A few nights ago, after my daughter went to bed, I was scrolling through Facebook and saw that one of my favorite radio personalities, Phil Inzinga, had posted a video of his son Max (also known as “The Freckled Avenger”) explaining what it is like to have autism. I watched, intrigued, because I had honestly wondered before what the life of an autistic child must be like. Max honestly couldn’t explain it because, as he said, “It feels normal because I’ve had it all my life.” He did go on to explain that he has symptoms like staying up for up to four days at a time and that he has, “tics,” (defined as: a habitual spasmodic contraction of the muscles, most often in the face or, an idiosyncratic and habitual feature of a person’s behavior) and I wondered for a moment what it is like to be in Phil’s shoes:: How does one handle a child that cannot sleep for four days, or, as Max puts it, does “things differently”? After I shared the video on my Facebook a friend of mine, who’s child is also on the Autism Spectrum, reached out to me and asked if I could write a blog post for how to help families with children who have special needs. Obviously I thought it was a great idea! However, I do not have children with special needs, so I needed to reach out to those who did for answers. I asked my friends Bonnie and Emily as well as Phil Inzinga about their families, their children, what life was like for them and their families and above all – how we as a community could help. Their answers moved me to tears and I am very happy to share my interviews with them with you.
- Tell me a little about your family; what do you and your spouse do and how many kids do you have?
Emily: “I’m 25 and Steve my husband is 29, I stay home currently to care for Charlie but I do some home-based work on the side. Steve works outside of the home for 12-14 hours a day in the lawn business right now. Charlie is 3 and is currently an only child, we have two dogs and live in the suburbs!”
Bonnie: “My husband and I will have been married 5 years in November and our sweet boy turns 3 in November. My husband is active duty in the air force and I am a stay at home mom. Jack is the only child we have so far. We decided waiting for a few more years would be best before we decide to have any more children. For me, as much as I would love to have another baby, I feel it would be unfair to Jackson and to the new baby. I feel like Jack needs all of our attention and so much more.”
Phil: “I’ve worked at Cumulus Radio in Oklahoma City for the last 12 years. Currently I am a co-host with The Morning Animals on 98.1FM WWLS The Sports Animal. I am also a co-host on The Inzinga & Spinozi Afternoon Show on 96.9 BOB FM. My wife Sharon is an Assistant Vice President, Mortgage Servicing Compliance Manager at MidFirst Bank. We have 2 children Maggie (age 17) and Max (age 10).”
- Tell me about your child and what are their special needs?
Emily: “Charlie’s current diagnoses are Spastic Quadriplegic Cerebral palsy, Epilepsy, Cortical Visual Impairment, Gastroparesis, Global Delays, Autonomic Dysfunction, non-verbal, non-ambulatory, 100% fed by gastronomy tube, aspirates on thin liquids / foods, Bronchiopulmonary dysplasia (preemie lungs), and poor immune system. Charles was born at 26 weeks weighing 1 lb and 6 oz due to developing preeclampsia and severe HELLP syndrome. He also appeared to have IUGR and the placenta was ruptured at delivery. He developed two brain bleeds on the left and one on the right (IVH) and those bleeds resulted in the development of PVL, which is the cause of most of his disabilities. All around though he is always happy and active in his own way, he enjoys interacting with adults and petting animals, bouncing in his jumper and attending preschool!”
Bonnie: “Jackson was diagnosed last year. He is only a few short months away from being 3 years old. His official diagnosis was PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) and sensory issues. In my personal opinion, he has SPD (sensory processing disorder) but that is not a term they really use in much of the medical community just yet… its not very widely recognized. “Sensory issues” tends to be the general term they use for that I guess. Since he received his initial diagnosis, they redid the DSM5 (the manual full of any type of “mental illness” that doctors get their diagnoses from and the manual that insurance companies use for billing and codes and all that). They took out PDD-NOS, any type of PDD diagnosis actually; they took out Asperger’s, anything like that. See, those were essentially “umbrella terms” for ASD (Autism Spectrum Disorder). They changed all of those and are just calling all of them ASD and base it on the level of severity is what I understood. What ASD is, well…. it depends on who you ask. The definition, I believe, is that ASD is given as a diagnosis to anyone who meets the majority of classic autism symptoms, but since not ALL of the classic symptoms are there, they don’t get a diagnosis of “full blown autism” (is basically how I put it). So, going back to “it depends on whom you ask”… well, I have heard others with children who have ASD just say, “Yes, my child has autism.” Or you get “No, my child has Autism Spectrum Disorder.” So it just depends on whom you ask.”
