The following resources can help you get started in your journey with Down syndrome, and provide you much needed support as you continue along your way.
1. American Academy of Pediatrics: Health Supervision for Children with Down Syndrome
As a new parent to a child with Down syndrome, it’s easy to feel overwhelmed by what you don’t know. What is your child at risk for, what questions should you be asking your doctor, what labs should you be running at each visit to keep your child’s health on track? Rest easy. The American Academy of Pediatrics (AAP) has you covered through age 21. They have compiled a list of best practice assessments, by age, for children with Down syndrome. Appendix 1 even has a handy chart to tuck in your diaper bag so you always know what to ask about at your next doctor visit. If your doctor is unfamiliar with these guidelines, it may be time to find another doctor, as it speaks to how informed they are on the issues that can make or break your child’s health (see #2 below).
Check out the AAP guidelines by clicking HERE.
2. A Well Respected Pediatrician and Pediatric Specialists with Experience Working with Down Syndrome
Choose doctors who know children. Pediatric doctors have tools designed for smaller bodies. They can navigate and are more familiar with the workings of smaller bodies. They know more about the relevance and implications of treatments for kids. So start by finding a well-respected pediatrician, and choose a pediatrician who knows Down syndrome. This is one of the most important assets in your corner. For special issues, have him or her also refer you to the best pediatric specialists who know Down syndrome: a pediatric cardiologist, a pediatric Ear, Nose and Throat doctor, a pediatric ophthalmologist, etc. Accessing a solid pediatrician and pediatric specialists experienced in your child’s condition will pay dividends your child’s entire life. Doctors who don’t have experience with Down syndrome are apt to waive irregularities off as “normal” for Down syndrome, when they aren’t normal at all. Or will “bandaid” problems rather than understanding and treating the cause. A lack of understanding about the details of Down syndrome can lead you down the wrong medical path, with health consequences. Even if you have to travel, it’s worth it for quality doctors. And your insurance company or other programs may be able to help reimburse for travel expenses.
3. Medicaid or Katie Beckett Medicaid Waiver, Social Security
Caring for a child with special needs is much more expensive than most people realize. Medicaid coverage can therefore be critical. It can provide low income families with insurance/health care for their child with special needs, where there isn’t any health coverage or can’t be afforded otherwise. However, children with long-term disabilities may also be eligible for Medicaid services even if their family income is above Medicaid federal poverty guidelines. This is called a Katie Beckett Waiver. Ask local parents of children with special needs what Medicaid and Katie Beckett look like in your state for children with disabilities. Systems are difficult to navigate if you don’t have any idea what you’re eligible for, so ask around to get started. And then inquire with your local Department of Health and Welfare directly. Having access to Medicaid can greatly increase your opportunities for care, and ultimately, help to optimize the health of your child. Having Medicaid or Katie Beckett also open doors to other services for your child, for which Medicaid is a prerequisite. But the health coverage alone is priceless, as children with Down syndrome typically experience a greater array of health problems that need monitoring their entire lives. And are very difficult to be afforded otherwise. Some states have wait lists, so start pursuing this resource early on.
If your family income is low, your child with disabilities may also be eligible for Social Security Income (SSI) payments until age 18. This can be a huge asset to affording therapies, medical procedures, medications, etc. At age 18 your child is considered an adult and the family’s income is no longer a factor in determining SSI payments. Now an adult, your son or daughter can receive adult SSI aid on his or her own, because of his or her disability.
4. Early Intervention Programs
Every state is required to provide early intervention services to families of children who have developmental delays or disabilities. These services can include speech therapy, physical therapy, occupational therapy, etc. and address gaps in skills during the first three years of life. Research has found that by intervening early, the greatest gains can be achieved. A free assessment of your child’s delays, and eligibility for services, can be obtained by contacting your state’s early intervention services directly, or by having your doctor submit a referral on your behalf. Services are free or based on a sliding fee scale, depending on where you live. Early intervention services can be a huge asset in closing gaps in walking, talking, feeding, etc. And provide much needed support early on in your journey. You’ll have a team of experts at your disposal going shoulder to shoulder with you to optimize your child’s development, and teach you what you need to know. Early intervention programs can also link you to other services that may be needed, like respite care or counseling, or help you obtain adaptive equipment that your child needs for daily living. Early intervention services are provided in home until age three.
