What is Autism???
According to Oxfords living dictionary:
A developmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behaviour.
&
Normal: Conforming to a standard; usual, typical or expected.
also: (of a person) free from physical or mental disorders.
We have made it through another holiday. This time we spent our time in Scotland visiting family, and more specifically, celebrating the 80th birthday of Gran. I’ve had a long summer. Filled with therapy runs and sessions, hours upon hours of driving to and from as well as learning from the therapist who work with my boys in the house for hours each day.
At first, I admit, I feared summer…now it is nearing the end and I find myself sad that it is over. Currently my boys, ALL of them, and I, are on a plane journey for the first time in a long while…home. We made it to Scotland and now it is time to return. Although seeing the family was amazing and wonderful, definitely worth it for all of us, we are (my small family and I) happy to be returning to our “home,” in CA. I put that in “” because for the first time in many years we all feel as if we are returning to our home. Before, one or the other of us, my husband and I, have always felt a kind of loss…or sadness, upon leaving Britain. Perhaps that is because we started there. Had our first house there. We dated, married and became pregnant with our first, A, there. Being in the States has not until recently, felt like “home” to either of us.
Strange thing is…life is FAR more complicated and our carefree selves have been put upon a shelf to admire…the way a photo album of memories is admired. Yet, here we are, my two Autistic kiddos, apparently being “too loud” (they are not) and my husband and I, are on a plane home. Home is California. Home to our forever home. We have the support and the friends we need to see us through the difficult times, and each other to keep us going no matter what…
I’d quite like to do a speech to the young man sitting in front of my severely autistic son, the one with the headphones who has given nothing but dirty looks and finally got the gumption to ask (politely) if I could have my kids be quiet. They aren’t being loud or annoying, however, to the uneducated, the unknown…the ignorant…yes, my youngest makes sporadic sounds from time to time. Mostly they are happy and cheerful though. There is a baby crying in the background, neither of my kiddos have cried or screamed or been whining…and believe me, after such a long and trying journey for anyone…let alone autistic boys…or any kid for that matter…that is an accomplishment!!!
Anyhow, I sit here in a sort of rant…wondering if I could have responded better…watching him, trying to control my kiddos outbursts without making them worse…they are young, they are jet lagged and tired. We are on the second leg of their LONG journey home…the place they’ve been asking for for the entire two weeks of “holiday,” FINALLY! We made it. We survived and we even managed to have a good time along the way. Our way. The Autism way.
Is filled with ABA therapists, OT & groups, speech, special early school year classes, not to mention our more “normal” stuff like swim lessons and Kung fu, play dates…with the same old people who can be patient and tolerant enough with my kiddos so I can relax…mostly.
We have a pool. And yesterday we had multiple ABA therapists due to come, a group meeting for building social skills to attend…these take up HOURS of our day. Generally I am grateful for the break, the help, the education I gain. However…yesterday I found myself in a deep low. Depressed. When do MY kids get to have summer vacation? When do they get to make their memories that they will look back on fondly??
So you know what?? I cancelled the ABA’s for BOTH of them. We jumped in the pool and dove for coins and treasure. We played tea party under water and laughed and played for hours in our pool! We had whatever we wanted for dinner, within reason of course…we stayed up late watching movies. We had a summer’s night. It was wonderful and SO needed!!! I wish I could give them more of this. I wish I didn’t need the welcomed break and reassurance of a therapist appointment to help them (and me) navigate this world of autism. But at least we had one awesome day. A play day.
I almost forgot for a moment we were any different from anyone else. That our life is often, quite difficult, turbulent and uncertain. For a day and an evening…I mostly forgot and just lived in the sunny moment of my two brilliant, loving, fun boys.
Here’s the thing about Autism: it’s a forever thing.
It’s a lonely thing.
It is exhausting.
So no matter how much I read and try to understand, try to find ways through it…something else will emerge; like a new tic, self harm, regressions, etc….
With each hopeful turn and celebration, right around the corner is the bottom of the pit again.
Autism is like being Bi-Polar. Ups and downs. Extremes.
I forget on the ups and find hope for the brighter future, then get smacked in the face. Literally by one of them. The other starts hitting himself in frustration and self loathing. I lock myself away and cry.
It’s a forever thing. This Autism thing. For-ever.