Phil: “Our son Max was diagnosed on the autism spectrum in the first grade. We had noticed that he was not developing his social skills at the rate that other children his age were and he was really struggling with schoolwork. We knew he was highly intelligent, but his writing, schoolwork and peer interactions were not reflective of our thoughts. Max would put his head down in class, not make eye contact with anyone, would have meltdowns, etc. We were constantly getting calls from school for behavioral issues and then we discovered he spent almost an entire school year sitting in the hall because he was disrupting the class. This certainly was an impetus to us seeking outside assistance in putting a name to what was going on with Max. Once he was diagnosed, his school rapidly came together and we worked together as a team to ensure he had the supports he needed and he began to blossom; he’s our quirky little genius! “
- How does this affect your family?
Emily: “Such a large question! It would be easier to say what areas of the family this doesn’t affect which actually at the moment I can’t think of any. It literally affects everything from finances, emotional connections, down to simple outings. We have to change and adapt to everything for Charlie for example my parents are thinking of purchasing a new boat for everyone to enjoy and even though it is not ours financially they decided to go with a larger boat that can fit an adaptive lift and an interior cabin with air conditioning to keep Charlie comfortable. They didn’t have to do that but that’s what my family constantly does. We have to think far ahead and always about Charlie. How will this effect Charlie; how will this help Charlie? Special needs families have a higher divorce rate than any other type or group of married couples out there. It is exponentially harder to keep a marriage alive and healthy when your life now revolves around the health and well-being and future of a child that comes with a bunch of unknowns.”
Bonnie: “Both the ASD and sensory issues affect his daily life. One of the things I cannot stand to hear is, “Well at least he isn’t very severe…” see, Jack lacks a lot of independent skills that just about all children have at this age. He cannot dress himself, he has texture issues and he will only (yes, only) eat Stage 2 baby food and he drinks a ton of Pediasure, he cannot/will not feed himself (although a few days ago he did for the first time and it was AMAZING!) he cannot put himself to sleep… stuff like that. So it really does impact his (and our) life daily. So that’s why it makes me a little crazy when people say that. Yes, it does have a major impact on our lives, but since he seems “completely normal” people say those things. I get that all the time. Also “he’ll grow out of it.” No, people. He won’t. He will learn to cope with therapy, but it will always be there. Currently he is in feeding therapy, occupational therapy, speech therapy, and ABA (Applied Behavioral Analysis) therapy. They are helping so much.”
Phil: “For us, his parents, it certainly helped us to be better parents to not only Max, but our daughter, Maggie, too. His diagnosis and all of our participation in subsequent therapies (parent child interactive therapy, Parent Directed Interaction, cognitive behavioral based therapy, etc.) has had a profound effect upon all of us and has facilitated our growth as empathetic human beings! We have taken what we have learned and try to help others. We have certainly had our moments of despair (usually wrapped around some particularly rough meltdowns); but, we take our turn and are supportive of each other. Our daughter, Maggie, has become an advocate for special needs kids; her brother’s diagnosis has had an inherent effect upon her development and growth. She is not your typical 17 year-old girl. She is wise and mature beyond her years and is planning on making a career out of helping others in a similar situation by pursuing a degree in occupational therapy. We couldn’t be prouder of either of our kids! ”
- What is your biggest struggle?
Emily: “Our biggest struggle honestly is between two things. Finances and the What-Ifs. The system is designed to keep you just above water but never treading or overcoming the flood. Without financial assistance you would have to be a millionaire to afford all of the medical and equipment expenses. If you choose to take the job that pays a little more so that you might hope to pay the bills on time, you’re faced with the reality that now your $6000 a month in prescriptions might not be covered. So you take the job that pays less and you keep your benefits and you struggle to pay the bills each month but at least you know your child’s health is not endangered. The what ifs are also killer: what if he never walks, what if he never talks, what if someone hurts him and he can’t tell me? What if he always requires constant care? What will he do when we die? The list goes on and on and you just have to try and focus on the here and now and make time to plan for The What-Ifs when you don’t have so much on your plate.”
Bonnie: “Our biggest struggles are dealing with the meltdowns, the behavioral aspects, and his anxiety. It is heartbreaking to watch him struggle when he does. But he is so strong and so smart and so loving. He is amazing and we can do this. He’s come so far already. Aside from his special needs, he’s a totally normal goofy boy.”
Phil: “Our biggest struggle has been regarding finances. In the state of Oklahoma, private insurance carriers are not required to cover treatment for Pervasive Developmental Disorders (including Autism), Down Syndrome, and Cerebral Palsy, as they are considered both developmental and/or chronic in nature! Oklahoma is 1 of 13 states in the United States that does not require private insurance to cover PDD treatments; OK is 1 of 6 states in the United States not currently pursuing autism insurance reform. Medicaid in OK does cover some treatment for these diagnoses, but we fall into that glorious loophole of not qualifying for Medicaid. Applied behavior analysis (ABA) is considered the standard of care for autism treatment, but we can’t really afford this treatment, at this time; this is our biggest struggle to date!”
- Are there any foundations, charities, or support groups that help you?
