Autism Q&A



Meet the moms 

Jennifer Pineo is a parent to two children with autism, Logan, 13 and MJ, 9.

She is a project coordinator at New Hampshire Family Voices, which provides free, confidential services to families and professionals caring for children with chronic conditions and/or disabilities.

 

Sarah Aiken has a son with autism. She is director of policy and planning at Community Bridges.

Community Bridges advances the integration, growth and interdependence of people with disabilities in their home communities.

 

Lori Noordergraaf has a 21-year-old son with autism.

She is an education consultant at the New Hampshire Department of Education, Bureau of Special Education.

 

Question: Based on your experiences, what do you think are the first steps parents should take after their child is diagnosed?

Pineo: I remember with both of my children having an equal sense of fear and relief. I was relieved that we had some answers and directions we could go in. I was afraid because it was a lot to take in and figure out. Families are often given an overflow of information at diagnosis and it can be hard to weed through. Figure out your system of support first. Who are the people you need around you — family, friends, and professionals — to navigate the system? Every child and family has unique needs and it is important to keep that in mind as you are working through the recommendations and information you are given. We focused on ensuring my kids were happy and being kids, so do what is best for your family and your children.

Aiken: I would encourage any parent to reach out to their pediatrician, NH Family Voices, their local area agency and the school system. These are the pillars of support for health, school, services and support.

Noordergraaf: It would depend on how old the child was when they are diagnosed. In my son’s case, he was diagnosed in the late 1990s, and there was not a lot of information around at the time. I went to conferences, workshops, and purchased all sorts of books to read about autism and interventions. In addition to getting as much knowledge and information for yourself about autism as you can, if a child is diagnosed when they are under 3, the first thing I would advise would be to get involved with Family-Centered Early Supports and Services at the Department of Health and Human Services website at www.dhhs.nh.gov. If the child was in the preschool age range or school age, I would contact my school district to let them know that I had a child with a disability and make a referral to the school district for my child. Be sure to provide copies of all the assessments and documents regarding the diagnosis, so that the needs and services could be discussed and considered for the development of an Individual Education Plan.

Q: What is the biggest challenge you’ve faced as a parent of a child with autism?

Pineo: Figuring out the coordination of care for our family. I have two children and navigating through the system as a family can be overwhelming to get everything done and to keep your head above water. There is often a lot of trial and error in figuring out with will work best for Logan and MJ. We often have to try different interventions or activities a few times to see if they will work. It may not work the first time but it may work on the second or third try. This can be hard because you feel like you are trying to run through a brick wall. Just keep trying and eventually you will break through.

Aiken: The constant struggle to get help. The school system can be tricky to navigate, the “new language” of acronyms is a confusing alphabet soup, and figuring out who does what and how to make sure they actually do it. Also for me, it was hard to determine what “normal” was. Is this a behavior because he is in the terrible two’s, or is this a manifestation of his disability? Trusting my gut became very important.

Noordergraaf: The biggest challenge I’ve faced as a parent of an autistic child is when he was younger and unable to consistently communicate with words, he would very often have a “melt-down” in a public situation. Even to this day, he sometimes struggles with finding words to communicate something — especially when he is feeling anxious, overwhelmed, or under pressure to perform/speak — so he tends to talk aloud in phrases that he may repeat several times. In recent memory, our family had bought tickets to the Boston Pops Christmas concert, as music is something my son enjoys. Unfortunately, my son also enjoys singing along. Apparently, the “typical” crowd at a Boston Pops concert does not appreciate audience participation, as several folks nearby stared us down until we felt the need to request to move our seats away from the crowd. This not only ruined the evening for my son, but also has discouraged him from wanting to attend any type of theater or musical event again. Educating the public who are staring and making character judgments about you as a parent in a moment when you are trying to work with your child on providing new experiences, or work on what is happening and why it’s happening, is a next to impossible task.

Q: In what ways has parenting your child surprised and/or rewarded you?

Pineo: How much can be communicated without saying one word. Logan has mastered the art of silent sarcasm. He has a great sense of humor that he can often get across with a giggle or look. It is fun to see the differences in both of my children. Although they both have an autism diagnosis, they are both very different children with different needs.

Aiken: There is nothing in the world I would rather do than be a parent to my son. I cannot imagine him not being exactly who he is today, who he will be tomorrow. That is not to sugarcoat the trickiness of having a child with a disability, but I have seen a whole new world through his lenses and I am so grateful for it. Specific to me, I love the people that I have met through this community. Some of the women I am closest to in the world are fellow moms. I can’t imagine my life another way.

Noordergraaf: As a now almost 21-year-old man, my son continues to remind me that learning doesn’t stop. He continues to learn new skills and grow. He teaches me patience and understanding as well as the importance of advocacy and explicit teaching methods. His sense of humor and ability to show empathy reminds me every day that everyone has strengths and gifts to offer. No one should be confined and defined by a label or diagnosis.

Q: How can a parent best advocate for their child with autism?

Pineo: Be persistent and keep an open mind. Continue to learn and grow as a parent and person. There are a lot of trainings and conferences that are offered for families that support families in advocating, such as the Parent Information Center Volunteer Advocate training. Attending the trainings and conferences also helps you to connect with other families, professionals and resources.

Aiken:  Be organized and persistent. They don’t call us ‘warrior moms’ for nothing. Learn the systems, understand the laws and rules. Advocate whenever you can. But remember that sometimes the best advocacy is teaching your child to advocate on his/her own.

Noordergraaf: Become familiar with the special education laws for the state in which you live, as well as federal regulations, and use the laws and rules that are in place to support your child (see information box for resources).

Q: Do you have a support system? Where can parents seek out support for themselves and/or families?

Pineo:  I have a tribe of friends that get what it is like to parent a child with a disability. We support each other, vent, and we laugh and have fun. If you are able, find people that can support you as a friend and be there to listen. We have also been lucky enough to have great family nurse practitioners that have worked with us. They have been great at helping us address medical/behavioral issues as they arise and are great at looking them through the lens of what will work for our family.

Aiken: My best friends are fellow moms of children who have autism or another disability. I found them through being involved in issues related to autism, the system, and through trainings or workshops. I rely on them for anything and everything.

Noordergraaf: I have a small support system that consists mainly of family members. At different times in my son’s education, there were teachers and special educators who were part of the support system. Now that he is older, finding a solid support system that is not family is more difficult.

Q: If you could give parents who have child with autism just one piece of advice, what would it be?

Pineo:  Keep your sense of humor. Take time for yourself – and when you do, do not feel guilty about taking that time because it will help you to stay focused. Trust your gut and intuition.

Aiken:  It is important to remember that your child is no different now that they have a diagnosis than they were an hour before that diagnosis. A label doesn’t define you or your child.

Noordergraaf:  Always have high expectations. Never give up!

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