When I had my children, I dreamt of my children growing up, getting jobs, college, and moving out to start their own lives. I didn’t dream of raising my children and then having to help raise one of my grandchildren. Sometimes though, for reasons beyond our control, life isn’t fair and tough choices have to be made.
Our son has moved out and is working and living on his own. Our daughter moved out for a month and a half, moved 1300 miles away and came home due to circumstances beyond her control and found out she was going to have a child. That was three years ago. There were many mixed emotions from all of us, and wading through them and helping her make decisions wasn’t as difficult as some might believe because in my world love always wins.
1 Peter 4:8New International Version (NIV)
8 Above all, love each other deeply, because love covers over a multitude of sins.
All of us sin, all of us make poor choices and we can choose to love and be loved or we can not. So, even though our daughter made some very poor choices, we chose love over anger and fear.
We offered to help her figure things out and help her with her son. We had no idea that meant we would basically be raising her son, while she merely existed. We know that our daughter has mental health problems that need much more therapy than she is currently receiving, but we also are aware that as an adult, we cannot force her to be tested for conditions, unless she chooses to do them on her own.
We chose to show grace. To love unconditionally, which isn’t always the easiest choice and to help her in any way we could. In doing this, we have enabled her to take advantage of her situation. We are truly aware of this. But we also believe that she has similar conditions as her son, and believe that she is doing all she is capable of. It is definitely a difficult situation.
We never, in a million years, thought we would virtually be raising our grandson. She takes care of him, but not all day, every day as most parents would. She helps feed and changes him, but she struggles with his hyperactivity and constant need for attention. It breaks my heart. I love her and I love Him.
When our grandson was born, healthy and happy we had no idea the challenges that all of us would face. As he grew, we noticed how he didn’t speak and how he would sit and bang his head back and forth, he has an unimaginable strength for a toddler and many other signs. But he crawled and walked very early, so his weaknesses in other areas were passed off by physicians as no big deal. Some babies that have developmental milestones and reach them earlier than most, just means other areas will be slower.
It took until the age of two for medical professionals to take us seriously and realize that he did have developmental delays that needed to be addressed. At age 26 months, he was diagnosed with Autism Spectrum Disorder, Level 2, requiring substantial support and he was considered nonverbal.
The past year there have been many arguments between my husband and I and our daughter. There have also been many times of laughing and crying. We knew that our grandson would need more support and therapies and care than she could offer. And so we have become “grandparents raising grandchildren”. Our daughter still retains custody of her child and they live with us. For many personal and private reasons, we have chosen not to pursue custody at this time. I have been granted Power of Attorney over all of his financial, medical and educational needs, until such time, if at all, that his mother can take over 100%.
Ours is a unique situation. Many grandparents raising grandchildren are doing it because the biological parents aren’t in the picture anymore or are incarcerated and unavailable or aren’t fit to care for themselves, let alone their children. We know she loves her son as much as he loves her, so we continue to help them both.
Taking care of our grandson is a full-time job. He cannot be left unattended for any reason. He must be supervised at all times. For the most part, he is a very happy child, but there are times when he can be very angry and destructive. I believe the anger stems from him not being able to communicate and the frustration that comes with that. He doesn’t thrive if toys aren’t scattered everywhere. I don’t thrive very well if the house is in total disarray.
Over the last year, I have done hours of research on how to teach our grandson to communicate through words, sign language and PECS (Picture Exchange Communication System). He has learned his colors, the alphabet and learning how to listen. As with any three-year-old, whether they are on the spectrum or not, selective hearing is a given. But there are many times that he does not hear me, because sensory overload is in full swing and where we can distinquish the sounds and filter out what we are hearing to focus on one voice or one noise, he cannot. Not always. He loves working with sequencing patterns and this is no surprise because he loves patterns, lining objects up or stacking them . He likes to help put groceries away, canned goods being his favorite, because he can sort the ones that are the same and stack them up. He doesn’t like when they are taken away from him and put away.