There was a time before Autism became a part of our lives. A time when my oldest was speaking single words here and there, but he was a “boy” and that was ok. My youngest was an infant and a contented little guy. Easy in comparison to our “high-need” first-born. Where A. needed to sleep sitting up until he was almost 1, and on my chest at that, often with a boob most of the night…G. did not. G. slept like a “typical” baby. He even took a pacifier rather than my breast to soothe himself between feedings. G. did not suffer any reflux problems and was generally quite content and easy to please. In short…I remember thinking…YES! I got an easy one!! I deserved it after all the sleepless nights I had been enduring with A. The amount of clothing we went through for each time he had thrown up between feedings…I’d say it was spit up but really, it was more projectile than that. The thing is, with A., he was my first and the only baby I had ever truly known before him was my little sister, who had lactose intolerance and often spewed as a child. I did not know any better. Furthermore, A.’s pediatrician did not seem concerned as he ate plenty and was in the 90-100% for his weight and height!! He was born big and stayed big. No malnutrition to worry about with him. G. also was a good weight and height. So other than the “high-need” part, everything seemed fine.
Good friends of ours called A. “Deedles” because their little girl, born two days apart from him, was speaking sentences while A. only said,
“Deedledeedledeedledeedledeedle…”
I was an attached parent for both boys which was a lot of work but felt like the only way, the most natural way, for me, to parent. Again, I was so grateful for the baby being easy, as I was still needing to sleep with A. between us and G. was in a makeshift co-sleeper made out of his cot with a second mattress added. A. slept more or less intertwined with me, G. slept alone until feeding or nappy change time. This all worked fine. Eventually we even got A. to sleep in his very own big boy bed, as long as we helped him fall asleep first.
We had some great times, snuggles with A. and special outings to the bookstore where A. could play on the train table for a bit, then we would find a new book together. He loved our special chocolate milk treat at the end. G. would be happy in his pram. A. loved going to the park! He loved the swings and I would have to push him for what seemed like forever, but that was great as it was easy and he always had the best smile swinging. We would swing for so long I often had to stop once he turned pale as he got motion sick. After recovering we would have a picnic in the back of the car. Too cold yet to sit on the grass and anyway, A. loved this routine and special time he got to sit back there with me.
My sister lived with us. Three glorious years!! She was there for my first baby birth and there for number 2. Both A. and G. had her there as another nurturing mother when I was needing a rest or when one demanded more of me the other got her. It was a perfect situation and we all loved these three years.
I blamed a lot of the changes happening with A. on the fact we moved away from my sister who he was very close and attached to. No doubt, this did cause some psychological turmoil for him. It did for me! G. began crawling and being more mobile. Wishing no time at all he was walking. Between a mobile toddler and A. turning 3 things quickly changed.
New doctors were found in our new home. Closer to some family, further from others. My husband travelled all the time for work. I was alone with the kiddos all the time. Things rapidly started unravelling. A. became angry all the time. Frustrated. I often cried and wondered if the move was going to permanently damage him. G. was eating dirt, climbing brick walls, into cupboards. He loved noise and music, A. couldn’t handle it at all.
The first time I really wondered if we were all going to make it through was around the first three or so months of our move to the house we bought. I longed for our simpler days of A. playing with the hose water which was plentiful back East, and yet scarce and dry out in the West where we now resided. We had moved away from my sister, my main support, my best friend, but she was going to follow once school was finished for her. I just had to count the months….
Having moved closer to my side of the family, I rarely saw anyone. Often I would drive the many hours south to see my Mom and friends from childhood. It was all I could do to keep me from falling apart. Yet, seeing how different our life was to theirs made me feel more estranged. Isolated.
No one really came to visit us. No one could find the time in their own busy lives. We had moved so close compared to all the various places I had been living before…but it was not close enough for the support I was needed during this time.
Constantly I was reminded of the great life we had, before ASD reared it’s head and became the center of our world. Back to the time before the symptoms were there, or known, or obvious. Back before life became impossible for me to cope with. Back to the early days when it was just me and A. and life consisted of sleeping when he slept, and showing him the world through experiences.
