Our story

Blogs… everyone’s writing them, right? So how hard can it be? Well, will definitely find out 🙂 I have so many thoughts I feel the need to put them down.

So a little about myself… daughter, sister, wife, mom, recruiter by trade, CNA for my oldest special needs son, dentist, chauffeur, cook, baker, doctor, cleaning lady, nurse, teacher, librarian, shopper, personal everything (cleaning, driver, teacher, you name it)… have I forgotten something? But I got off topic here. So this is me – a Romanian native, moved to US 15 yrs ago. Mom to Paul (my baby is 14 today *sniff sniff*), a very special boy in every sense of the word. Mom to Laura & Dan, 8 yr old twins with remarkable personalities. Wife to Sorin.

I think I have a great life, I feel accomplished. I have a great husband, terrific kids, great things (car, house, job etc). So then why do I feel incomplete at times? Because I am. Let me explain… 14 yrs ago we had Paul. First born. First grandchild who was supposed to be everything for us and hos grandparents. Only fate played us – Paul was born with (what we would find out 7 yrs later) a rare genetic syndrome – SATB2-Associated Syndrome. He is non verbal, with lots of dental issues, still not fully potty trained, with behavioral problems, mild autism, OCD like behavior, low muscle tone, seizures etc. Yes, I am not complete, I will never hear him say “mom”.

There are a lot of families out there, 150 children identified so far. So I shouldn’t feel all alone, right? There are other parents who know what I’m going thru and fight the same fight. But I do. I do feel alone sometimes, and when I do, all those “what if’s” come to life. All those “why’s” start to show their ugly heads.

I am not at peace with this, never was and never will be. I still don’t know why I had to become a special needs mom, why Paul had to be born this way, and I may never know. But it hurts. It stings. It paralyzes me to my very core. I don’t want to hear “you are strong” and “God only gives [such problems] to strong people”. Guess what?! I am not strong, I don’t want to be. I want a son who can say “mom” and “I love you”, who can eat by himself, who can use the toilet and brush his teeth by himself, take a shower by himself, get dressed, fix himself breakfast, tie his shoelaces, make his backpack, clean his room, do homework & read books, watch a movie, go out with friends, have a birthday party with his friends, play football (or whatever sport he wants), ride a bike, get a girlfriend, enjoy every day of his childhood, teen years and adulthood. I want a normal child.

I don’t need your encouragement, compassion, sympathy, judgement or understanding. I refuse to be strong and put on masks. I refuse to pretend everything’s great. I want a normal child. I am angry and screaming inside, this is not fair! There are so many women out there living in much worse conditions (homeless, no food, no money etc) giving birth to healthy babies. How is that fair?! There are drug addicts giving birth to healthy babies. How is that fair?! There are unwed and teen moms giving birth to healthy babies and then give them up for adoption or worse. How is that fair?!

And yet here I am, here we are… a special needs mom with a special needs son and her own special needs family. Trying to live a normal life for my (our) sanity and our twins’ benefit, trying my best & the impossible for Paul, enjoying every moment of a great day, dreading every second of a challenging day.

Happy, tired, sad, accomplished, incomplete, angry, ecstatic, friendly, selfish, normal, special needs. All these and so much more…

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A Year in Review

It’s been awhile, I know. It’s been quite a year (HA). As we get closer to end of August I’m reminded my special son is turning 16…. At 16, I was going to parties, playing hookie at school (well, every once in a while), spending hours at the public library to write papers, reading action novels, having a blast altogether.

At 16, Paul will be fully potty trained, able to pull pants up & down, take clothes & shoes off, help with chores (load the washer, load/unload dishwasher, set the table, put trash away, clean up his room), able to put slide-on shoes on (on the right feet), able to walk & run on uneven rocky terrain, and able to get his point across on a voice output app.

Differences are worlds apart! Yet I never thought I would be free from diapers/pullups 4 months ago. Never thought I would have a full night’s sleep ever again 15 months ago. Never thought I would live with a constant lower back pain (on and off) 12 months ago. And here we are: within last year we made great progress on life skills and ADL. Developed a larger food variety, especially fruits and veggies. After a brutal and intense 2 weeks, we are fully potty trained (Paul still needs help wiping); after months of practice he is getting better at setting up the table and loading the dishwasher (he is quite the pro at unloading), he’s great at making his point across (either signs or easily navigating his voice output app), getting much better at dressing & undressing (HA!).