Emily: “Honestly I am only apart of a few Facebook groups that offer support and understanding and a safe place to vent our frustrations without feeling judged. There are lots of local groups for parents but most all of them are associated with a faith based organization and make me feel uncomfortable as if they want to pray away your child’s diagnosis or focus the whole meeting on bible studies. Don’t get me wrong, I appreciate faith and prayers but sometimes you just have to be realistic and perhaps you want to meet with a group of moms who are just as worn out as you, have a nice glass of wine and a good cry.”
Bonnie: “Sooner Start (and every other state’s early intervention program) is definitely a blessing. If you don’t know about Sooner Start, (or early intervention programs in general – Sooner Start is Oklahoma’s) they evaluate your child and if you qualify for services then a therapist (whatever kind the kiddo needs… speech, etc.) will come to your home once a week to work with your child and the state pays for it. They work with kids age 0 to 3. Also, thanks to Andrew being in the military, we have amazing insurance. They have the EFMP (Exceptional Family Member Program). So far all of Jackson’s treatment has been covered. He has an amazing group of therapists here (in Colorado).”
Phil: “Absolutely! When Max was first diagnosed, we did not know where to turn for information and guidance specific to the great state of Oklahoma; fortunately, Max’s doctor referred us to AutismOklahoma.org! AutismOklahoma.org has been invaluable with providing information, peer support and ‘tips and tricks of the trade’. ”
- How can friends and family best support and assist your family?
Emily: “This is also a tough one, I would say offering childcare is a HUGE help since it is so important to take some time for yourself to re-group and gather your thoughts or perhaps find your sanity. But don’t be upset if you get turned down for childcare especially if the kiddo is medically complex. Sometimes you have to gain the trust that helps us realize our child will be ok in your hands while we are away. Help us raise awareness for the things close to our hearts, organize events or fundraisers for a piece of equipment we may not be able to afford or towards the cost of bills, etc. We don’t like asking for help and we don’t like acknowledging that we simply can’t provide everything our child might need. Share knowledge, do some research and help us inform the masses about our wonderful kiddos so that maybe one day the world will function with us instead of against us. Just listen! We’re just like every other sleep deprived mama out there, we’re tired, our kids are on our last nerve, our houses are a disaster and sometimes we just need a good vent session because on top of all that we have so much more weighing us down. We don’t want or need pity just understanding that life is hard and it isn’t fair and that it’s ok to have an ugly cry fest without looking partially insane or ungrateful. Last but not least just be there. When you see us struggling step in and offer a hand, when you see our marriage falling apart offer to help in any way you can so that we might be able to pick up the pieces and put it back together. When you know we’ve had a series of appointments, yet we’ve been unusually quiet, don’t be afraid to be a friend and a shoulder to lean on. We may not always want to rehash the day or the week or talk about it but just someone recognizing that it’s hard is enough.”
Bonnie: “Don’t say stupid things. I’m totally serious. Instead of saying things like “Well he’s not THAT bad, you’re lucky! It could be worse.” Or “Maybe you should just spank him and he would stop being a brat.” Be supportive and have an open mind. Tell them they (the parents) are doing a good job. Ask questions about the child’s special needs. I actually enjoy talking to others about it and giving them some insight. Instead of glaring at the mom whose child is screaming and having a meltdown, (that the person might think is just a tantrum but it’s definitely not) just smile at them or ask how you can help them. Realize that “regular” activities like going to lunch at a restaurant with the parent and child actually isn’t as simple as it sounds so cut them some slack or be understanding if they decline. But you know… I actually feel like what I said about the supportive and understanding thing should apply to all people, with special needs children or neurotypical children. People in general are so rude, condescending, and judgmental. People just need to be nice.”
Phil: “Friends and family can best support us by educating others about Autism, what is and what isn’t true (kids on the spectrum are not RainMan, that function ranges from low functioning to high functioning, and wherever they land on the spectrum they have their own unique set of struggles and challenges, and that if you’ve met one person with Autism, you’ve met ONE person with autism!), and by reaching out to their lawmakers and companies they work for to request coverage of Pervasive Developmental Disorders in the state of OK.”
- Is there anything else you would like people to know about having a child with special needs?
Emily: “That it’s hard, it’s full of surprises, let downs, what ifs, amazing break-throughs, first times and new skills that you want to celebrate with everyone, extremely difficult decisions, headaches and unspeakable amounts of love. There is a poem called Welcome to Holland. It takes the words right out of my mouth. Having a child with special needs is everything you thought it wasn’t. You will do things and face things you never thought you could handle and you’ll never know how you do it, you just know you did it and you survived and you’ll do it all over again in a heartbeat because you love your child more than anything in the world.”
Phil: ” Overall, we wouldn’t change a single thing! Personally, we’re not interested in a “cure” because we wouldn’t have him any other way than he is! Additionally, I would want people to know that sometimes, our kiddos are unable to care for themselves after they become adults and we need more and improved services for adult children with special needs; especially as the parents themselves age and become less able to provide the necessary care for their loved ones.”