All this looking back prevented me from going forward for a long time. Still, I find there are days, like today, when dropping G. off at his school and he has to be forced from the car and pushed into the hands of a para…crying because the transition was too short this morning. He wanted a bath instead of playtime…everything felt wrong to him and his world was upside-down. A. has a field trip today though and I can not be late! It is not fair on him to always be missing out because of a problem his little brother is having, and vise versa…
Days like today I am in constant turmoil. Wondering if I am doing it right??? Am I making things worse or better? Can they get better than this or is this our reality forever? Will they be happy? Self-sufficient? So many questions about the future and so much uncertainty, I find myself looking back. Feeling nostalgic for a time long gone. A time of ignorance and bliss. Sometimes I have to really work to get through these moments…remind myself it could be so SO SO much worse!!! Be thankful for my boys health, our health, and the stage of the journey we are at. I need a reminder that it is, in fact, OK. I can miss old times, I can worry about the future because in reality, as parents we all do. No matter the circumstances. It is normal. We are normal. And…we are going to be OK. We will.
Sometimes I forget about them. The milestones. After G. was diagnosed with ASD, I unsubscribed to the parenting sites for N-Typical kiddos. Every email and milestone check point felt like a slap in the face. G. doesn’t hit those milestones, and A. will hit them, but just and typically, not exceed beyond that point. All kids develop at different rates, and with ASD, development could mean so many things. Wonderful things.
For the past couple weeks, maybe 3 now, A. has definitely shown he had a birthday. Turning 7, he is not at the same level of his peers socially, academically we are still struggling to assess him as it all depends on his mood and environment. Mainly he struggles with motor skills, such as writing. This is trickles down to all the subjects as writing is so essential even in Kindergarten. However, he also struggles with auditory processing making instructions difficult for him to follow. He manages though with help and support and is doing alright. We want him to do more, the more we know he can do…but that is another subject for another time.
Today was a Kung-fu day. A. has been doing well with his private 15 minute lessons. The studio is smelly. I hate sitting in there waiting for him, especially as it is by all the shoes in the cubbies. I find it very distracting and overwhelming. A. somehow does not notice the smell, or if he has, does not specify it. The noise is his biggest challenge. Two mats, one large studio. Many instructors, even more kids, multiple classes going on at the same time! It is a sensory nightmare, really. I will not even go into the lighting. Anyhow, in spite of all this, A. is able to be be redirected and focused and typically will learn part of one move at every lesson. Many moves are two or three parts or more. Last week, he was able to do two parts of a move! This was wonderful, I thought it was a good day. Today, he did 3!! Three parts, three different movements coordinated together to make up a move. This is HUGE!! To top it all off, he REMEMBERED the name of the move! in the past he has needed to be prompted and reminded before he could repeat it back. Today he just answered back, exactly what the move was called. Proud, shocked, excited. So many emotions for something kids his age are doing with no problem. For us, it is HUGE. He turned 7 recently. The instructor asked if he had hit a milestone recently, and I appreciated she did not specify where he should be, just that it was clear he had. My little boy is growing, developing and maturing every day. I wanted him to feel the bursting in my chest for his achievements. He seemed so…’whatever’ about it. Which is probably how he should be feeling. It is a normal feeling of any kid who thinks we, as parents, are daft for getting excited about a new skill they feel is second nature to them. Funny how it seems to go over his head that a few weeks ago, one part of one move was a real struggle for him. To him, in his little world, it just is now. It is natural.
School has also noticed a big developmental surge lately. Math has suddenly clicked with A. Reading is becoming easier and concepts of figuring out a word, sounding out, etc., are finally clear to him. Other things are big too. Socially he has rekindled a friendship with a kid he fell out with due to his limited verbal expression. Things are going well for A. “Well.”
Little brother G. is also going through some kind of developemental growth. Reflecting on what life was like even 6 months ago…it is amazing how far he has come. Socially, he says hello to everyone, goodbye. He is seeking friendships, actively asking for kids to come over. Suddenly he is able to understand a schedule I give him and accept it. Most of the time. He loves his visual PECS boards and we utilize them daily. G. recently got his own little robot ball. A MiniSphero ball. Generally I would have to make it move on his iPad for him while he watched it and chased it round. All of a sudden he decided to do it himself. I tried several times to show him and get him to do it himself, but no. However, once G. decides he is ready for something, he just does it. All on his own. His own time. My little control kid. ABA therapist L. also noticed changes in him. We have started to introduce a new phrase for him. He has “I want” down pat. Now we are working on “Can” questions. Took a week, then again, suddenly today, he just came out with a “can” question for me. I was so excited!! With his limited speech I am always worried he will stop talking again. Or not progress after a certain point. At 4 1/2 I worry. A. picked up speech so quickly and easily. G. not so much. Speaking is a challenge. But today he independantly used the new phrase and I am beyond excited!! School too, has noticed big improvements. They seem to think moving him up to a moderate SDC classroom for TK is a real possibility. We will have to see.