However… mood and behavior remained the forever constant with occasional spikes. Add puberty to the already existent situation and kaboom! Paul became quite reluctant to go out (as in go to school, zoo, restaurant or out in the community). Its a fight – always. He asks to go, is excited to go, yet when we actually have to get out the door, he flops and doesnt want to go. We had that happen during last school year, when we went on vacation, when we went out to one of his favorite restaurants, when we wanted to go to zoo. We went on vacation – we fought the entire drive to the airport (hair pulling, scratching, screaming etc), airport navigating was ok (partly due to getting a wheelchair so we could move around easier), flight was doable, the vacation itself was great (he even enjoyed swimming) but leaving the hotel we had to physically drag him to the car (everything else on way back was ok). We wanted to go to zoo – took 3 tries and when we finally got on the freeway, he started puling my hair and glasses (just the two of us in the car), trying to get his seat belt off and sliding off the chair; needless to say, I turned around and went back home. We went to one of his favorite restaurants (Qdoba; quick in and out), sat at separate tables – him and i and hubby with twins; still when it was time to leave, he flopped and hubby and I had to physically drag him out to the car. [and there are a lot more similar stories]

With puberty though, he did become more aware of his body odor. Now he is not that resistant to taking showers or changing his day clothes often 🙂 He is more vocal (figuratively speaking as he only has 2 words – yes and no) about what clothes to wear, when to get cookies to school, what teachers and friends should get gifts, what sibling should be helping with chores, who should be cooking or going to work etc. He is quite funny ordering folks around.

All in all quite the year for him and all of us! As we’re getting closer to a new school year start, my only hope is that his mood and willingness to go to school improves 🙂 my lower back can only take so much strain…

 

Should’a Could’a Would’a

We finally saw Wonder – me and the twins. A lot of emotions and a lot of ideas going thru this little brain of mine; related to the movie, SN life in general and politics (the mass shooting in FL) especially – I know, such an unusual combination…

While I *do* sympathize with all individuals with a physical disability (and I’m not being ignorant or “smart”) I think that these individuals have something my son doesn’t have – words (well, most of them). They can express their feelings, they can say if/when they’re hurt, they can yell at mom or dad when hormones attack, they can scream ‘bloody murder’. Mine can’t. And he doesn’t have the cognitive level other 14-going-on-15 have either.

Let’s start with the movie – it touched even the most hidden places in my heart; you know, those little places I hoped and prayed stay hidden, those little places where the hurt is intensified 1000000 times over. It truly did. My heart cried for the parents when they dropped him at school, cried when his friend talked behind his back, cried  when he was sitting by himself at lunch time or when the girl approached him, but beyond all I was balling when he earned the award.

I was trying to picture Paul and his school day – does he eat by himself in the cafeteria? Well no, not really. He needs help to make a choice of what he wants to eat. He needs help carrying the tray. He doesn’t eat with people around him, so he needs to sit at a separate table. He doesn’t eat, he likes to look around; if nobody’s looking at him, then he eats – well, more like wolfing.  He is surrounded by friends – same non-verbal friends who don’t know how to properly communicate so they struggle – all of them – to have some sort of interaction. Sometimes they succeed, sometimes it ends up in a fight or behavior escalations. I can’t drop him off or pick him up either – his mind compartmentalizes everything and school is school, home is home; mom doesn’t fit the ‘school’ pattern; as such, teacher & therapies don’t fit the ‘home’ pattern. I can’t volunteer either, as he has a meltdown if he sees me at school (see above reason). He doesn’t know when or if people talk behind his back and bless his heart I like that – it stings the hell out of me but he doesn’t know. And every once in a while he comes home with an award – best student of the month usually – that fills my heart with pride and all but then the very next second I realize he doesn’t know the meaning, he doesn’t get it. He’s excited about it because his teacher gave him the paper and said “Great Job” but that’s it… so my heart aches and I cry again. For him, for us, for his siblings…

Last couple weeks have been a bit tough – mostly at school. Some drops at home, some behavioral escalations but still manageable. For a few months he has been walking home by himself (don’t panic, bus drops him off in front of my house, he walks down/up the driveway) – we’ve worked on that for a while and he finally let go (still have to walk him to the bus in the mornings). But there were a few days these past 2 weeks that I had to physically pick him up the bus floor and pull him along the driveway. One day I had to go to school to pick him up as he would not get on the bus (first in more than 3 years). And today… vandalized the classroom on a rampage. I don’t know whether is hormones (started puberty) or the moon or the temp changes, or the world. I just want to help him. And I don’t know how. Because I don’t know what he’s going thru, because he can’t tell me and because I bet he himself doesn’t know or understand. So here we come full circle – I almost wish my boy had a physical/visible disability but had a voice and cognitive levels to be able to help me help him.

