Raising kids with special needs is challenging, exhausting, frustrating and isolating. It can also be incredibly rewarding, watching your child reach milestones (even if they are delayed), overcoming an obstacle or making a new friend.
To help you navigate the bumpy parts of the ride, there is wisdom to be learned from talking to other parents, healthcare professionals and educators. Take it from a mom raising a child with special needs — you are not alone and there are some ways to smooth out some of the bumps in the road.
Here are eight tips to help you raise a kid with special needs.
1. Get clear on the diagnosis
Crystal clear. Know (and understand) your child’s diagnosis, what it means and how it impacts your kid. Most kids will have more than one diagnosis. How does each diagnosis impact the others?
2. Know your team captain
Who is the person that’s the lead for your child’s care? Is it a family doctor, specialist or pediatrician? You need to know the one person who will review all the tests, treatments and monitor your child to put the pieces of the puzzle together. Don’t assume this person knows they are the team captain. Talk to them to get clarity and agreement on their role.
3. Understand your child’s needs
What are the main issues facing your child? This is different from the diagnosis. The needs could be difficulty with change of routine, fearful of loud noises, needing extra time to complete tasks in school. Identifying the needs helps everyone see the unique challenges your kid has (which may or may not relate to the diagnosis).
4. Identify your superpowers
How can you best support your child? Where are the areas you shine (helping with speech therapy, easing transitions, advocating clearly for your kid)? What are your weak spots (understanding complex medical information, being intimidated when talking to doctors, helping your child during a meltdown)? This will help you determine your strengths as well as see where you need support. Don’t worry — we all have weak spots and can use some extra help.
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5. Don’t go it alone
Be honest about your kid’s needs and challenges so people can see what you are truly going through. If your family and friends don’t understand (which is not uncommon), reach out and join an online support group or find a way to connect with other caregivers of kids with special needs.
6. Find your voice
How can you best advocate for your child? Do you do better advocating in face-to-face meetings or do you need time to dissect information before responding? Let your child’s doctor, teacher or therapist know your comfort zone and ask for opportunities to discuss your child in a way that you are comfortable with. Too few people ask for this.
7. Ask for help
There are going to be some rough spots in this journey. These are the times to reach out and ask for help. It can be as simple as getting someone to pick your kids up from school, having someone go with you to a medical appointment to help entertain your child so you can hear the information or asking for help with meal preparation during a, particularly hard time. You will be surprised how many people will come out to help you — if you only ask!
8. Celebrate successes
You and your kid deserve to celebrate. Pause and savor the sweet moments like when your child is able to say a word clearly, transitions to an activity without a meltdown or goes to bed without drama. For the big successes, make it a family celebration. For the smaller ones, pat yourself on the back and be grateful for the moment. And remember this moment during the rocky patches, so you don’t forget there will once again be moments of success.
Find out more tips from Cynthia in her book "Your Child's Voice."