(AKA: the stuff I wish someone had told me upon navigating my children’s Neurodevelopmental diagnoses, which no one ever did because no one seemed to know)
*All words marked by an asterisk are defined in the attached glossary.
By Danya Maloon, LMSW, LSSW, MAT
- Most people have no idea how hard it is. Try to seek out a community of people parenting *neurodivergent (ND) children.
People are generally well-intentioned. They may try to offer comfort and empathy. Try the best you can to accept the love and understanding they are trying to offer. However, you may also come to the realization that your friendships and your community may change, may grow smaller, may reconstitute itself. You must try to ground your child’s experience and peer relationships in the higher support needs community. You will befriend the parents of these children. You will come to understand one another in ways that parents of *neurotypical children cannot. - You may mourn. Allow yourself the space and time to process what you are feeling. Try not to feel guilty. Grief and love can exist simultaneously. You may be experiencing a dramatic shift in your conceptualization of parenting and the future.
The time after your child’s diagnosis can be an emotionally fragile time. Please try to take care of yourself. Try to invest in your relationship with your partner/your child’s other caregivers, be they grandparents, uncles, aunts, or close friends. Your instinct may be to go it alone and isolate. Try to resist this impulse. Invest in your own therapy. Find a babysitter and take yourself to dinner. Watch Hallmark movies. Figure out what gives you pleasure and pursue it. - Your child is not giving you a hard time. He or she is having a hard time.
In the words of Dr. Ross Greene, creator of the Collaborative and Proactive Solutions model, children “do well when they can.” No child chooses to act out, destroy property, isolate themselves from people, and struggle in the classroom. That child has skill deficits and unmet needs. To the extent that you are both capable, try to partner with your child to identify the unmet need and, working collaboratively, try to meet the need. Though the *CPS model works for neurotypical children, it is particularly helpful for neurodivergent children, who may have sensory, speech, sleep, feeding, and *interoceptive/proprioceptive challenges that make navigating environments—even the home environment—uniquely challenging. - What do lagging skills in ND kids look like?
The cognitive, physical, and emotional development of most ND kids is often asynchronous, which means these children hone some skills early and others much later than their peers. This might mean you have a very bright kid whose grades are poor because they lack working memory skills or have lagging skills around executive functioning. Or you will have an early athlete, who completely lacks the social skills required to play on a team. For some ND people, these skills deficits become less significant with growth and cognitive development. For other ND people, their skills levels will always be lopsided. - So, what do I do when they won’t listen?
Body Double them (keep them company, or model skills WITH them). Accommodate them. Reduce expectations. Encourage your ND child to teach YOU how they accomplish things (it might help you to understand how they think, when things are tough…or reduce their anxiety by putting them in control, when they need agency or validation). Arrange opportunities for them to feel SUCCESSFULL and VALUED. - Not all resources are created equally.
There are a lot of resources on social media that can be tremendously helpful, but please try to seek out neurodiversity-affirming creators; content created by autistic adults is particularly helpful. These people can help you understand what supports and strategies will be most beneficial to your neurodivergent child. - Not all providers are created equally.
Please try to seek out providers who are neurodiversity-affirming. If your child is formally diagnosed by a psychologist, the doctor’s report will usually recommend *ABA. Though the choice is up to you and your family, it is worth noting that many adult autistics report that ABA (or any other kind of *compliance-based therapy) felt abusive to them and invalidated their need for bodily autonomy. Moreover, your child DOES NOT need therapy just because they are neurodiverse. They may, however, need therapy for certain areas where they require additional support. For example, does your child have an expressive or receptive language delay? Do they struggle with *social pragmatic language? Speech therapy may be indicated. Do they struggle with interoception, meaning physical sensations in their body? Do they struggle with physical coordination and physical dysregulation? Occupational therapy may be indicated. Do they struggle with emotional regulation and impulse control? Play therapy may be indicated. - You CAN make demands of your child’s school.
Once your child is formally diagnosed (and even before), you can demand services from your child’s school in the form of an *IEP or 504. The public schools, especially in the Forsyth and North Fulton areas, offer an incredible array of services for higher support needs students. You may need to hire an *educational consultant or advocate to gain access to these services. These people will interview you and your child and read your child’s records. They can attend any meetings with you. This is a worthwhile investment. You can begin to access these services as soon as your child turns 3. If your child is enrolled in a public school with an IEP for one year, they are entitled to *SB-10 funds, which will offset the cost for private schools that accept these funds. - You are so strong.
Parenting a neurodivergent child is hard work. You can do this work. - You will become your child’s advocate.
Even though you might not be able to imagine what that looks like. Doctor’s visits, therapy visits, home-based programs, school-based interventions, dietary challenges and modifications, educational programming. You will see your child through all of it. - You will develop a new kind of gratitude for small victories.
The first time your child makes a new friend or sleeps through the night in his own bed or doesn’t have a meltdown in public or makes it through the school day successfully, you will feel so gratified. As your perception of what you had imagined parenting to be shifts to what your parenting experience currently is, you will find opportunities for gratitude. Make these moments matter as much as the moments where your child struggles. Allow them to matter as much. This is the child you have, and they are just as precious and just as worthy as every other child.
GLOSSARY
- ABA-Applied Behavioral Analysis
A therapy frequently prescribed for autistic children predicated on the notion that reinforcing certain behaviors will lead kids to repeat those behaviors. The method frequently uses punishments and reinforcements to promote behavioral change. - CPS Model- Collaborative and Proactive Solutions
Created by Dr. Ross Greene, Collaborative & Proactive Solutions (CPS) is the evidence-based, trauma-informed, neurodiversity affirming model of care that helps caregivers focus on identifying the problems that are causing concerning behaviors in kids and solving those problems collaboratively and proactively. - Compliance-Based Therapy
Compliance-based therapies often focus on compliance over connection. They use reward and punishment strategies and withhold desired items) until the child complies and reward the child when they comply. - Educational Consultant
Sometimes called an advocate, an Educational Consultant is a person, usually well-versed in disability law and special education, who can assist families with IEP/504 meetings within the public school system as well as help families locate alternative private school settings. - IEP-Individualized Education Plan
Part of the preK-12 public education plan, the purpose of an IEP is to lay out the special education instruction, supports, and services a student needs to thrive in school. Before your child receives an IEP, he or she will be assessed by a school psychologist. The IEP is constructed with a team, which includes parents, teachers, special education specialists, therapists, and the school psychologist. - Interoception
Usually defined as the sense that allows us to answer the question, “How do I Feel?” in any given moment. - Neurodiversity
Neurodiversity is the viewpoint that brain differences are normal and an inevitable aspect of the human experience. - Neurotypical
A person whose brain functions are considered typical or socially normative. - Proprioceptive
Your body’s ability to sense movement and action. - SB-10 Funds
Parents of students who receive special education services may request to transfer their child to another public or private school in Georgia provided that their child has an IEP and has been enrolled for a full academic year in a Georgia public school.
Parents who are interested in transferring their child to a private school in Georgia may be able to take advantage of a Georgia Special Needs Scholarship. These scholarships provide funding that can be used to offset tuition costs at participating private schools in the state of Georgia. - Social Pragmatics
Otherwise known as social communication disorder (SCD) is characterized by persistent difficulties with the use of verbal and nonverbal language for social purposes.