Every Sunday, we take Cole to Sunday School to socialize with his peers and to learn about our faith. Every Sunday, I sit with Cole while the majority of other parents drop off their children, and I get to help him navigate through playtime, circle time, the kiddo sermon and crafts. Nearly every week, I leave on the brink of tears.
Seeing my son in such close proximity to his normally-progressing peers is more than I can handle some weeks. As they grasp their scissors and cut out their art projects, he throws his scissors and pouts because he doesn’t have the fine motor skills to use them, and it frustrates him – and right now, he doesn’t care to work on those skills. As they sit quietly for circle time, he sprawls on the floor, and has a meltdown when I ask him to sit up straight. As the other children talk about the bible lesson at hand, and what they did over Christmas break, Cole sits silently or buries his head bashfully in my chest. As they talk to one another, he quotes movies. None of these behaviors are new. I guess I always thought he’d grow out of them. Now I know that’s not the case.
The movie quotes (echolalia) are something that I find charming most of the time, because we went for so long with very little to no speech, but lately I lie awake at night and wonder what it would sound like to hear him carry on a real meaningful conversation with me – not one laced with lines from TV shows and books. Even conversations that are seemingly normal to outsiders, I know are linked to some show or book he has memorized. Without a doubt, I am thankful he makes an effort at socializing, even if it is scripted. I know there are other moms on the spectrum that don’t get the tenderness I get, and some that never hear their child speak, and I remember how lucky I truly am while he quotes Mickey’s Christmas Carol to me over breakfast as if saying, “Whose lonely grave is this?!” is appropriate breakfast table talk. 
As we leave Sunday school, I am overwhelmed by how much he has to learn and how much I must be failing him. I am so focused on his sensory needs and deficits that I haven’t even begun Kindergarten preparations, which you typically start at age 2.
Every day, I keep a journal making sure he gets sensory input 8 different times (total) in proprioceptive, vestibular, tactile and visual/auditory. I do tongue exercises with him to help with a weakness that’s affecting his speech. He gets OT and language at school. He gets OT and language privately. He just finished 3 1/2 months of listening therapy. He still gets brushed 4-6 times daily. We use a picture schedule with him to help with transitions (well, most days we do). He goes to “Little Gym” once a week for social and sensory. He is on a waiting list for ABA therapy, and that process should start in the next month. He starts a social skills play group in February.
The time I would have spent on his brother at this age to focus on Kindergarten readiness is gone before we start the day. I wonder aloud “When and how am I supposed to get him ready for Kindergarten?!”
Meanwhile, it seems that I have to fill out new forms, gather documents, fight the insurance company and research treatments every day, in addition to the full time employment and part time freelance work I have to do to keep up with all of this.
I am losing sleep obsessing over what more we can do for him. We were told he had a window – a formative window – at diagnosis, where he needed to get as much treatment as possible before 4 years of age, and we have gone full boar to get him what he needs. He has benefitted tremendously, coming out of his shell and is talking more (if mostly in scripts) and laughing more. He is less anxious about strangers, situations, changes and textures than he once was. He seems happier, more secure in himself. I thank God that all this effort is doing some good.
All of this is wonderful, incredible, amazing… but the flipside is fulltime exhaustion on my part; some degree of disconnect from my oldest son (at least perceived on my part) because I only have so much energy to focus; bitterness toward my spouse when he doesn’t know all the autism buzz words, or doesn’t log Cole’s sensory inputs; guilt when I sleep, guilt when I don’t… I can’t seem to get through a day without 5-10 emails dealing with his treatment, and 3-5 phone calls. I look at pictures of generic children in our stock photo database at work and wonder if they’re autistic too - it’s statistically possible, you know…
I have literally put the weight of the world upon my shoulders and I don’t see any logical way to relieve the pressure. In my mind, Cole’s future happiness, his chance at normal school, possibilities of friendship, marriage and children, all weigh on what I do now. My husband says to take a personal day from work to sleep, but all I can imagine is what little good that would do when I really need a week to sleep… a month on an island.
So, right now, I am “Down in the Valley,” as the song says, and when it comes on my iPod in the car driving home from church, I start to sing the “Oooh, ooooh, oooh” refrain and tears sting my cheeks – a more and more common occurence, these days. Some days are better than others, and I just need to get through this year and give him all that he needs.
You sound so much like me. My daughter has PDD-NOS and if it werent for my willingness to address her issues she wouldn’t be in all the things she is today. For months I questioned and researched and when I finally brought my concerns to my husband he thought it wad crazy because to be diagnosed meant to be damaged goods in his mind and for us, our daughter is perfect as she is.
From day one we have done all we could to protect her and are involved in everything she does. We worry and stress over her wanting her to have the best and most full life possible but we couldnt protect her from pdd.
There was a certain amount of guilt and hurt we go through even on a daily basis – unreasonably punishing ourselves over this and for what? Because it isn’t our fault that our child isn’t typical? It seems ridiculous really, or at least my head tells me that, my heart just wants what every parent wants for their hold to have a good life and to be happy. All anyone has to do is look at our daughter to know she is happy, and she has a great life because we work from home and are with her 24/7.