5. Woodbine House, Topics in Down Syndrome Books
There is a series of wonderful books available through Woodbine House Publishing, called Topics in Down Syndrome. These are your go-to Down syndrome resources, and are everything you need to know about Down syndrome and various developmental topics specific to Down syndrome. They are a window into your child and explain and provide context for common struggles, behaviors, and delays. The books break each developmental milestones down in to micro steps, each with their own concrete instructions for encouraging skill building in that area to optimize growth. There are books for teaching math, reading, fine motor, gross motor skills and more. Each page is chalked full of practical and useful information. They are great companion books to traditional therapies, or as a guide for parents where therapy is not feasible for financial or other reasons. Every parent should have access to this set of books. Some libraries stock them, Amazon sells both new and used copies, or you could even buy a set to share among families in your local Down syndrome support group.
These books are all contained in the Simply Perfect Amazon Store under the Books for Parents section. Please click on the Amazon Store tab at the top of the page, or click HERE to access. Or follow the links at the bottom of this post.
6. Facebook and Online Groups
Down syndrome-specific Facebook and online groups can be a wealth of knowledge and strength. The pooled knowledge and experience of thousands of people, all helping answer each other’s questions, for free, and to also so easily accessible from home, is something pretty remarkable. There are groups that focus on medical questions, behavioral issues, school/inclusion issues, new research, targeted nutrition, you name it. Ask a question and get a variety of responses from people who have succeeded at what you are trying, have discovered a solution to your problem, know a tip to make something smoother, or just want to lend their encouragement or share your excitement. They are groups of strangers bonded together for a common good, and a pretty beautiful human story. Of course, be warned. These are predominantly places to post problems. They aren’t reflective of the typical experience. Your child will not have all of the problems you see discussed, or even a fraction of them. But there is a lot to learn by reading and asking. Here are a few such groups that you might be interested in:
- Down Syndrome Medical Educate & Share for Ds Parents
- Down Syndrome Parents
- Inclusion for Children with Down Syndrome
- Educational Strategies for Children w/ Down Syndrome
- Behavior Intervention for Children with Down Syndrome
7. Your Local Down Syndrome Support Group
Many areas have local Down syndrome support groups. These are groups of parents who get together to share what they’ve learned, ask questions of each other, research collective topics of interest, do outings with their kids, and generally be a support to each other. Parents of children with special needs are amazing. They are among the truest and dearest people you will find. And being with people who understand the path you are on, and who are helping each other to successfully navigate that path, is priceless. Local groups often have holiday parties and events to get involved with. You’ll meet children older than yours and get a glimpse into where you are headed, and you’ll meet children who are younger than yours who will remind you of what an amazing journey it has been. These people often become like family. If there is no group locally, start one! Meet monthly at a park or restaurant. Add parents to a closed Facebook group where you can talk amongst yourselves. You’ll be glad you did.
8. Other Parents
If there is no local Down syndrome support group where you are, or group gatherings aren’t your thing, find another parent of a child with Down syndrome, who you can email or call or get together with when you have questions or need to talk. They don’t even have to be local. Just someone who cares. Having a child with special needs is hard, and can feel isolating. You need to know you aren’t alone. Having someone to call on a bad day, who knows what those bad days are like, can make all the difference in the world. Try to find a parent who has a child with Down syndrome just a little bit older than yours, so they can pass along their wisdom. But any friend will do wonders for your sanity and sense of validation, and encourage you to keep fighting the good fight.
Whether it’s a formal respite program, a family member, neighbor, or someone else, find someone you trust who can be with your child while you take a break. Don’t be productive. Take a nap, read a book for fun, leave the house, do something you enjoy, have a date night with your spouse. Having a child with special needs has extra worries and stresses associated with it, and it can put a strain on you, and your other relationships. This is a marathon not a sprint, and you can’t draw water from a dry well. So be good to yourself and don’t feel guilty about it. Find ways to refresh yourself mentally and physically. So that you can come back ready to be the support your child needs you to be. Many states recognize this critical need for breaks for full time caregivers, and have formal respite programs. Some early intervention programs offer respite as well. If not, don’t be shy about asking for help from friends, at church, or among others you trust. Or have the mindset that hiring a babysitter is a medical expense, necessary to keep your family going, and prioritize it in your family budget. You’re worth it! And even short breaks, an hour here and there, can make all the difference.
We saved the best for last. The best and most important resource in your journey with your child with Down syndrome, is YOU. You are the most important person, mentor, therapist, advocate, cheerleader, caregiver and support person your child will ever have. You are amazing. Even more amazing than you can ever fully appreciate. Never forget that you are your child’s hero. Take care of yourself. Know that you are enough. Trust your gut. Love, laugh, and enjoy the ride. ©
Looking for toys and tools to encourage your child’s development? Check out The Simply Perfect Amazon Store:
Woodbine House, Topics in Down Syndrome Books
Medical and Surgical Care for Children with Down Syndrome: A Guide for Parents (this book is older)