Milestones are huge. Our milestones are different, but they exist and we keep seeing them develop which is amazing! I am grateful for each and every one, big or small. Each new milestone comes at it’s own pace. Nothing like the parenting blogs of Typical, but just as amazing and important non the less. After a long, hard slog of not much happening, a lot of work and little baby improvements, I am so happy to have this little surge. I am equally grateful it is happening for both my boys simultaneously, as it gives me hope for their future. It makes all the hard work, sweat and tears, screams and meltdowns worth it. They are worth so much more than society gives them credit for. I hope this will change in time for their adult lives…and if not, that we will be able to prepare them for whatever comes their way.
Today, was really, an amazing day for my eldest. He had a great day at school, worked very hard to be “good.” This breaks my heart because he IS good, but so often he feels he is not because his reactions to, well, just about anything he’s adverse to, are extreme. However, today, there were no outbursts, no slammed doors, no time-outs or breaks. A received several stickers, what he referred to as “rewards,” for his amazing ability to share and give today. He was building legos at school, it’s a rainy day and they’re all stuck inside…again…which is very difficult for A. Still, his friend noticed that A had built a big ship, and attached to it was the ship that Friend had made earlier. When Friend asked for his part of the ship back, A quickly broke it off and gave it to him, no tantrums or disputes. This is a proud moment for a momma like me. These are the moments I savor and remember when having a bad day, a trying day, what I call an “Autism-day.”
Forgive me if this term seems offensive to some. I call it this because some days, the struggles with the spectrum are so plentiful, so big, messy, emotional and relentless, the day becomes all about coping with ASD rather than just raising my boys.
Potentially, it could have been an Autism-day. Generally, it would have been as I am on my own with the boys while my husband travels for work, so no break. It is a Wednesday, no ABA. No respite. Just me and my boys. It shouldn’t have been an autstanding day, but it was in the end.
We started our morning off with an accident. It isn’t really an accident, but what do I call it? G, the 4.5 year old, decided to NOT go to the potty. He does this a lot actually, so I am always watching him and looking for signs. I caught him trying his best NOT to go, and demanded he go to the potty. Urgently, after much denial, he ran to the ONLY potty he will use currently, the master toilet, and pulled his already soiled pants down. Fortunately, we got to the toilet in time for the big one, but still, a sanitation clean up was required. I say “we” because it is a joint effort. He needs me to help him to the potty emotionally as much as I need him to use the toilet and not a diaper. To say that potty training G has been a struggle is an understatement. But that’s another story.
So there we are, 7:45am and a mess. Chaos and stress ensue as I rush to get another set of clothes, convince him to put them on and help him into them. Then rush to hurry the older one up, as he dislikes being rushed. The art of it is to rush him without him realizing he is being rushed…truly, it is an art. I’m proud of my masters in it.
Off to school they go! I pray for no shootings as I live in America and well, it is the reality of our lives and one of my many paranoias and phobias I deal with.
Post school. A comes home and is amazing. Glowing with pride in himself, I am beaming! He remains happy in spite of the weather, and we go to pick up G at his school when it is time.
G wants to go swimming. Always. I convince him on this rainy day, the huge fort we built at home is waiting and fun! Yay! Then we get home, he wants swimming. G means, he wants to go out by our pool which is still in winter mode and cold. The day is gloomy but warm, spring is trying to grow into flowers and buds, the birds are singing and chirping. A is having a great day…so why not? OK.
First potty then pool.
No potty.
Yes. First potty THEN pool.
NO. NO POTTY. POOL.
back and forth we go. Eventually I think, he must have gone at school, he is so determined. Reluctantly, we go out to the pool, I remind him of toilet, where it is at, to not go in his pants etc.
