Sometimes I Wish It Wasn’t So Hard
My autism “ah-ha” moment came when my youngest son was six years old. He was diagnosed at age four with moderate to severe autism and a global delay. I was recently a single mom of the three boys, with two of them on the autism spectrum. My one son however was high functioning and steadily progressing.
That was not the case with my middle son though and it was a very hard pill to swallow. We had many medical professional tells us that we needed to focus on quality of life moving forward as he was still working on preschool work. This was on the back of two serious regressions and some serious displays of aggression as well as self injurious behaviors.
Thankfully, he made some amazing progress. He became verbal and potty trained!
However, we still had poop smearing, usually in the bathroom and horrible meltdowns whenever we left the house. This meant we didn’t leave very often.
The day of my ‘ah-ha’ moment was incredibly hard. We had decided to make a trip to the thrift store to see if we could find a new toy as this was a celebration! He had learned two new sight words!
We all piled up in our minivan, myself, my youngest son Jeremy, and their friend who was also autistic. It was very evident, however once we got there that my son was very close to a meltdown. The other boys were looking to see what treasures they could find. They were both so calm.
I ended up having to carry my son out of the store whilst he kicked and screamed. Once we were outside things only got worse as I tried to hold him to keep him safe on a grassy area near the parking lot.
Many well-meaning bystanders came up to try and help me because at this point he had bit me 25 times. He had also headbutt me so hard my nose was bleeding. It was a very hard moment.
Eventually, I was able to get him to the car and to his play phone to watch his shows. That was the moment I realized that this probably not going to get better and that we were looking at having the same aggressive behaviors when he was 10 or even 20.
I was so depressed afterward and all I could think was…’How am I going to do this alone?’
We ended up spending the rest of our summer, and much of the fall and winter at home. His aggression’s keep getting worse. We are still dealing with some very serious regressions too where we lose a lot of hard earned skills.
But, I want you to know we love him unconditionally and thankfully he is very happy.
However, I would be lying if I didn’t say that sometimes I wish everything wasn’t so hard.
Written by, Sarah Maynard
I am a 36 yeard old single mom of three boys. My two youngest are on the spectrum. It hasn’t always been easy but we have so much fun! My 12 yr old has Aspergers and my youngest has moderate classic autism. We have made it through so much of the elopement, aggressive behavior, sleep and GI issues and now we are regressing. My motto is ‘this too shall pass’ and that gets me through the hard times.
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All I can tell you, is to not stop, keep doing everything that you’re doing. You just never know how far he will go unless you keep moving. I say this remembering the days that I just couldn’t get through. But everyday he’s learning, you’re teaching him, he is growing. Hang in there! I say this with tears in my eyes remembering every moment, every meltdown in the store, the teachers carrying him down the hallway kicking and screaming at school. I feel you. Deeply feel you. And my advice is it’s okay to let go of the future that you had planned, but work hard everyday knowing that there is a future and he will be amazing in that future. Strong bear hugs to you!
You are an amazing mom, Sarah. Life with autism is like no other. My son is Aspergers. I know some of your struggles, but I have a dear friend who can truly relate as her son was also non-verbal autistic. She was introduced to Juice Plus+ and it completely changed his, their life. Is he still autistic? Yes. But he was the first autistic person to graduate from Radford University. Life didn’t become problem-free, but it improved remarkably. It’s worth a look. juiceplus.com
Hi Kate I know how you feel I have a some with a mental illness, He was 18 when i found out and now he is 38 so years of crying and feelings of anger hate love I get it and i pray for you and your boy. I don’t know if this will help you or if you are even interested. I came across a Dr by the name of Dr Amen google him he is amazing and maybe he can help you . take care and lots of hugs to you ..Judy
Hi I saw your video and I am not an autism parent , but I am an autism sibling and when I was young I was bit , hit slapped and my parents had child services checking in because when the teachers asked where my bruises came from I said my brother . He constantly was jumping off the mantle , running into traffic , and my parents could never attend my events together , in fact I believe they got divorced because of their 2 different view points on raising their special need kid. Flash forward 25 years , yes 25 years can you believe it he is still essentially non verbal but he tells us he loves every day , with the help of a job coach he goes to work and delivers meals on wheels , he stops on the street corner and waits for someone to help him across the street , he sits still and watches a full movie from start to finish , he runs on the treadmill 6 days a week and the gym even puts on Cartoon Network for him , he can wash himself with verbal prompting , he looks in our eyes and 90% of the time he is the happiest most loved 28 year old in the world . He has a special bond with his sister (me) he even gave me away at wedding , we go to Disney World almost monthly , my husband adores him and we continue to teach him . He is not alone , and I’m leaving this comment cuz I see your fear but that other beautiful baby you are raising will love cooper just as much as I love my brother Matty . Matty doesn’t live in a home he lives with my husband n me and my husband always knew we were a package . Your other son like myself being young n our preteens we may feel left at times but our brother’s struggle makes us work harder in this world and accomplish dreams because even when we fail we have the ability to eventually get it , our brother inspires us to do better , be better . So autism mom breathe love your boys , live in the moment there are better days ahead and lots of love for both your boys ! XoXo -Amy n Matty #autismsiblingsrock
Hi Sarah, I hope this message doesn’t get lost and you can see it. I’m a teacher, not special ed, but follow many autism pages just out of interest. I follow a young man’s story who is now 20(?) and has severe autism, was classed as “low-functioning” and not accepted at any special ed schools. His dad retired early to teach him skills so he could work and make a living even when his parents are gone.