As I sit here and write this blog, what used to take maybe 15 minutes now takes hours, as there are constant interruptions. He wanted juice. He wanted a snack. He wanted me to play with him. He wanted me to hold him. He wanted to watch a video. He wanted to grab things off the fireplace mantle that he is not allowed to have. He wanted to carry the cat that doesn’t like to be carried. He wanted to take paperwork and books off my desk and play “52 pickup”. He has plenty of toys to play with. He likes to look at books, but not have them read, that takes too long. He can only have board books. If they are not board books, I must sit with him, or he will tear the pages out and rip the binding off the book. He wanted me to blow bubbles with my chewing gum and then he wanted my glasses off and music turned on, which means he is tired. He touches my face, plays with my hair, rubs his eyes, yawns and just when I think he is almost out, he pops up and hugs me, jumps down, runs back and forth in the room we are in and lays down to play with his cars. I get worn out just watching him. Last night, he found the Febreeze air freshener spray and made sure the living room was smelling good. By the time I reached him, getting out of my chair was difficult, he had pretty much used up the remaining 1/2 of the can that was left! Could I yell at him about it? Nope It was my fault I left it within his reach. I simply forgot to put it up. It still smells like Hawaiin Breeze in our little corner of the world.
The accordion style, hinged gates keep him from the stairway entrance and other parts of the downstairs where he cannot go unless we are with him. Kitchen. Laundry Area. And although he is mighty, he hasn’t figured out how to open the gates, but he is determined. I used to have a foot rest in the room until he realized that he could push that up next to the gate, so he could climb over and jump into the next room. Now, there is no stool to rest my legs on, but he is safe. It’s a trade-off I am willing to do. All interior and exterior doors have additional hooks and locks on them, so he doesn’t run outside and into the street or take off.
Right now, he is napping on the loveseat, after sitting with me while I rocked him back and forth and we listened to music. He loves music, but there are some songs that he cries, maybe the instruments cause the pain or the level of noise is too great. I draw him closer and hug him tight.
Over a month ago, we took him to get his haircut. It was a life draining experience for all of us. He does NOT like his head being touched for any reason and the scissors and clippers scared him, but he needed a haircut and we knew it needed to be fast. If I mention to anyone the word haircut in the course of a conversation, he will say “me”, “da” “maw” “mom” and “car”. And I will say, “Yes, you, me, papaw and mommy rode in the car and we went and you got your hair cut.” His response is “Yay!”. In his world, yay means “yay” and “yes”. He remembers everything. He remembers the way to a certain store and if we don’t go the same way as we always do, he cries. He does not like a deviation from his routine at all.
As we continue to go to speech therapy every week and have The Play Project come into our home every week to work with him on engaging with others, pretend play, and communication, I will continue to strive to learn all I can to be his advocate and help him succeed. My hope is that one day, his mother will want to be involved more.
We have three other grandchildren that we love also and sometime’s I feel as if they are slighted, but we do our very best to be in their lives as well and spend time doing things they like to do. Being a grandparent raising a grandchild is a struggle some days, because you don’t know where being the parent stops and grandparenting starts, but you know that you will do whatever is necessary to make sure that your grandchild with special needs thrives in their life.
Just a little over a year ago, I was working full time in a large retail company interacting with adults every day. Now, most of my interaction is with a few adults and a child that laughs, giggles, screams, cries, pounds his head on the floor and I wouldn’t have it any other way.
The hardest part is gaining support. I belong to several online groups of people that understand what I am going through, what we are going through and there we can share our stories, our tears, we can be real, no sugarcoating necessary.
My advice to everyone that knows grandparents that are raising grandchildren, whatever the reason is, offer to give them a break. The reason we have our children, when we are young, is so we can keep up with them and their needs. As we get older, it’s not always as easy. Be that shoulder when they need to vent a little or need a shoulder to lean on. Each situation is unique. Don’t separate yourself from your friends because their circumstances have changed. Ask what you can do to make the load a little lighter. It really will be appreciated more than you know.
May you know that Jesus Loves You! #HopeAlwaysHaveFaith
Blessings to you!
Early intervention is so important when you think that your child or a child whom you love has developmental delays. Push for the doctors to listen to you and if your child’s doctor doesn’t listen, find another doctor.
Every parent, whether by birth or adoption, want only the best for their child. They want to see them live to their fullest potential, fit in with the world around them and succeed in every way. When you notice that developmental milestones aren’t being reached, it may just be that they are taking their time. I am not saying to push the panic button. However, if you have a concern, express it, explain it and wait for the answer. If their physician sees no concern, ask them to explain it again.
I have become an advocate for this cause because I live with it every single day. Our grandson, Tyson has Autism Spectrum Disorder, @level 2 requiring substantial support. That is the official diagnosis. He is three now. When he was just a little over 2 years old, we finally found a doctor that was willing to refer him to our local Children’s Hospital Developmental Pediatrics Clinic for further evaluations.
