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If I could turn back time and talk to my younger self, I would sit her down after hearing my daughter’s diagnosis and tell her what I wish I’d known as a new special needs parent. I would prepare her for the flood of emotions, sleepless nights, and never-ending worry that she’ll feel even more strongly.
Once diagnosis is confirmed, it can be overwhelming. It takes time to process the information, not to mention completing the never-ending flood of paperwork . It’s easy to get lost in what needs to be done everyday such as shuffling to therapies, doctor appointments, and specialist visits.
All of those points of contact, however, never prepared me for what special needs parenting would be, how it would impact our everyday lives, or what tools and resources I should seek.
Furthermore, most of the information I did find was luck; I just happened to stumble upon it, and after review, wished someone had shared it with me sooner.
15 things I wish someone had told me at the time of diagnosis
1. Find your tribe
Find a support group, Facebook group, blog, or like-parents to share with and lean on, especially on bad days (and there will be bad days). The emotions you’ll feel will be heightened by feelings of guilt, lack of sleep, and overwhelm at times. Your tribe will become some of the best people you’ll know, give you strength when you need it most, and oftentimes one of the best sources for information.
2. Be careful of the modern-day snake oil salesman
There are people who want to profit off of your situation. Talk to your doctor, other parents and read peer-reviewed research before starting new interventions or strategies. Don’t get scammed. Stay away from those who promise ‘miraculous cures.’
3. Understand Medical Insurance Coverage
Learn what your medical insurance covers in the way of therapy (Physical, Occupational, Speech), specialist visits and durable medical equipment. Additionally, find out what’s available in your state, such as Medicaid. Often there are caseworkers who can help with the process. In some states, when a child has a qualifying disability, they are covered regardless of household income through waiver programs.
4. Get more Life Insurance
If you are not independently wealthy, it will be hard to amass enough money to provide for your child’s future needs in addition to your own retirement needs. Get as much coverage as you can afford. It’s easier to obtain and less expensive when you’re young!
5. Open an ABLE account or establish a Special Needs Trust
An ABLE account allows you to save money for your child without impacting means-tested government programs. Let family members know to deposit monetary gifts into this special account, or into a Special Needs Trust, so they don’t inadvertently disqualify your child for services. You’ll need help from an attorney to establish a Special Needs Trust, but this is another way to save money for your child’s future that goes beyond the saving limits of an ABLE account.
6. Get on Waiting Lists
Check your state Disabilities Services Office for a list of eligible support services such as a caseworker to help apply for SSDI (Social Security Disability Income), respite care, home care aides, and reimbursement programs for disability-related expenses. Depending on your state and available funding, wait lists could be long, sometimes a year or more, so get on waiting lists as soon as possible.
7. Apply for FMLA
If you’re working full time, talk to your employer about the Family and Medical Leave Act. FMLA is a federal program that protects your job when you need to take time off for things like your child’s medical appointments or to provide care.
8. You may need to fight for school services
If your child will be attending school, educate yourself about the process of evaluation, IEPs, 504 plans and the best ways to ensure you child gets what (s)he needs when in school. Talk to an advocate to understand your important role as their voice. Research attorneys who specialize in special education law in your area in the event you need to get legal advice or assistance.
9. Celebrate the small stuff
Children with special needs may be delayed in a variety of ways. Skill sets may be behind their typical peers. That’s OK. Look for progress, not perfection. Throw the timeline out the window and celebrate every success.
10. Person Not diagnosis
Over the years, working with different doctors, therapists and specialists, you’ll be submerged in lists and plans that detail all of the things your child can’t do. Moreover, there will be diagnoses, symptoms and a pile of ICD-9 codes a mile long. It can be overwhelming and leave you with a feeling that you’re running out of time. Keep in mind that behind the diagnosis is your child, and you are a parent first and foremost. So, spend the time, play the game, and go for the walk.
11. Insensitivity
This is a tough one to swallow, but prepare yourself for insensitivity, even from places you’d least expect it. People will stare. They will judge your parenting when they see meltdowns or other behaviors that your child can’t control. You’ll hear someone say that “everyone these days is looking for a diagnosis,” or assert that your child just needs better discipline. Don’t believe them. You are not a bad parent.
12. Your Child Understands more than you Know
Don’t talk about your child in front of him or her. Not to a doctor, therapist, teacher or other family member. Children are perceptive, and can hear you, even if they don’t respond in a typical way. Speak up when others do this as well.
13. Invitations
Because you know your child best, you’ll also know what his or her limits are for groups of people, noisy environments, and so on. Large gatherings or loud spaces can often mean sensory overload for a child who has special needs.This may mean leaving before cake and ice cream at the birthday party, or skipping the event all together. Don’t ever feel bad doing what’s best for your child.
14. You’re the Expert
You might not feel like it, but believe me, no one knows your child better than you do. Don’t be afraid to speak up to educators, therapists, doctors and even family members who have an opinion. Certainly hear out what they have to say, but feel secure in your position as a parent – the one who is there twenty-four hours each day, seven days a week.
15. MODIFY, MODIFY, MODIFY
It will be hard to find products that will meet all of your special needs, and you’ll modify. I remember sewing elastic into jeans (before it was mainstream), and creating a school calendar that included PT, OT and Speech therapies. (Get it here).
I hope through sharing this list, you’ll have a few less knowledge gaps than I did as a new special needs parent. Subscribe to Tumble into Love to get tips and tools for managing a special needs life from a special needs mom!
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