The best thing you can do for yourself is to give yourself some credit for being a wonderful and involved parent. Don’t hold it against yourself that you can’t be superhuman. There are only so many hours in the day and you can’t do it all. You also can’t make your son like everyone else overnight or maybe at all and that is ok. As much as it hurts me, I have to remind myself that my daughter will likely never be typical and that it is ok if she isnt. She is who she is and I will help her to be he best possible version of herself and that is all I can do.
We too have conversations from movies, our daughter’s movie of choice is Dora. We can have conversations for 20 minutes about Swipper the Fox
I envy sometimes even my sister in law the conversations she has with my nephew when he communicates his thoughts and personality and I wish I could havehose experiences too. Then I realize that I do only in a different way.
My daughter is excessively happy if such a thing exists. She finds joy in everything she does. We are the family watching a game wig the child laughing and cheering every play that happens for both teams. We are the parents getting glares from parents because out daughter is screaming and cheering when someone makes a big splash during a diving competition. (Big splashes are fun for her!) She is about an octave or two louder than the social norm but always happy, and I just say, well would you rather she be crying?
She loves playing with other kids, but doesn’t always know how to play with them. Kids talk to her and want to play with her buy she doesn’t know what theyre saying or how to play in all their reindeer games. She says uh huh or ok but has no idea what she is agreeing to. I have to then explain to them shr doesn’t understand them and that she will be happy just to follow them around and that usually helps.
Dont beat yourself up for what.your child isnt, congratulate yourself for what they are. We are told all the time that our daughter is in such a good place and has the skills she does because we have been so involved with her. She began a once a week program with a speech therapist at 23 months and now at 38 months is learning at a faster rate than typical kids. She is in a special education class twice a week.
So for you and other parents out there going through he same thing, forgive yourself… You are not superhuman. Take care of yourself so you can take care of your child. The best medicine is love and those of us with special needs kids have that in abundance. God bless.
Thank you for sharing this. It is exactly what I needed to hear. Your daughter sounds like a lovely person and a joy to be around.
I appreciate you taking the time out of your exhausting day to put your thoughts on my computer. I swear I could have posted the exact same blog. Many minutes of the day are filled with worry, heartache, tears, frustration and guilt. Hearing your words eases the pressures.
My 5 1/2 year old seems to be quite advanced. I’ve never worried about him or had any struggles. Everything always seemed too easy. My youngest, who will be 3 on Monday, has yet to begin speaking, other than counting to 20 and back. He completely melts down when he hears another child cry and he is easily frustrated with his inabilities. I fear I let my 5 1/2 year fend for himself when he really could use some one-on-one time simply because my younger son isn’t so capable. I fear I hold my youngest back at times because I’m overprotective.
My almost 3 year old has a developmental evaluation with a child psychologist in 3 weeks. I hope this will teach me how to better support his needs, whatever they might be.
I know the most important thing of all is to show both of my kids they are loved. That’s what life is about, right?!
I will follow your blog and hope to hear more from you. Blessings to you and your family!
You are so right.
I don’t know where you are, but I’ve recently stumbled into a web of resources through Missouri’s Department of Developmental Disabilities. They fund classes and respite care so we can learn more and get a break. We take our first class on Saturday and should start getting regular breaks in a few weeks. Once all that falls into place it will help. I’m planning on using some of the respite time off to reconnect with my oldest. He is exceptionally gifted and very independent, but I feel we’re losing that connection we used to have. I hope you have some of the same resources. Another blessing to me recently has been the book “Thinking in Pictures” by Temple Grandin and the movie “Temple Grandin.” I recommend checking them out. Thank you for following my blog. It’s nice to support this community in my little way. Being a writer, it’s all I know to do. 
God bless you and your children. I’ll keep you in my prayers tonight. <3
Personally, I find it a tragedy that the “specialists” are all selling this “window” thing. The facts are that autistic people (just like normal people) can learn all their lives. There is no rush for your child to grow up and the acceptance part for parents is that your autistic child will not be “normal” no matter how much you worry for him or how much you spend on him. He will always be autistic.
Right now it feels like a huge burden as the delta between him and his peers is so large, but as he grows up the delta will get smaller. There are many autistic adlts running the earth today who had zero intervention or therapies or training. Because they could quote movies, they had speech and therefor did not get diagnosed and yet they learned to speak and to go to school and to do things that allow them to integrate (in whatever ways they are capable) into society.
The facts are that all this therapy that people are pushing are not proving in the labs to be all that the folks are touting. (The same folks who are recieving funds for this therapy) In fact a recent study showed that one thousand dollars in respite care for the Mom was worth more than the same money spent on therapies for the child. This tells us that a calm, relaxed, loving parent is the best thing you cn offer your autistic kid.
Not advocating that you give up. Just suggesting that you give yourself a much needed break from the worrying. Your child will be fine because you love, care and reach out to him. He will be fine because you are fine.