The Change.

I think it would be interesting to be a doctor that diagnoses autism. A family comes to you in a very vulnerable place. You give them the dreaded diagnosis and they go home and learn how to deal with it. The next check-up, the parents that you met last time are just a little stronger. Then the next time, and the next time. You see these changes happen. Until 1-2 years later, and they are no longer the person that they were at the initial appointment. It is a metamorphosis process of sorts that you are forced into as parents of children with special needs. No one asks for this life, but you take it and you adjust, and you become the person you need to be. Out of necessity. It would be hard to give the person the diagnosis, and know that you are drastically changing this person’s life. Obviously, the doctor is not actually the one changing their life, but it is the onset of their new reality. The actual diagnosis.

I would never want to go back and live that 6 months following diagnosis again. It was a dark, confusing, hard time. When I see parents about to get the diagnosis/ ones who just did, my heart goes out to them. I hurt for them knowing what is to come. I give advice, but nothing I can do can change what they are going through. You just have to step aside and watch them change into the person that they need to be. As they learn to do autism their way. Don’t get me wrong, I love the community in the autism world, and I don’t know what I would have done without people’s help along the way. Those who answered my questions about therapy, behaviors, self-care. But nothing can take away that stage that you must go through to be the Autism Parent you need to be.

I distinctly remember a meltdown that E was having one night. He was out of control. Literally. I don’t think he had actual control over what he was doing anymore. Nothing would get him to calm down. I was holding him in his room in the dark trying to get him to go back to sleep. He was flailing and trying to move everywhere. I was holding him as best as I could to keep him safe from himself. I could not comfort him. I just sat. I held it together at first, but then he wriggled a bit from the position I was holding him in and head butted me in the lip. Hard. My lip was split, swollen, and bleeding. That instant of sheer pain destroyed the barrier that was keeping me together. I sat there crying, holding my son, pleading with a higher power to help me know what to do. I thought in that moment, I cannot do this. I am not strong enough to handle this situation. I wondered why I was given a child like this. I felt claustrophobic, wondering if there was a light at the end of the tunnel. My husband came up to check on the situation. He took E from me and had a turn trying to calm him down. I went into my room and cried and cried and cried. I felt like a failure, unable to calm my own child. I thought it impossible that I could stretch any further without breaking. But I did. The wounds heal into a sort of armor, and you get up and you do it again and again and again. You get used to people staring in public when your child melts down. You get to used to the comments of others, strangers and sometimes those close to you even, about your parenting. You get used to having to dodge your child’s aggressive behaviors as if you are in a boxing match. You get used to functioning on 3 hours of sleep in a 24-hour period. You get used to filling out paper work and going to countless appointments. Strong people are not born strong. They are made.

The Ramblings Of Pessimism.

It’s like there’s a time bomb always ticking in the background. The background of my thoughts, of my routine, of everything in my daily life. The closer it gets to E’s 4th birthday, the more panicked I feel. The more restricted my airways become. I don’t think I ever really really believed that he wouldn’t talk. I kept thinking, not my E, he will eventually. He’ll get that speech therapy and it’ll take off. But, here we are at almost 3.5. Still no speech. He is smart as a whip and communicates in so many different ways, but I feel like the day is winding down. I am in the 11th hour. That might be a slightly dramatic description. There are kids that talk after the 4 year mark, and I do still have time. But in this moment of my fears, it feels exactly the way described. I think it goes hand in hand with the stages of grief. You swing from acceptance, to denial, to bargaining, to depression and back around again.

It’s the not knowing that really kills you. It’s also the seesaw of optimism mixed with the “well, its a spectrum” lines you get from the doctors. They never will tell you just how severe your kid actually is. I spend my nights googling, searching other autism forums, just trying to find out what I am up against. What group of autism is my son actually in? I hate this spectrum stuff. The spectrum is too broad, and it slights everyone. You are given a blanket diagnosis, with over a million different outcomes, and you just have to wait to see where your child lies. If you ask, they give you vague, nonsensical answers about it, “Well everyone is just so different on the spectrum. Anything can happen.” No definite answers. Tell me then what is the purpose of this “spectrum diagnosis“? What good does it do me if I still have no idea the true prognosis for my son? And why is it an unspoken taboo to ask just where your child lies in the vastness of this spectrum diagnosis.

