I asked Jen (previously here) to write a guest post on a topic that I have very little knowledge in and a LOT of desire to grow in: how to support parents of special needs children. I think as an immigrant church community we are just now beginning to figure out how to be there for these parents and to serve these children. And we have a looooooooong way to go. (It starts with this convention. See the bottom of the post for more information.)
Jen isn’t quite sure when she lost her mind but she’s pretty sure it’s documented in the last 15+ years of blogging at ::Meditatio::. When she isn’t chasing her son Daniel around, she loves reading, crocheting, blogging, searching to find the perfect iced vanilla latté, and spending time with her family.
WHY I AM QUALIFIED
I probably should give you some background on why Laura thinks I’m qualified to talk about this.
My son Daniel was born at 29.5 weeks when I developed HELLP Syndrome. (The story of his birth is here.) Preemies tend to have delays because of their gestation; but Daniel did not even hit milestones when his adjusted age was factored in and he was diagnosed with global developmental delays at 18 months old.
When he was 2 1/2 years old, we were at a developmental pediatrics appointment when they told me that he was very clearly autistic. My former husband was thanking God upon hearing this news because it explained so much. I, on the other hand, barely made it to the car before I started sobbing. The ADOS was administered a week later and Daniel received a diagnosis of mild/moderate autism. Appointments for glasses and hearing aids followed later that year.
Last fall, his neurologist added an ADHD diagnosis to the mix and put him on Adderall which was life-changing for him and for us because it meant that he could sit still and play for longer stretches of time and other ADHD meds allowed him to calm down at night. At 7 years old, he is *FINALLY* starting to talk, he still is not potty-trained, and he attends a special autism program for school.
Additionally, being premature means that his immune system was very compromised until he turned 5 years old and we got to know the pediatric emergency room, pediatrics ward, and pediatric intensive care unit (PICU) at UC Davis Medical Center very well in the three years we lived near Sacramento. I spent over a month of my life sleeping in the PICU and the pediatrics ward during that time when Daniel would get RSV and I still keep spare underwear, toiletries, and a 24-hour supply of my medication in my laptop bag so that I am prepared for another hospital stay if it happens. I also got to be on a first name basis with some of the attending physicians at the pediatric emergency room because of all of our trips for respiratory issues and febrile seizures.
So yes, maybe I am a bit qualified. 🙂
I am not going to lie — parenting a kid with special needs can be very hard. I frequently describe life with Daniel as having multiple children at different developmental levels combined into one child and there are days where I’m banging my head against the wall because I feel like I am failing as a mom. Other days, things go smoother than expected and I feel like I *might* actually know what I am doing.
Every kid is different and what I can tell you are things that have worked well for me as well as things that I wish I could say or could have said to people earlier in my adventures in parenting Daniel. Given that Daniel is autistic, many of my examples will involve that particular condition though they can apply to a number of other conditions that cause developmental delays.
SIX REMINDERS FOR SPECIAL NEEDS PARENTS
For the parents:
[+] It is OK to be upset when you get a hard diagnosis for your child and it is normal to feel overwhelmed. My Catholic friends talk about their jobs as parents being to help their kids to heaven and when you get a diagnosis of autism or Down Syndrome, that gets a lot more complicated. I think as parents, we want the best life possible for our kids and it is incredibly difficult when we learn that this won’t necessarily happen. We also have images in our minds of things like introducing our son to their first roller coaster or walking our daughter down the aisle. These things may still be possible, but getting to that point will be harder than it would have otherwise been.
[+] Love the kid you have. Your kid may not fulfill all your dreams for them but they are still yours. Find things to do with them that fit where they are developmentally and in terms of abilities. Daniel’s former physical therapist used to tell me that “[they] treat the kids, not their diagnoses.” Your kiddo is more than a cerebral palsy diagnosis or an autism diagnosis — they are a beautiful child of the King of Kings who is loved by God more passionately than any mother or father can love them. I can also tell you from my experience that every milestone they hit will be ten times greater than it would normally be because you know the blood, sweat, and tears it took to get there.
[+] Build a support network. This network includes not only your kid’s therapists but also people who have children with the same diagnosis. Daniel’s preschool had “Picnic on the Green” twice a year and all of the parents of the kids in the ABA (autism) class usually ended up having their play area to ourselves as the parents of all of the other preschoolers generally congregated on the other playground. This meant that we had a small and intimate group every time and it became a time to talk to each other about what worked for our kids, how we were struggling or thriving as parents, and a chance to get to know all of them better. Given how completely shy and introverted I am, I probably would not have joined a support group on my own and I appreciated having this community. Your support network should also include people who you trust to watch your kid and who are willing to learn how to work with them as well as websites for any groups that deal with your child’s diagnosis. I personally found that the Facebook for the MIND Institute was a really good place to go to for information on how to work with Daniel. [Laura: And check out the ARM Convention too!]
[+] Support your spouse. I say this one from personal experience: having a kiddo with special needs can put a serious strain on your marriage; and unless both of you are supporting the other, it will not be good. This means that if the wife is home with the child all day, the husband needs to do bathtime or bedtime with them, learn how to work with them effectively in case the wife needs to go somewhere, and needs to give her at least a small break when he gets home from work so she can shower, catch up on housework, or stare at a wall for 10 minutes. I am not saying this to be a feminist — I remember the fatigue from having Daniel at home by myself for 16 hours on my former husband’s busiest days and not getting a break unless he decided to take a nap.