Meanwhile I check on A. He is crouched down, trying to hold it off…the potty! ARGH!!!! I silently scream. Patiently, I say “potty break, now” and he jumps up and goes. He needed my vocal cue. Alright, it’s alright, I caught it in time. No accidents!! He went happily. A has washed his hands and is playing again. I am out by the pool checking on G…who is holding it in….literally.
POTTY POTTY POTTY! I shout urgently. Trying to stay calm and not sound annoyed I have had to bounce this ball back again.
NO potty…..
really?? ugh….
back and forth…the urgency is undeniable, we run to the potty…he explodes in a flood of pee before he can get his shorts down.
This is not typical boy stuff. Do not tell me it is, I already know it is not. This is not an age appropriate thing. Please, do not try to reassure me it is all “normal.” It just isn’t and I’d like to say that it’s ok, but really, this is the one thing that really frustrates me and gets me down. Will they EVER figure it out?? I worry.
We wash up. I start the laundry. G refuses new shorts. Half naked we return to the poolside where A is. Not long after, A has another sign of needing to go. Running around frantically pretending he does not have to go. I shout out another cue…demand, whatever.
POTTY. NOW.
He goes. Thankfully, his awesome day continues and he does not argue. We are all good. Everyone is still happy.
Timer goes off. It is Wednesday. We have to get ready for martial arts class.
Everyone is happily complying! Another autstanding reaction I am not accustomed to frequently getting. Stellar.
Lesson goes great! A does fabulously, no meltdowns, no protests. Teacher gushes with compliments. G even did amazing!! He actually came inside and waited the whole 20 mins, climbing all over me, but not running around, not disrupting the classes, not being difficult. I am amazed!
After the lesson we are home. Urgency for the toilet again for A. He waits too long, he feels bad, the explosive pressure wash is everywhere in the bathroom, except for of course, in the toilet.
SIGH.
OK. No worries, had to wash the uniform anyway. The belt gets in the way and makes it difficult for him to go to the bathroom on his own, I should have taken it off first thing. My fault. A tried and other than waiting a bit too long, would have gotten there if he had better access. A note to Self…take off belt after lesson!! (I will forget, again. I always do).
Simultaneously, outside, little G is running around. He has to go, que-POTTY!
We go, but I can tell we are already too late.
Another load of sanitizing laundry. Wipes would be handy…no more of those around, I’m stubborn like that. Bath.
Dinner. We all eat together! SO great having a meal with my boys, they’ve come so far to be able to sit and do this without entertainment of a TV or iPad. We make jokes, G sings songs, and we eat. They go out and play, I make tea.
G is ready for #3. Always 3 times a day for good old #2. We run. We don’t quite make it.
New Jammies. Another load of sanitization.
My own shower sounds wonderful, but no time now. Playing trains with my boys. Together. This never happens and I want to be a part of this simultaneous interaction.
Timer goes off. Brush teeth, bed time routines.
I start with G. He goes down quite quickly, exhausted from his long day and late nights this week. Next A. Waiting happily watching his show. Being the big boy he is now at 7. He too, falls asleep quickly.
Now I sip tea, work on this blog. Reflect on our day.
The potty thing is a big deal for me, but really, just for me. They are good all day at school. Great in public places considering the sensory issues of using a public toilet. It is just at home. Here they are safe. Here they can just BE. Here, we have our “normal.”
Today was not our normal, but it is a part of what can be at times. I am thankful we had an outstanding/autstanding day. There were bumps, but emotionally we were good. Socially we did phenomenally!!
I admit it, I fully thought that my baby G was going to be my “normal” one. He slept well at night from day one. He did not live on my breasts which A did. He enjoyed being held but also enjoyed being sat in a bouncer or swing for periods of time. When we introduced solids he ate everything, anything. G was easy going, flexible, went with the flow. Opposite his brother, A, who had trouble changing from tasks. Where A loved and thrived on routine, G was kind of ‘whatever’ about it. The older G got the happier he seemed to be playing with noisy objects, something A could not tolerate. A played with Tupperware as a baby, quietly putting lids on and off, stacking them together, whatever. G wanted the metal bowls and a wooden spoon to pound on them. Just as you would see in a “typical” boy. Playing drums was surely in his future. Talking came on naturally, all be-it perhaps a bit slowly. But still, he had words and was adding to his vocabulary daily. Except Mommy. Of course, Dadda, common among all kiddos to say Dadda first. G never threw up the way A did after feedings, he never got sick in the car from motion, he was my easy baby. Turning into an easy toddler. Always determined, gets that from his Daddy, he would try and try to do what his big brother did. If he wanted something he would continually go for it until he got it, not to be redirected or distracted. What a great character strength!