It’s as if you were to take your kid to the doctor because something is clearly not right. He is coughing, he has random fevers, he randomly throws up. You know something is wrong but you don’t exactly know what. You get to the doctors office and they confirm your worries.

“Well ma’am, you did the right thing by bringing him in. There is definitely something wrong with him.”

“What is it? What’s wrong with him?”

“It’s Childhood Illness.”

“Okay. What is Childhood Illness? Will it get better?”

“We are not sure what will happen with him and his Childhood Illness long term, or even short term. He could always have these symptoms, he could get rid of them, or he could end up having just half of them long term. It’s hard to say.”

“What should I do to help him?”

“There are 100 different things you can try. Some might work, some might not, and… maybe, its a possibility, that all of them will not do a thing.”

“Okay… well, is there one that would work better for his type of Childhood Illness? Could we get more specific?”

“Don’t get caught up in the labels, just accept your son and his Childhood Illness.”

“Can I talk to anyone else that has a child with Childhood Illness?”

“Oh definitely, there are tons of support groups. There are so many moms that have kids with this. That mom over there in the waiting room,” the doctor says pointing. “Her son has it too.”

“It kind of looks like her son actually has completely different symptoms than my child.”

“It’s still Childhood Illness.”

“But there is literally nothing the same at all between our two kids.”

“Well, that’s the way Childhood Illness goes. Read this book about it.”

“But, this book is about children who sneeze not cough and have chronic bloody noses. My son doesn’t have any of that.”

“Like, I said, it’s a spectrum. Just read it. I’ll see you and your son in six months to discuss how trying as many of those 100 things you can in that period goes. Try not to go bankrupt on the way.”

Outside of autism and other disabilities is this considered an effective plan of action? I feel like the doctors around me spend so much time trying to instill me with hope and optimism that they forget to fill me in on the realities. I know that nobody can answer the questions that I want to know about E. But just give me a ballpark. There is a big difference in my life long-term having a non-verbal moderately severe child with autism, and having a verbal child with moderate autism. I just want the facts. I am not alone in this. In the autism forums that I frequent, the pages are full of, “Tell me where my child is on the spectrum. Does your child, who is doing this and that, talk? What should I expect?”

Nothing from a medical provider can change E. They can’t change the future. But could they help me better prepare for it? In a situation where hope is a dangerous thing, what’s the harm in just giving the hard facts? If my hopes are low, I can only go up if he exceeds those expectations.

 

Postal Head Games.

I’m an online shopper. I get a lot of stuff online. Diapers, wipes, cleaning supplies, clothes for me, clothes for the kids, books. You get it. There are so many pros to online shopping, it’s hard to say no. Free shipping, cheap prices, not having to go into a store to find said thing. It used to be just Amazon that did the free shipping thing, but now all of the websites do free shipping or at least free shipping after 50 dollars. It’s gotten to the point where if a website actually charges me for shipping, I get offended. I scoff. I cannot believe that they would dare add a 7.99 shipping charge onto my order. I’m so spoiled. We’re all so spoiled with the conveniences of our modern world. With that said, I lead into my problem.

It’s a very first world problem, but it is a problem. Any online shopper will sympathize with me I am sure. The mailman. The deliverer of my goods. The man who judges every purchase, every bill, how many packages I get, where the packages are from. I get a junk mail letter that looks like a collectors notice. I rip it open and relieved to see it is just a junk mail fake out, I want to shout back out the door at the mailman. “No worries! Just a false alarm! We actually are quite responsible with our finances!” The more packages I get, the more I feel like he judges the bills that I get. “Hmm… a second bill from the ENT. Maybe she should spend more time paying her bills and not ordering packages”. I think of all the mail I get and what my mailman can gather from me based on my parcels, magazines, letters, and so forth. He knows all my health problems, well at least the many specialists my family and I see. He knows we are LDS because he sees our church magazines come monthly. He knows we have a lot of family in Utah who send us letters and packages. I just feel like the mailman could be part detective. Why hire a private eye for anything when you can just question the mailman.

At first most of the stuff I ordered was from Amazon. So, he’d bring my big package of Subscribe and Save and I’d say, “Oh there’s my monthly supply of diapers. Thanks”. Then, I’d get another box and I’d say, “Oh, there are my wipes”.  After a few packages I start running out of excuses. I want to just yell out after him, “My son has autism!” I don’t know what it has to do with anything, but it seems like a decent enough excuse to use.

