This month is autism awareness month so in honor of that, I decided to write a piece to let you into our world. My husband reminded me that sometimes people have no clue what we experience because we don’t share it. I share this not that you would feel sorry for me, as I love my life and all my children! My philosophy lately is that if my being vulnerable in sharing a part of my life would help even one person, it would so… be worth it! It is in those ‘one’ times that others have shared, that have helped me on my journey of life. (please note – if you read this, please read it to the end to give it the fullness of meaning- thanks! You’re the best!)
A Look Through My Eyes.
What’s it like to have autism? Well, I’m not really sure I know the answer to that but I know what it’s like to be the mom of a son with Autism and a daughter with Prader-Willi Syndrome and I can tell you sometimes it can be challenging! This past week-end my husband and I had an opportunity to go away alone for a conference together. We had made all the preparations for our 2 adult children with disabilities – one of which is pretty high functioning and one which is pretty much non-verbal and needs much guidance and prompting. You know, if I heard you say you were going away and leaving your 24-year-old son and 34-year-old daughter, typically you’d think – no big deal, by that age they can take care of themselves – what’s the big deal, right? And typically, I would agree with you! I know as all my children were growing, I knew they were on loan from God for a season, to be raised up to become independent adults who would be able to take care of themselves. I have to say, my children who are typical are independent and have done amazing, I am so proud of them! But, there are some of us who know, sometimes life happens, and it is beyond our control. Some of you have experienced it with elderly parents, you realize at some point that they can no longer be independent and need some help. For some of you, this may seem like I’m just rambling and that’s o.k. Ramble along with me, get the visual because maybe at some point, you might be part of the solution.
In any case, my husband and I prepared for our long week-end. We had a gal to stay with the kids a couple days here, so they could still work and be in the comfort of their home. Then, we had a couple days planned with them at a respite center for the week-end, thinking they might have more opportunities for different activities and their own mini vacation of sorts.
First let me explain to you what this particular respite center is, in case you are wondering. It is a 4 bedroom, 6 bed house, that is run by an agency to give parents and caregivers a break from the everyday stresses that life can sometimes bring when you have children with special needs. Typically, the children can go anywhere from 1-4 days/nights, once a quarter, and they are cared for by a few caregivers. With great apprehension, we had used this service a couple times in the past. It’s hard to leave your children with total strangers – who does that right? On the other hand, we had gone to visit and met the staff and decided to try it out. The very first time Jessica went for a couple days and it was the longest days we had experienced in a while. When she came home, she had fun and the staff had all been amazing. A few months went by and we decided to try it again, this time she was armed with a phone so she could let me know if she was o.k. and she did just that (at 5:30 in the morning, ha-ha). We decided to go through the process to have Sam go with her. When we met with the original intake person, I asked if the kids could be in the same room to sleep. I know typically you wouldn’t want to put a male and female in the same room at that age but some things in our lives aren’t typical, if you hadn’t guessed, ha-ha. With Sam not being verbal, we were concerned about him being in a room alone for many reasons. I mean, I’d like to believe everyone in the world is loving and trusting but unfortunately there are some bad apples out there. If we can do any part in protecting our son from people taking advantage of him, my husband and I believe it’s our right as parents entrusted to him to do just that. We knew that if the 2 kids were in a bedroom together, they’d be comfortable. They would just change in the bathroom but at least they’d have a little security knowing that Jessica had a phone and could contact us if anyone came in during the night or she sensed any weirdness. The first time Sam went to respite, they shared a room and it turned out to be a great week-end for them.
Fast forward 3 months and here we are, all set to go away for a conference. I made arrangements; spoke to the person at the respite center when they called to arrange the weekend and made it known that I wanted them to share a room again. I was told that they would so I felt comfortable. My husband and I go to Pennsylvania for an amazing conference and all seems to be going well. I talk to the kids daily and they are working and having fun. Friday night comes and we get a call from our sitter who is now dropping them off for part two of their weekend; she is at the respite center and they are telling her Sam will be in a room by himself, at which point she calls us because she knew that was not our arrangement. I get on the phone with one staff person and then another and they go into this big spiel on why the kids legally can’t be together, yada yada… and I’m on the other end in disbelief – NOW you chose to tell me?? You couldn’t tell me months ago when we first set this up?? Are you kidding?? I would like to say I was calm, cool and collected but I was a mom who was upset by a bomb that just got dropped on me – a momma bear whose cubs were in questionable circumstances. Needless to say, my husband and I were both pretty upset, so much so, we almost came home. We got off the phone and prayed and talked about it; we decided we would try it this time and see how it went. We talked to the kids and they seemed to be o.k. Saturday we checked in on them and they were ‘celebrating’ Sam’s birthday early (it’s on May 1st and it was April 16th, close enough to celebrate J ). Who doesn’t like cake and ice cream? I could hear Sam smiling and giggling through the phone so I figured he was o.k. until Sunday.
