Today’s post is brought to you by Rocky Parra. Rocky is a long-time API board member. She and her husband Brett, a local urologist, have four children: BethAnne, Peyton, Walker and Matthew. Matthew is on the autism spectrum and is the subject of Rocky’s personal blog, Mrs. Mommy Writes. Rocky tries to give readers insight on one family’s experience with autism in an effort to encourage awareness and acceptance.
Dear Family of the Newly Diagnosed,
Almost 10 years ago exactly Matthew received his Autism Spectrum Diagnosis; some days it seems like a lifetime ago, and others like yesterday. I remember sitting in three different doctor’s offices in a 10-day window, and all three concluded, “pervasive developmental disorder-not otherwise specified–”in other words, Autism Spectrum Disorder.
Looking back, it felt like I was on the outside looking in, watching a movie of my life I hoped the doctors would have a surprise diagnosis that was easily treated. The moment those words registered in my mind, I cried, and then I experienced overwhelming and unexpected sense of relief. Now we could access services, we could develop a treatment plan, we could educate ourselves and our family on how to help Matthew grow into the best version of himself, and we could stop wondering what we were facing.
Right now, you might be reeling, but the ship will steady. The rough seas will be interrupted by periods of calm, but you never completely relax. You likely feel alone at times, but you are not. You may be afraid==of what lies ahead, of making the wrong decisions, of how autism will change your life. I will not lie and say that it will be easy. It is not easy, but parenting never is. Cut yourself some slack, and take the time to process that while your child might not follow the path you previously planned for them, that can happen with any child, not just autistic ones.
Read that last part again, “that can happen with any child, not just autistic ones.”
Things happen in life that change the path of a child: disease, accidents, poor choices. We adjust the plans.
Lean on your spouse or your partner. You each may approach autism differently. You will have different fears or concerns. You will have different strengths when working with your child or young adult. Any challenge that arises with children, not just autism, can be hard on relationships and marriage. Do not let those challenges overshadow your shared your love for your child and your desire to see him (or her) become the best version of himself. Work together!
When you are ready, assemble a team. A team that includes doctors, therapists, teachers, family members, caregivers, other parents of older, autistic children or adults. and friends. All of them play vital roles. Listen to them, do your homework, and make informed. educated decisions. Listen closely to the voices in your head and in your heart. Sometimes you will agree with the professionals, and sometimes you will not. Make sure that when you disagree with them, that you have a basis for your dissent, and it is not because you are in denial. You will experience both.Some people will stay on your team, while others will walk away. You will laugh and cry with your team, and if you pray, you will pray with and for your team.
Find a parent or some parents of children slightly older than yours and pick their brains. Even though we all know that every autistic person is different, there are lessons to be learned from those who have gone before you. Ask them for recommendations, ask them what they would do differently, ask them what they would repeat. They know the road you are walking. They will likely be happy to help. They will become your friends.
While you make new friends in the autistic community, try to maintain your old friendships. Some of your old friends will disappoint you, probably not because they do not care, but because they do not know how to help or are afraid of saying the wrong thing. It is okay, because other friends will surprise you; they will not just stick around, they will step into your new normal and advocate for your child. They will teach their children how to accept your child, they will invite you and your child into their homes, and they will lift you up.
If you have other children, know that while they may struggle at times, their lives will be enriched by their sibling with autism. They will learn that life is not fair. They will learn valuable lessons about hard work. They will learn to advocate for others. They will learn to find joy in little things. They will be the teacher at times and the student at others. They will play with toys they have outgrown and watch movies they do not like. They will love fiercely.
Presume competence in your child. Think about what you say in front of and in hearing distance of your child. You may think that he does not understand you, but do not risk it. We have learned that Matthew understands and takes in far more than he immediately communicates back to us. We also learned that just because he is not looking does not mean he is not listening. As his communication skills have improved and grown more sophisticated, he verbalized things he remembered from years past. So far, it has not been anything I was ashamed of saying or doing.
Progress may be slow, and your child may experience periods of plateau or regression. Never give up. Take a step back and a deep breath and go to Plan B. Plan B could involve a new school, new medications, new therapists–just not all at the same time. Always have a Plan B. Help your child to overcome his or her challenges, and look for opportunities to improve his strengths. Your child will change you and challenge you in ways you cannot imagine.
You may do things you said you “never” would. I pray that when you have been on this road as long as I have, you will be grateful for the lessons learned, the experiences shared and the unconditional love you now know how to give and receive. Hopefully, you will take the chance to reach out to others who are new to the journey and give them a hand up.