A recently had a growth spurt. When my kids have growth spurts they grow like two sizes at once and then just stay there for a year or so. So, I ordered her summer clothes and new shoes at the beginning of the summer. Then literally two weeks later she sprouted out of everything and I had to order new things. I guess what online ordering does have to do with Autism is that it’s hard for me to get to the store. So I buy a bunch of things, try them on, and ship back the ones that don’t work. I know that is easier for me and it’s nothing to be ashamed of, but I cannot help feeling guilty and sheepish when I get the packages in the mail. The worst thing is, companies lately love to send things out all individually. I don’t know why they do this. It’s not great for them long term. We see all those boxes and we become ashamed, or worse, they come on a Saturday when the husband is home and he freaks out and starts frantically scrolling on his phone checking the bank accounts to see if you have spent all of everything. They should have husband safe delivery that you can check when you order something. Because like I mentioned before, when husband sees it, you have to explain every purchase and then you have to look really responsible and return at least one item. You say something like, “Oh, I was just ordering these really to look at them. I am going to return them now that I was able to feel the beautiful quality of the clothes.” Then you ship them back cursing the stupid company that shipped them out to be delivered on a Saturday. It’s not even that the wife is overspending. At least not in my case. It’s just that husbands don’t really know the price of how much things are. If it were up to my husband, the shoe budget for the kids would be three dollars a season.

The last two weeks, I have had a lot of packages coming. Therapy items for E, clothes for A, cleaning supplies for the house, a few books to read for my upcoming trip, maybe some clothes for me on the side. Just to try on of course. Then return.

The first three packages that were delivered were delivered on the same day. The mailman set them down on the porch and said, “Got some heavy ones for you.” I used the diaper excuse, It’s the default, the first one that comes to my mind. The next day, I got a few more. “Oh, looks like they decided to send out everything I ordered on the same day LOL.” The next day, even more. So embarrassing. Saturday I get some with the husband home. Some of these packages I am getting are literally a humongous box with a tiny little box of cabinet locks for baby proofing. I am sure the mailman just loves to watch the drama unfold as he delivers his Saturday goods. Out of excuses, the first reaction that came to me was one of faux shock. If you can’t beat them join them, right?  “Whoa, so many packages? What the heck?” I ask. Then I shake my head incredulously as I take them from him, as if I am not the one who ordered the J. Crew boxes piling up in my arms. As if it is a burden and the company is randomly sending me boxes of free clothes to annoy me.

Today, the mailman just delivered one package. It was the last of them. The final try on of shoes for A. From Mini Boden. Mini Boden is based in the UK. So even if the mail man did not know what was in there, it was written on the customs form on the box with the price stamped right on it. No excuse needed. I opened my mouth to say, “A, some shoes, for you to try on and probably we will return most of them,” but I was out of energy.

Hoping For What?

As humans, I think we are designed to look for the light at the end of the tunnel. We gear up all the energy that we have, get a running start, and do everything we can to get to that light. But what happens when that light is not as visible? What happens when there doesn’t seem to be an end in sight?

I’ve been having meeting after meeting lately while we prepare to transition E out of Early Intervention and into the next phase of services. Part of this is a Future Planning Meeting, where we talk about what my hopes and goals are for E. I remember the meeting last year. I was optimistic. I had heard so many success stories about kids who after a year of therapy, their progress really took off. The speech kicked into place and things just got easier. When E’s third birthday rolled around, I remembered that meeting and I felt a loss all over again. A loss for all the hopes that I had for him in the past year. My original hopes were adjusted when he was diagnosed, and I had acquired new hopes. E actually has progressed. He has made a lot of changes. But as any parent of a special needs child knows, with progress, comes new difficulties. E becomes more aware of his environment. E becomes more anxious and sensitive to those things around him. E becomes more fearful. E becomes destructive as he learns to explore his environment.

As he has learned to say certain words and babble I find myself so excited for him. So excited that he is learning how to form sounds, and say words that are functional. E hears a door open somewhere in the world; on the tv, upstairs, in the neighbors house (That E Boy has supersonic hearing when he wants to). He says “door opennnn”…. I get so excited that he is aware enough to notice that the door is open and to say that phrase. I start to think, “Wow he is going to talk. I am so happy for him! Things are going to get easier.” But then that excitement fades as it stays the same. The same standstill. Last June, he imitated his first word, I was elated. A year later he does not imitate that word anymore. He does not imitate more words. He imitates a different word. I am ready for the progress, but it seems to just be parallel progress.