I will never forget the day it all went away. First it was the speech, that I noticed anyway. Standing in our kitchen, our main hang out with hungry boys, G wanted something from the pantry. He had been asking for what he wanted in single word questions such as “milk?” “crackers?” etc. This day he stubbornly (or so I thought) grunted and pointed up at something in the pantry. I tried to pretend I did not know what it was he wanted, by this time very much used to encouraging words out of A through speech therapy. However, he refused then melted down. Never had I seen him, in my memory, just collapse in frustration like that. As if I was being mean by making him say what I knew he had the word for, he had asked so many other times for crackers, I could tell by his precise eye to finger, squint pointing, that was what he was aiming for. I picked him up and asked him to show me, he went right for the crackers, as I suspected. Alarmed at his reaction and refusal to speak I chalked it up later that night as a stubborn phase. Perhaps all the attention A gets with school teachers and speech was making him jealous. Maybe he wasn’t well, had a sore throat…something physical.
We all know that was not the case. I lived in that denial for a month or so. Then came time for A’s check up with his developmental pediatrician. I had concerns about A’s aggression at school, his constant frustration and meltdowns had escalated again as he progressed to a new classroom. We went and I fully expected there to be more with A. She agreed that the SPD (Sensory Processing Disorder) would affect the way he responded to things. I had done lots of research on the disorder and was way ahead of her, already seeking an ABA therapist out. I felt good she was impressed by my proactiveness with A, then she said, “and I would like to have G assessed.”
My heart stopped. I think deep down, I knew, I expected this, but my denial was so strong. My will for there to be one kiddo I didn’t have to lose sleep over, manage like delicate eggshells, navigate the crazy world of special needs with no map of where to go…
All I could do was stare for a moment at him. Then I asked why? Why him and not A? A seemed more “autistic” than G. Sure, he was being stubborn and not talking, but was there anything else that lead her to believe he may need to be assessed? And of course, there was plenty. G did not make eye contact once. Never responded to his name, even as she asked me to call for him. He was no longer speaking, for at least a month now, and all the other little things I had tried to bury and not notice. The sleep disruptions, the meltdowns, the general unhappiness my once very happy easy kiddo had had, was gone. He was quiet, withdrawn, very much a different kid. It was not jealousy, depression, changes in routines or absence of his brother being at home all the time. It was something bigger.
So there we are…we embarked on a long journey to diagnosis, took 6 months and a terrible experience with a child developmental psychologist, but we had the diagnosis we feared and tried so hard not to believe. Autism Spectrum Disorder.
This grief was not like the grief I had been working through with A. A was so capable, talking and continuing to hit his milestones, even if only just on time. A progressed, granted with help. We found an ABA therapist to help with his behavior, and it was helping. Things were getting managed and the future was bright for A. Perhaps it would be a bit of a struggle, being so sensitive to things and emotional, but nothing I could not understand or handle with some help. With G it was so different, so much scarier. He stopped, he regressed, he withdrew. He never fully attached to me the way A did, he always preferred his Daddy. Now it seemed he was further away. Unreachable. The more I read about ASD the more I tried to find hope. But it is hard with the materials out there. So many things about kiddos don’t match our experience, and if they match at all, so much of it does not relate. Each kid is different, after all. I understood the difference factor, the individuality, but these kids I read about had personality, were further into their journey than we were. I could not foresee G’s future, even a glimmer of what to expect.
Overwhelmed I completely melted down. It was not immediate, a few months or so, but it happened. The denial was preventing me from taking care of myself. Everything took (and takes) so long to implement, yet time is of the essence with these ASD kids!! I share this because I want others to know two things. First, it is OK. You are not alone no matter how much you feel that way. We are all alone together, which is crazy but true and also so reassuring once you find that out. Second, I hope to prevent others from the meltdown I experienced by sharing and emphasizing how incredibly IMPORTANT it is to take care of yourself!! Get therapy, talk to your doctor, share with a friend, family, an anonymous blog or private social media group. Whatever you can do to get a break, frequently. Get respite, a sitter, a cleaning crew to help out once a month or more. Yoga, run, exercise in any form. Watch a favorite show once a week, read a book routinely. Research!! Educate yourself about ASD or whatever it is you are dealing with.
