child may temporarily face. It's also a wonderful asset for your child's therapists and teachers. You won't be sorry if you take the extra time to invest in this important aspect of your child's growth.

This is just the beginning of many new paths that you and your unique child will travel on together. With the right attitude, keeping yourself organized and by keeping your home environment loving and nurturing, be prepared for this unexpected journey to be one that you will appreciate and that will make you and your family stronger and healthier.