Preparing for my next Future Planning Meeting, I thought, “What are my hopes”? The meeting came around, and they asked the questions. “What is E doing differently this year? What has he overcome? What are his strengths”, and lastly, “What are your hopes for him?” Adjusting what I want, I told them I don’t have specific goals. My hope? For him to be happy.

Having a child with autism, it often seems suffocating. I get to a breaking point where it seems I can not stretch anymore, but then against all odds, I do.

Today, I heard a crash from the basement. I went down to find E shattering an heirloom. Picking it up again and again. Smashing it into thousands of pieces. The one thing I had that had been passed onto me from that grandparent. My heart broke. I was devastated. I can tolerate him pouring fruit loops all over the floor. I can tolerate him ripping a key off of my keyboard. I can fix those things. What I can’t handle? Him destroying something so irreplaceable and special to me.

Hope can be dangerous when you are dealing with autism. Every child is so different and I have no idea what to hope for. I hope that I can handle the next year. I hope that I can be a good parent. I don’t hope for things to get easier, and I don’t hope for progress. I want it. But if I hope for it, I don’t think I can handle the pain from that being crushed. Again and again.

Will He Talk?

Will my child ever talk? It’s a question that I’ve obsessed over for the last year. At the beginning, I thought about it compulsively. I would ask anybody and everybody. I wanted somebody to tell me that yes, he would talk.

We talk a lot in his appointments and therapies about progress. About E’s individual progress. That his timetables are different. That I can’t compare him to others at his age, but instead compare him to himself several months ago. Example. Several months ago, he was only babbling in vowel sounds, now he has been able to add consonants to his babbles. At the beginning, I tried to be patient with his progress. With his progress in OT I was patient, but with speech.. not so much. I always wanted to know if certain progressions meant that he would start talking in x amount of time. ‘If he is making those movements with his tongue, did that mean that he would for sure be talking by 3?’ I had to know when he would talk.

Several months back, I had just finished touring an Autism Center for E. I asked my question to the director. ‘Will he talk? Have you had children like E come through who end up with functional speech by Kindergarten?’ Her answer was the same as always. ‘You know autism is a spectrum. You know every child is different.’ Frustrated by the lack of knowing once again, I started thinking about why E talking was so important to me. What did it mean to me? What is my job as a mother? To make sure my child is safe, loved, and happy. So what if he doesn’t talk? What does that mean? Does that mean he can’t be happy? Does that mean he can’t be loved? No. I realized that me wanting E to talk, was me hanging on to the last shred of hope and normalcy for E. If he talked, somehow his autism wasn’t as serious. He could be one of those miracle stories that you hear about. Who seemingly grow up with no traces of autism left. In that moment, E’s autism finally sank it. With it came complete love and acceptance for my boy and what he was capable of. As long he was happy, that’s all I realized I really cared about. The fear over that question finally melted away. Whether or not he talked stopped mattering as much.

Do I still want him to talk? Yes, but now the reason behind it is different. I want him to talk for what it will do for him. I want him to be able to express himself. I want him to be less frustrated.

There are still days I ask that question and still days I get frustrated. But, now they are fewer and far between.

Coping.

Sometimes it totally catches me off guard that E has autism. I look at him asleep in his room and I see the pictures of him on the wall as an infant and it just hits me. The reality of it all. That my baby E has autism. It’s like a punch to the gut and I feel like I have had the wind knocked out of me. Especially days like today where he is really hard and the autism is more obvious. I look at that those old photos and with them are my expectations of what I thought he would be like and what I thought my life would be like. I expected him to be a typical little boy. He would go through the same stages and milestones as A. I see those pictures and it’s like they were another lifetime. It’s almost as if that boy still exists out there, and that mom still exists out there. And then I am here. People try to be optimistic with me. They say, he will be fine, he will do great. I hope for those things too, but what they don’t understand is that I am still dealing with the loss of what I thought he would be. I am still grieving my old life. To me in this moment, Autism is everything. I am grateful for what I have. I am grateful for the resources I have, but sometimes I am still just sad. And defeated. Sometimes it takes every ounce of energy to run after him again. Or to ignore the intense embarrassment I feel when he is shrieking and I am taking him out of the restaurant while everyone watches. Or feeling anxious as some stranger at a store comes over and tries to play with him and tries to be interactive. I pray that he just looks at them once so the moment will be over. Sometimes it feels like I have been dealt more than I can handle. For those days, there is writing and David Sedaris.

