Blog #180~Special Needs Moms, Let Go of the Guilt
Am I doing enough for my child? Should I switch to a gluten-free diet? Does my child need more ABA (Applied Behavioral Analysis) therapy? Maybe I should be diffusing essential oils? These and many other questions swirl constantly, in the mind of a parent having a special needs child. I should know after 23 years of raising my son, Nick. He has a dual diagnosis of Down syndrome and autism. Over the years, I’ve allowed doubt to creep in. You see other moms talking about intense ABA therapy, up to 20 hours a week. You hear testimonials of how a gluten-free diet helped to increase speech and decrease problematic behaviors. Then, there are the success stories and pictures plastered over social media groups. Compelling accounts of children excelling in Special Olympics, summer camps, recreational programs and the latest programs sure to launch your child new heights. There is a tremendous amount of pressure to do it all. So, you begin to question yourself as a parent. Am I doing everything I can to help my child with special needs? This is when the guilt begins to seep in. That’s, when you need to let go of the guilt.
Parenting is a balance act. The responsibilities of running a household, taking care of children and their activities along with your own personal job and welfare, can be enormous. At several points over the last 23 years, I’ve hit walls where the pressure is just too much.
At those junctures, it’s important to stop, take a breath, and re-evaluate what works for your child with special needs, and the entire family……
*RE-EVALUATE- Which treatments, therapies, and recreational programs are useful? Where are you seeing growth and enjoyment for your child? Weigh the benefits against the disadvantages of each program, treatment, and therapies that you are considering.
*PRIORITIZE- What activities are essential for my child and any siblings? Which of these activities are needs/must haves (like swimming lessons), and which are wants (like a recreational soccer program)?
*STRIP BACK- After you’ve re-evaluated and prioritized, create a new schedule that suits your family. Listen to the cues of your child, (and yourself). Is it stressful, time-consuming, expensive or sapping your energy? Has it become a huge inconvenience and unfair to the rest of your family?
Right now is a perfect time, before school starts, to take a deep look at all the therapies and activities your child and siblings are involved in. Are these programs enhancing their growth? How much time are you spending in the car, commuting all over town for these therapies and other programs? Sometimes, it’s just TOO MUCH for you child and other family members. Consider scaling back, and opt to incorporate learning activities at home. Ask your child’s therapists for suggestions on how to do this. With their help, create learning (TEACCH) activities that can be done at home. It really helped me to achieve better balance, when I scaled back, and incorporated a few of the TEACCH activities along with natural occurring jobs around the house, instead of driving all over town each day to therapies. 🙂
TEACCH (Treatment and Education of Autistic and Communication is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders.
Here are some TEACCH bins we do in our home with Nick…..
Task Strip with a highly preferred reward to work towards. Nick picks out a reward from his PECs (Picture Exchange Communication book) or AAC (Augmentative and Alternative Communication Device). He usually chooses a Sprite….
Nick get’s handed the #1 and matches to the bin and completes the activity. Once this is done he puts the #1 on the green task strip. This is repeated for all four bins. The activities range from sorting, matching, assembly, folding, and fine motor. Bins can be customized to fit the needs of an individual child. These are just a few of many Nick does. Be sure to mix in some that have a high success rate, with more challenging activities suitable for your child:
Naturally occurring activities can also be added around the house throughout the day. Examples include unloading the dishwasher, garbage/recycling, laundry, putting groceries away, cleaning counters, vacuuming, and gardening.
All these activities help to build new skill sets, confidence and independence. The TEACCH activities are also implemented by respite caregivers, which we’ve hired with the help of state waiver funding. These caregivers work on goals both in the home and out in the community. Respite workers can also help take your child to afterschool activities such as therapy, Special Olympics/ sports or swim lessons and social groups. Having respite care or hiring a babysitter, allows a parent to get a break and take time to get out and enjoy their own life.
It’s so easy to get bombarded with advice on treatments, diets, therapies and recreational programs related to special needs. As a parent, you need to decide what is useful and stop feeling guilty about doing everything single therapy and program to help your child. Do your research, weigh the pro’s and cons, and decide what works best for your child and family. Consider incorporating TEACCH activities at home, instead of running and around, and spending more time in multiple therapy clinics. Don’t allow those guilty thoughts to rob your peace, or make you doubt your parenting skills.
That’s what is in my noggin this week.
~Teresa
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Down Syndrome with a Slice of Autism 
Phenomenal post! I can’t imagine how you manage all the challenges👍 Many blessings, Joleene
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my child is also dual diagnosis and has an AAC device. he uses it at school but is not interested in it at home. he prefers to sign or just go get what he wants! I worry every day that I am not doing enough for him, that there must be some miracle out there that will one day open the world for him. sometimes I feel that I must look like some kind of nut, asking about this and that.
Try to integrate the device in small ways, highly preferred items to comment on like what to have for meals. Build from there with other activities. At home, do whatever works here it’s not always AAC device but also PECS book, signing and receptive language. Bottom line, do what works for your family.