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Coping with a Special Needs Diagnosis

It is devastating to receive the news that your child has special needs, but it doesn’t  have to derail your life.  Mighty Mommy has 5 tips to help you move from diagnosis to acceptance.
 

By
Cheryl Butler,
February 4, 2013
Episode #218

Coping with a Special Needs Diagnosis

 

In last week's episode, we talked about what to do if you susect your child has a developmental delay. I encourage you to check out that episode for practical advice on how to proceed if you are concerned about your little child's progress.

If you have taken all the steps outlined in that episode and it turns out that your child has been diagnosed with special needs, you will inevitably experience the various stages of grief when coping with this news. I know this firsthand because I experienced it when my now 18-year-old son received a diagnosis of global developmental delays when he was just 3.  These stages include:

• Denial: This is the time period during which parents often question the diagnosis.

• Anger: This is the “It’s not fair!” stage when a parent may blame him or herself for the child’s delay or get mad at someone else. 

• Bargaining: Parents may think that maybe they can fix their child. We obsessively reach out for any and every treatment out there.

• Depression: Feeling sad and a sense of loss are all normal.  Most parents have been setting up life goals for their child before he or she was even born, but just because there is a diagnosis today, does not mean the child’s life still won’t be wonderful.  All it means is that there will be a different path traveled to reach their future goals  In a way, it’s like a period of mourning. The “perfect” child is no longer.  We’ll talk about how to embrace this “new normal” in just a minute.

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And  for some parents it’s not a one-time experience. In fact, Mighty Mommy has been through this three times!  So, how do you move forward once you get a special needs diagnosos? Here are 5 tips that can help you cope and, more importantly, create a wonderful life with your child, despite any delays and obstacles.

Tip #1:  Take the Time to Grieve and Accept What Is


Whatever diagnosis your child receives, you must take the time to grieve what “could have been”—meaning all the dreams you had for your child at birth or before must be experienced, even if you don’t know with certainty what the future holds for your child.  Don’t skip this very important healing step for yourself!

Tip #2:  Find Appropriate Resources for Your Child

After finding out your child has a disability, most parents become information seekers. While finding information can help parents understand what’s ahead of them, experts also urge caution about where they get it from.  A lot of people turn to the Internet. After all, everything’s accurate on the Internet, right? But in this case, you’ll find lots of extreme stories which can be extremely difficult or discouraging for families.  I caution you not to focus on this type of information. While it’s important to interact with other parents in your same situation, remember that everyone’s story is different and, truthfully, much of what you read might not be completely credible.  Instead, try seeking out advice from:

• Your child’s healthcare providers: Pediatricians, developmental specialists, and counselors. Make sure it’s someone who is familiar with the diagnosis.

• Websites that are national resources: Many conditions have national advocacy organizations, both in and outside the United States.

• Other parents:  Ask your pediatrician for other families who have children with the same diagnosis.   I work with my children’s pediatrician all year long to help families with newly diagnosed speech delayed and autistim spectrum disorder cases because I have experienced the gamut: from receiving early treatment through to helping my children overcome their challenges and seeing them off to college!

• Schools: They can help map out your child’s education plan and show you different programs that may be beneficial. Most school systems provide services for children with special needs starting at age 3.

Getting that information slowly gives parents the control back that they have lost.  Families need to realize they’re not alone and that they can do this.

Tip #3:  Coping Tips for the Everyday

• Love your child. Focus first on the fact that this is your child and second on their special need.
• Play with your child by getting down to his level so that  he can really interact with you.
• Get therapy -- speech, occupational, physical, and educational -- as soon as possible.
• When professionals come to your home to work with your child, learn as much as you can from them and how you can implement some of the techniques they use to challenge your child.
• Say your child's name often, especially when you are giving praise.
• Accept that your child will develop at her own speed and in her own way.
• Keep careful records of date, time of day, location, who was present, and any other characteristics you can think of to indicate what your child can do and any changes in your child's level of ability. Also record what was happening at the time of any problems that occur to see if you can identify any triggers.

Tip #4:  Get Support

There are many support services and support groups to help you. If you live in the United States, every state has a parent training and information office or agency that serves to help parents of children with disabilities or special needs. If you call your state's office (locate your nearest office by calling toll-free at 1-888-248-0822), they can let you know of the office nearest you. Remember, you are your child's first support and champion. You know your child better than anyone. The more you know about what resources and services are available to you and your family, the better choices you can make.

Many parents find it useful to join support groups that provide both information and understanding. Becoming involved in educational activities through playgroups or early intervention programs can also be a source of support.

To find parent support groups in your area, contact:
• The Arc
• Easter Seals
• Autism Speaks


Tip #5:  Additional Important Resources For Parents

Early Intervention services are for children ages birth to 3 and can be pivotal in helping your child to make as many early gains as possible depending on his/her diagnosis.  Find out how to access early intervention services in your area by talking to your child’s pediatrician or by contacting a local hospital. NECTAC (the National Early Childhood Technical Assistance Center) is also a great source of this information. Use NECTAC’s Contact Finder located under “State Programs Under IDEA” and select “Part C Coordinators. The Contact Finder is online, at: http://www.nectac.org/contact/contact.asp

Special education services are meant for children over the age of 3. Services are provided to eligible children free of charge through the public school system. If your child has passed his or her third birthday and you’re concerned about a developmental delay or disability, call your local school (even if your child isn’t enrolled there) and ask how and where to have your child evaluated under IDEA,  special education law here in the United States.

I know this can be an overwhelming and scary experience, ut I am here to tell you that with the right help and a lot of hard work, you can help your child overcome a lot of their challenges. My son whom I mentioned in the beginning of this episode -- is now a gregarious, wonderful teenager who is headed to college in the fall.  

Do you have a child with special needs?  How did you cope at the beginning of your journey?  Please share in the comment section or post your ideas on the Mighty Mommy Facebook page. You can also connect with me on Twitter @MightyMommy or e-mail me at mommy@quickanddirtytips.com.

Check back next week for more parenting tips.  Don’t forget to check out my family-friendly boards at Pinterest.com/MightyMommyQDT

Remember, you are your child’s biggest advocate.  Be patient, be positive, and revel in his/her victories!  Until next time…happy parenting!


 

 

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