Janmohamed Pseudo Christmas Letter

If you’re not sick of hearing about us yet, here is our year in review.

 

Janmohamed Family Highlights

January: Eric accepts new job working for Mars, the Mars responsible for making M and M’s, in Toledo, Ohio. Mars recently acquired Iams Pet Food, and Eric is working at one of the Iams Plants. I fly out to Ohio to find us a home accompanied by my sister because Eric was busy tying up loose ends at Young Living. Found a home in 48 hours. Harassed the landlord incessantly, telling him I was an amazing tenant over and over again. I amassed 26 back and forth emails before he called me to tell me that I got the house.

February: Mars packed us up and moved us, very stress-free. Flew to Ohio. Thought it would be fine not putting A in a preschool for the rest of the year. Majorly mistaken. After 7 days of pure chaos, I found a preschool for A before we even had our internet set up. After touring the preschool and liking it, I asked them if they could take her the next day. They did and I was able to finally start unpacking in peace.

March: Trips back and forth to Lexington, Kentucky to visit the sister. These continued until July when she moved. I do not know if this is correlated to us visiting her every possible chance and setting up our big air mattress in the center of her living room each time. I tell myself it isn’t.

April: Trip to the Windy City. The kids traded off throwing up in every restaurant we went to. We amassed an entire new wardrobe, because amazingly after the second and even third time we never thought to bring a change of clothes. Target for the win. And the Chicago Outlets.

May: My birthday. The most important time of year. Oh and E’s I guess is in May too. We had his birthday party in Lexington. Surprise Surprise. Aforementioned sister also graduated with her Masters from University of Kentucky that weekend so most of the Bourgerie Family was in town. 

June: Beach visits. Went to Detroit. A visit from the Uncle and Aunt in Minneapolis. They were on a niece tour visiting all their nieces East of the Mississippi. We were honored to be on the tour. Humidity in Toledo starts to get thick.

July: Fourth of July in Kentucky. Trip to Utah. Stranded in Houston. We finally made it to Utah in the exact time it would have taken us to drive. Lots of Bourgerie and Janmohamed family time. Takes a bit of adjustment for the kids to get used to time change and new place.

August: Home from Utah for the last half of August. A few more beach days. Lots of park days. Approved for Respite Care and my life changed. At the start, I usually just sat in a parking lot and ate Burger King and thought, this is what life is really about.

September: I go to New Orleans for an Autism Conference. Temple Grandin and me become pretty much BFF’s. My mom and I walk around the French Quarter. We find out the difference between Jambalaya and Gumbo. I eat Beignets and tell my mom all about New Orleans based off of what I learned in Princess and the Frog.

October: Visit from Older Sister. We visit Motown Museum and I buy the most comfortable sweater of my life. Everyday, sister would say, Oh that looks amazing, I really want it too. I think I am going to go back and buy it. When we go back, she changes her mind. Instead she buys a bunch of who knows what from The Henry Ford gift shop.

November: Visits from both Grandmas and a Grandpa. A’s birthday. Grandma Janmohamed is here for it. We host a party in our humble abode and surprisingly it goes well with 13 kids and half of their parents. Kids get their faces painted and have balloon animals. We go to the Art Museum twice so we can play in the kids family center, and both times it is closed. We become very cultured in the actual art since no choice but to visit and I am shocked at how well the kids do. Thanksgiving brings the Bourgerie grandparents. Amazing food made mostly by my mom. I do make some green beans and a quick bread. We see Coco, but on our way there I spill gasoline all over myself, because apparently I can’t pump gas. My mom tells me she will be sick if she has to sit by me, so I buy myself a Christmas present at the mall in the form of a new outfit. You think by now, I would bring alternate outfits for the whole family.

December: Christmas tree, Hallmark movies, and Frankenmuth- the Christmas town.

Most insane year of our lives, but also filled with a lot of fun times. Merry Christmas