The fb page is called Operation Meaningful Life, and all posts public so you can see without joining. I hope you’ll find the posts encouraging and comfort you even just a little. Take care
https://m.facebook.com/groups/800572066686292
I can bring him 100 % back. I am Kerri Rivera’s student and working with autistic kids in Croatia and ex Yu countries. So far we have 400 healed children and a new group of 200. My two boys are healed both. Filip (9) was the worst case of autism possible. Now healty child going to regular school with best grades. Come, I will bring him back to 100 % life. He is only poisoned with vaccines.
Blessings and strength to you. I was you about 20 years ago. Many sleepless nights after difficult days. Wondering what my son’s and our family’s life would be in the future. My future is now, my son is now 29 years old, on the moderate to severe spectrum, limited verbal. I was told with his diagnosis at 18 months old by a specialist, “he’s healthy, he’s happy, take him home.” I had no idea what autism was, and he progressed “normally” up to that point. His vocabulary was what it should have been for a child his age, then everything changed. No eye contact, going into himself, fixating on objects. After many sleepless nights, and with the help of a supportive family unit, we are okay. He is healthy and happy and most importantly loved. His siblings are married and have started their lives, and I would be lying if I didn’t still feel sad occasionally about the what could have been in his life. One day at a time, and with plans in place for when I am not here, we continue to move forward and live the best life we can. You are doing a great job, and you are stronger than you know. I can tell that your son is deeply loved by you and your family. Blessings to you all.
I hope you find encouragement from sharing your story. I know it doesn’t help much when people sympathize with you. There’s really nothing we can say to change your circumstances. What I would like to offer is my sincere thanks, appreciation, and admiration for NOT aborting your child. You could have chosen the path that was easier (in the long run).
You describe yourself as a person who is not very religious. BUT, when you were at the end of yourself, you turned to God. That is all He wants. I think you knew when you prayed, that He most likely will not change your circumstance. You still had a glimmer of faith that He was there. He is!! We all have different burdens we carry. None worse than others. Just different. He doesn’t promise anyone of us an easy life. He promises he’ll help us through this life and all the yuck that comes with it. I believe He will guide you through each and every kicking and hitting day. May you continue to try and find peace through God. He wanted you to have your beautiful son, or else he wouldn’t have put him in your arms.
I just wanted to say to all the parents out there that when we would walk out behind our house to the play gym my twins would have meltdowns they would climb up to the slide and start hitting their selves we would take them right back in and it would take some time to get them to calm down oh my goodness two with these meltdowns at he same time. I asked myself what’s wrong we went to several doctors for years everyone blamed it on austism they are always going to be like this they need a pill on put away we were told. I want to make my story short we found out they were allergic to everything outside they never showed sines of watery eyes or sneezing runny nose or even a cough. Could this be a reason many other children can not leave their homes like ours. We had a allergist do the prick test down their backs and yes both my boys were allergic to everything outside and did I tell you they would bang their heads against a wall and had put holes in them we would be awaken in the middle of the night and run into their rooms to stop them. The Allergist gave my boys Zyrtec and Flonase changed our world they get to enjoy being outside No More MELTDOWNS oh my goodness what we all went through being free feels good. Mother’s please have your children checked for allergies and food sensitivities/ allergies please. My boys are gluten and casein, soy ,egg ,dye free when you feed them the wrong foods and they were not checked it could cause aggressive behaviors . They get a headache from the wrong foods and it causes an opium effect. They can not tell us even your perfume and cleaners, clothes detergent can throw them into aggressive behaviors. A tag from their shirt some people can not comprehend how sensitive our autistic children are. My boys have had so many side effects from seizure medicine and abilify and other drugs they gave my boys to stop them to quiet them wrong meds for allergies. They can not tell you when you put them on meds it does not agree with them and they still act up they are telling you they hurt or have a headache . I know all children are not the same but please get your children checked if your having problems when you leave the house our boys would almost rip their ears off and they would bleed in the car. I just hope I helped one child today that has allergies and show no symptoms like runny nose watery eyes sneezing our boys showed no signs. One spray of Flonase in each nostril the children’s and two teaspoons of Zyrtec I gave at night the Flonase we gave before going out or after they ate breakfast in the morning and put head phones on when your in a crowd they can not process all those sounds all at once and it can throw them in a frenzy. I really y hope I helped one child that can not talk like my twins that suffer from severe austism. I hope Cooper’s mom gets this out there on one of her videos to they should hand a pamphlet out to each child that is diagnosed with austism could save the child and parents a lot of misery.