[+] Find what works for your family. Every kid is different and not everything works the same for them. We found that keeping our stroller for Daniel until he was almost 6 years old worked well for when I was headed to an appointment by myself because then I could strap him in and not have to worry about him running into traffic while I grabbed the Binders of Fun from the car or locked the doors. When I would travel alone with him to visit my parents in northern California, that stroller meant that I might be able to use a public bathroom without him running away or getting into things.
[+] Have a sense of humor. Life is too short to be serious and sometimes, you just need to laugh at the absurdity of a situation. The name “Binders of Fun” came out of the time when I went to register Daniel for kindergarten and did not have all the documents that I needed because the special education people had not told me what I had to bring. After dropping Daniel and my former husband at home, I grabbed the two binders of paperwork, went back to the school, and said something along the lines of, “OK… I have the Binders of Fun. What do you guys need?” The school secretary and the school psychologist laughed and those two (now three) binders of paperwork were christened “the Binders of Fun”.
FIVE TIPS FOR THE CHURCH COMMUNITY
For the community:
[+] Please don’t compare our kids to yours. Nothing is as soul-crushing as hearing someone say, “Your child started walking at 2.5 years old? *MINE* was walking at ten months old!” We are already quite aware of how delayed our child is or of what limitations they have. We really do *NOT* need someone to remind us. Instead, please celebrate our kids’ milestones with us because you probably do not see the amount of work it took to get there.
[+] Please remove the word “retarded” from your vocabulary. There are few things that are more hurtful than someone describing my child as “retarded” or someone using the word in my presence to describe the ridiculous actions of another person. There *ARE* better and more specific words to use. Please find them.
[+] Unless you are parenting a child with our child’s diagnosis or you happen to be a researcher on that particular subject, please do not give us advice unless we specifically ask for it. I have pondered creating a shirt that reads “Yes, my child is autistic. Yes, we vaccinated him. No, he is not on a gluten-free diet. Please go away.” The reason: I have had so many people come up to me and tell me about how my child’s autism was caused by me vaccinating him, putting him on a gluten-free diet would cure him. My response to this is to usually just stare at you as I try to summon up some polite words to tell you that you have no idea what you are talking about and you are telling me that the thing that makes my child unique is my fault. Vaccines do not cause autism (Daniel’s is genetic), going gluten-free does not work for many children, and autism is not a condition with a cure — it is a neurological condition that affects the way you process sensory information.
Also along these lines, please do not criticize any decisions we make about how we are choosing to deal with our child’s diagnosis unless it specifically endangers them. I have had many people berate me about why I am not homeschooling Daniel, why I have not put him on the GAPS diet, why I have not put him in an institution to make my life easier… (I am not kidding about that last one.) I lack the expertise and patience to effectively homeschool Daniel, I want him to be socialized and learn how to interact in the real world, and I want him to learn how to live independently. Please help me to do this and do not criticize me for how I choose to go about it.
[+] Please speak to our child normally. Daniel’s receptive communication (his understanding of language) is completely normal — it is only his speech that is delayed. This means that asking me nastily in front of him if he understands English is quite insulting to him and to me. He understands you when you say “hi”, he knows you are talking about him, and if you put out your hand for him to shake, he will shake it. When he was younger and we lived near Sacramento, a couple of the employees at the local Trader Joe’s would have one-sided conversations with him or make race car noises as they were pushing the shopping cart to the car. Those times always made me smile because they were including him and treating him like a normal kid.
[+] Please feel free to ask us polite questions about what you are seeing or ask us if we need help. Until Daniel learned to walk, I had to carry him everywhere and or stick him in his stroller. I remember a shopping trip two years ago when I dropped my wallet while trying to keep ahold of Daniel and pay for groceries. The lovely cashier at Trader Joe’s grabbed another employee to hold on to Daniel, helped me pick everything up, and made sure I had help getting to my car. Other people have opened doors for me when I had Daniel in the stroller, have offered to carry something to my car, or have held a shopping cart still so I could lift Daniel into it. (I am only about 5’1″ tall so putting him in a shopping cart requires lifting him up almost over my shoulders.) As far as questions, asking me politely if he is autistic is not insulting nor is asking me why I am doing something with him a certain way. I have no problem explaining why I am touching his mouth to get him to speak or signing “all done” to get him to move on from something.
This is just the tip of the iceberg on my experiences with parenting Daniel and I am more than willing to answer questions that people have. My email address is jen[at]grace-filled[dot]net and I am usually good (most times fanatical) about returning emails. 🙂
Jen is so wonderful to share her experience with us, and she’s even planning a follow up, God willing, so keep your eyes peeled for that. Visit ::Meditatio:: for more updates from her!
From July 21-24, 2016, in Florida (USA), there is an amazing convention, now in its 6th year, for families of children with special needs. If you are a Coptic family with a special needs child, register to attend. If you know a family, pass the information along. And if you would like to volunteer, the servants who run the convention would so appreciate your help.
There are lectures on spiritual topics and presentations to address concerns and challenges (with child care for the parents!). There are also Divine Liturgies and field trips and workshops–overall just a genuinely safe and positive space to breathe with those who understand your journey best. (See Jen’s third reminder for parents above). Register today.