Two things I will leave you with here…
Remember, on a flight you are to fit the mask to yourself first before helping others, including your children. And, people are afraid of what they do not know about. Knowledge is the light in the darkness. The more you know and understand the less frightening it becomes.
I am a mother of two loving boys. Our house has been full of snuggles and kisses and hugs and affection since my oldest was born in 2011. Other than the fact he was not a talker, more of a babbler, I never had ASD cross my mind. However, by the time my second came along, I had a 3 1/2 year old still not talking, nothing more than Mommy and Dadda, and a handful of words between the “deedle, deedle, deedles.” One person brought up the idea of getting him assessed, but my pediatrician, who I held in high respect at the time, assured me he was a boy, that they spoke later sometimes and that it wasn’t to be worried about. After all, A would hit his milestones even if only just, every check up.
Eventually we moved across country, with 6 month old G and 3 1/2 year old A seemingly taking it all in stride. I admit, I was stressed, excited to be back on my home coast, but trying to cope with two little ones and a busy traveling husband. Not to mention my main supports were left behind.
After a new pediatrician was found, A was unable to complete the check up due to his extremely upsetting screaming and desperate attempts to not get touched by the doctor. I had never seen him quite so upset before but figured it was all the changes and new doctor etc. I was not impressed by the doctor myself and we left upset and shaken.
Fast forward many meltdowns and tantrums later, my sweet A had turned into a terrible toddler finally! What had we done by moving him? Was the move worth it? Would I ever get him back? I was devastated and could not pin point one thing but many big changes in his life which I was sure caused all the troubling behavior.
Jump to pre-school. Terrific idea. I hated the idea of leaving him anywhere without me, being a baby wearing-attached parent to both my boys. However, I needed a break!! After a few weeks I was called in for my first meeting with the head of the school and his main teacher. Suggestions of evaluations (for what??) and his lack of speech and language abilities were brought up. So, we found a new doctor, took him in, and she suggested an Occupational Therapist evaluation, as well as starting him with Speech Therapy. We went for what we thought was a diagnostic appointment. It was another terrible experience.
“Take this brush and brush him 10 times on each arm 4 times a day.”
That was it. No explanation or communication of what it was. Finally, after we probed the evaluator a bit more she reluctantly said there were areas of concern which qualified him for Sensory Processing Disorder and that he would be starting treatment for that.
Gee. Thanks.
I brushed his arms twice, saw no point and binned the brush. (Have yet to see how it would have helped him). We did not return to the center.
Fortunately, the speech therapist was amazing!! She did a full speech and language evaluation, declared where he was speech delayed and how she could help. We started treatment immediately and the improvements in his speech blossomed to sentences. I mean, a lot of it from movies and shows, but talking and communicating his basic needs was HUGE! He had WORDS!!! We were thrilled. Things started to calm down a bit…
To be honest, my husband and I were in mixed and completely separate stages of Grief. Yes, grief. Because that is what it is. I did not come to realize this on my own, I had help getting there, but we all, as parents of special needs kiddos, will go through these stages as we come to know and understand our special needs kiddos. It is natural and OK. Remember that. Allow it then live on.
So my husband at this point was in denial, he stayed there a long while. Also quite normal, quite typical for one parent to be more in denial than the other. Very important to understand this as it may help you navigate and survive the difficult times ahead. I struggled with his denial thinking it was just blind optimism. Looking back I wish we had known better what was going on in our little family unit, perhaps the hard times could have been easier…however, now, we are stronger than ever and we have made it through. That is really, all that matters.
As for myself, I believe I was going through multiple stages at the same time, bouncing around the depression and denial, anger for sure, bargaining, and perceived acceptance which turned out later to not really be acceptance at all, just a mind trick I was playing on myself. Eventually, I got there, but the journey was overwhelming, lonely, scary, and draining.
Little did I know that I was to be broadsided…
autstanding 