The signs started when he was about 6 months old. He didn’t ever really crawl on all fours, it was more of a “leap-frog” type of crawl. From birth, he had the strength of an ox to hold his head up and when you tried to lay him down to change him, he would twist and turn and place his body in such awkward positions, we didn’t know what to think. Diaper changes were traumatizing for him. The only way to get him to remain partially calm was to sing Amazing Grace to him to settle him while he was being changed.
When he was able to sit up on his own, he would and still does, bang his head and rock back and forth. Immediately we were concerned that maybe he had autism. He wasn’t cooing or saying mama or dada and when he tried to communicate, he would scream inaudible noises. Each and every time we brought our concerns up to his pediatrician, who had been one for over 30 years, we were always met with comments, such as “he has done so many other things early, he will talk when he is ready”. So we decided to trust her judgment. We didn’t know that maybe just maybe she wasn’t the right one to make the decision for us.
At his 18-month check-up, he was very active, wouldn’t sit still for any reason and loved climbing and jumping off chairs, stools, exam tables, but he didn’t like being examined, and his strength would reappear, he would twist and turn and this was chalked up to his age and something that was not a normal day thing. He had mastered walking on his own at 10 months, but still wasn’t showing any signs of talking. Trying to figure out what he needed or why he would cry became a guessing game. It was so frustrating for all of us, but mostly for him. Again, I asked, are you sure it isn’t autism and again I was told he did not exhibit any signs of autism. He was a boy and some boys develop slower in communication than girls and she was concerned. Again, we trusted our pediatrician.
We watched videos of the ABC song, we tried to show him pictures of animals and mouth the words to him when speaking, hoping anything would break through in his mind. The main concern at that point was how will he communicate what he is feeling, needing, wanting if he can’t talk to tell us.
We were very lucky that due to his mother being a single parent, she had signed up for Early Intervention Services when he had been born, in the event he would need them down the road. In the State of Ohio, Early Intervention services are from birth to three years old.
We had Help Me Grow Brighter Futures make home visits from 1 yr to 3 years old. This program focused not only on the child but also helping our daughter be the best parent she could be. They were able to get more services for Tyson and our daughter than we would have on our own. An ISFP (individualized services family plan) was initiated with goals and timelines to meet those goals for both our daughter and Tyson. If goals had not been met by the deadlines, we took a look at the goals, revised what needed and kept going.
HMGBF also helped us get connected with another early intervention provider, PACE (Parent and Child Enrichment Program) through our County Developmental Disabilities Offices. After evaluations with PACE, he started working with a speech therapist in the home, as well as a developmental specialist to find out exactly what he could do on his own and what he needed help with. These specialists were able to form a bond with him, as well as teaching all of us how to work with him at home, for continuity of care. They also helped us have him evaluated for Sensory Processing Disorder by an Occupational Therapist and it has been confirmed he is a Sensory Seeker and Avoider, depending on what we are talking about.
We must be ever vigilant and he can never be left alone. As with any three-year-old, he is very inquisitive and examines almost everything he can get his little fingers on, but he also throws objects as a way to get input his brain is not getting on its own. If you wish to read more about Sensory Processing Disorder, please click the link. He is considered an elopement risk or flight risk child. He doesn’t perceive dangerous situations as dangerous. He doesn’t understand that the street is not a place to play or if something is hot, he cannot touch it. And the most important thing is we can say, “No, stop” and he doesn’t have what his brain needs to process this information at the moment.
Autism Spectrum Disorder is a neurological condition and everyone on the Spectrum has their own challenges. The saying for people diagnosis with ASD is, “If you have met one person with autism, you have met one person with autism.” No two people on the spectrum are alike. What one treatment or therapy works for one person, may not work at all for the other.
From experience, living with and witnessing Tyson daily, Early Intervention Services are very important because a child’s brain is most impressionable and develops by age 3 if services are not started til later, they will progress, but it may be slower.
I am not a medical professional in any way, just a grandmother that has become an advocate for this beautiful little boy who wants so much to communicate with the world around him. If you would like to follow Tyson on his journey, please visit Missing Pieces-Living with Autism.
He has made progress since his diagnosis, so much so, that he will be starting Special Education Preschool services this fall in an integrated classroom. I can’t wait to see how he soars!
For more information on Autism Spectrum Disorder, please visit Autism Speaks.
May you know how much Jesus Loves You!#HopeAlways#HaveFaith
Blessings to all!