Sunday we pack up and come home, anxious to see the kids. When we got to the respite center, we were greeted outside by the staff person I spoke to Friday night who again was trying to justify his decision. In that same conversation, he told us how the kids had gone bowling that day and they had gone walking that afternoon. Oh, and ‘Sam had let out a couple yells but we were outside so, no big deal, if he wants to yell, that’s the place’. Well, you have to imagine our faces and our hearts as we walked through the respite door and saw our children – they looked like two ragamuffins!! Sam had his pants down his butt and they kept telling him to pull them up, thus his yelling. Jessica on the other hand, had forgotten her hair pick and she looked like she hadn’t combed her hair in days. Now you have to understand – although Jess is very high functioning, the one thing I told them was that she would need help combing her hair. She has these curls that are amazing but without a little help from her friends, they tangle in a mess; picture a brillo pad with soft dark brown hair!!
Upon realizing Sam’s belt was nowhere to be found, my husband took a pair of Sam’s other pants and brought him into the bathroom to change. Needless to say, my husband and I were both heartsick. What will happen down the road when we can no longer take care of them and they need to be in a place like this full time? Will they not use common sense and treat them as though they would their own child? Common sense says, ‘let’s see – Sam’s pants fit him fine Friday night and Saturday; his pants today don’t fit – maybe he accidentally has someone else’s who are bigger – maybe we should have him change into one of the other pairs so when he goes bowling, they’re not constantly falling down and he could actually have fun or… when we go walking, we’re not telling him to pick them up and he’s not yelling at us because he doesn’t know how to say ‘Look, you a-hole, can’t you see these are too big and that’s why they keep falling? Find me a belt – a rope? Have me change? Something???’,’ I can only imagine the thoughts he had behind his yells! … Common sense says, ‘Jess, I see it’s noted you need help with your hair – can I help you with it? Oh, you don’t have a comb -let’s find you one and let me help you with it.’ Ughhh…
So here I am, days later and I’m praying how can I make a positive out of this negative? How can I use this bad experience for good? I mean, we are all people and I get that some days we are more on our game than others. The whole pants thing was a fiasco all the way around – a pair of my husband’s pants accidentally got packed and the sitter forgot to check if Sam had his belt and wallet on because his pants actually fit on Friday so she didn’t even notice he was missing them. How can we use this experience and turn it around? Well, my hope is that by sharing my experience, it might open your eyes to some of the realities around us. If you are in the field of caring for others – use common sense and compassion, there are people leaving their precious ones in your hands, trusting you to be their voice and help meet their needs. Maybe you’re a CNA in a nursing home with the elderly, who have many similar needs. Maybe you’re a parent of a special needs child and you too are concerned for the safety and well-being of your loved one. Maybe you have none of these individuals in your life and this doesn’t affect you. I know I shared this story with an individual who is not affected in the day to day life/struggles some of us parents face 24/7 and they blew it off like, no big deal but… if you are the parent, it is a big deal. If you are a substitute caregiver for our children, we hope you would use common sense on the everyday practical care.
Autism has many faces, as do all children with special needs, and the needs range from severe and total care to very high functioning with little care. Those on one end of the spectrum are verbal and can tell you their needs and somewhat communicate but those on the other end need your help to try to figure out what is going on and to help be their voice, especially around those who are ignorant or have no clue. God has entrusted us with the lives of these special individuals. We pray for healing, and events like this cause us all the more to be on our face that the healing would come sooner than later! In the meantime, we need to be like King David who took his friend Jonathan’s son Mephibosheth into the kingdom and took care of all his needs. (2 Samuel 9:1-12)
If you are a parent of a child with special needs, I want to applaud you! If you have all typical children, I applaud you! Parenting is one of the hardest jobs there is to do and all that is asked of us is that we do the best we can with what we have, God will give you the grace, for children are His reward. If you are a caregiver of any sort – whether in the health field, in the special needs field, for a parent or otherwise, I applaud you! You have a special calling and you are appreciated! I’m sorry for those rough days but know that if you are doing the best you can, that will be honored. If you are none of the above but braved reading this to the end – be a prayer warrior for these families, we need your love and support and your prayers, they get us through the roughest of times; sometimes we just need your hug and a smile to let us know we’re going to make it and our kids are going to make it. Sometimes we just need you to cry with us when our heart is broken because we can’t fix things; sometimes we just need you to laugh with us when we talk about some of the crazy things life brings. Most of all, we just need you to walk alongside us, arms linked, encouraging each other on this journey life brings. Thanks for taking time to see things through my eyes – you are amazing!!