Where do the shootings come into place you might wonder? (not a problem, sometimes I wonder too) Well, same piece – not-verbal & not cognitively where he’s supposed to be. God forbid something happens at his school! I don’t know how I would react in a crisis mode, but I bet you my life he would behave 1000 times’ worse and put himself in (even more) danger. It’s not like I can give him a cell phone to dial 911 or call me or daddy if anything happens, not like I can put a tracker on him (he takes everything out, finds it and peels it off), not like he can wear a bracelet or anything on him to identify him as a non-verbal, escape risk, highly autistic to first responders either. So we’re stuck. And hope every morning that I get to see him (and my twins) again at the end of day. That nothing (like the FL shootings) happens at their school. That we get to enjoy them one more day. That we [my kids] get to let hormones run wild and stomp our feet and demand tablet/tv time even though homework’s not done, that we call each other names and turn our backs to mom & dad when they ask us to read or help with chores… all of these, even Paul’s classroom devastation today pale all of a sudden, when put head to head with a shooting.

I know I should be happy my Paul is healthy, that he can walk and use his limbs, that he doesn’t have a serious illness, that he is happy, that… that… I know! But deep down I can’t. I don’t know what other moms go thru (those who have really sick kids or with no full use of their limbs) but I can’t. I cry for him every second of every hour of every day. I cry for my twins for I know the life they will have taking care of Paul once we’re dust & dirt. I stopped asking “why” and “why me” some time ago; now I simply cry for what it should’a could’a would’a…

 

 

My Paul

Its been a long road so far, long, difficult with a lot of ups and downs. But we didnt give up. We got up and tried again. Fourteen and a half years ago we were blessed with out first child – Paul. A 10-pounder who came 44 weeks later; in spite of the most perfect (yes, I realize the oxymoron) face I had ever seen to that date, he was taken away from us minutes after his birth on some half-ass mumbo-jumbo reason (from heart failure, lung infection, to lack of brain oxygenation, pneumonia etc). After spending 10 days in NICU, he is released on our signature – we couldn’t have been more thrilled, we get to be parents.

Life with Paul as a baby was rewarding but also difficult. He dropped in weight in the first couple of months, would only eat certain foods, wouldnt really pay attention, enjoyed being in his own world, no peer interaction, no imitation, not meeting milestones… you got the picture. As a toddler, the differences became more visible – lack of words, no imitation, no interaction with peers, poor coordination, lack of teeth, lots of drooling, weird walking/running, always seeking adult guidance/interaction. As years progressed so did the gap; while kids his age were learning to read & write, ride a bike or play ball, he was struggling with holding the pencil, opening a book and flipping thru its pages, unable to comprehend even the most simplest commands or directions, still being fed by mom (mostly soft textures) etc.

We were always told that each child develops at his/her own pace, so we kept hoping. Until it became clear that Paul was not your typical child. So the tests and doctor visits and therapies began, lots of them; lots of fights, tears, frustration, endless tries, white nights, more crying and more tears and more sweat and repetition and more doctors and more tests. And then all of a sudden a first milestone, and a little accomplishment. Followed by more tears, crying, fights, sweat and repetition. And another little glimmer of hope. And the same cycle for 14 years. There are a lot of labels for Paul – special needs, autistic, nonverbal, aggressive, mildly social, incapable of a lot of things (writing, fixing an elaborate breakfast, tying his shoes, dressing by himself, using the restroom by himself, brushing his teeth independently, doing math, knowing his currency etc), OCD and many many more. But one label he will never have – quitter. He doesnt know how to quit, he always tries. He fails the first “x” times, still doesnt quit, he tries again.

He went from the child who didnt know how to hold a pencil (no grip, no fine motor skills) to the child who types a short paragraph with 95% accuracy; from not knowing his name to typing his first name with 100% accuracy at any time and his last name with 70% accuracy; from being nonverbal and not using any communication means to using voice output apps, adaptive sign language, understanding & responding appropriately in both English & Romanian; from needing hand over hand help/guidance to go up & down the stairs (or any terrain) to running up & down the stairs; from no motor skills to playing with & kicking a ball; from being 100% dependent on mom for feeding, dressing, bathing, hygiene etc to being partially independent (still ways to go to full independence but great progress); from not knowing how to open a book to being able to follow texts and actually reading (can answer 3-choice questions after reading a short text); and SO much more. I know he can do more than this and he’s proving that every day.

He is a social butterfly who yearns interaction with peers and adults, and total attention, who loves his siblings and family a whole lot, who always wants to please and have a purpose. I may never hear him say “mom” or “I love you” or “I’m sorry” and that may be my biggest & greatest grief; but I know I will always have his love, his unconditional love – he doesnt know how to trick, ploy against or be evil. The mean moments are mostly due to his disability; his heart & soul are as pure as the day he was born.

The old and the new…

It’s been a while since my last virtual adventure 🙂 you know, life happens – school, job, kids, God forbid major changes 🙂 One of my SATB2 mom friends asked for a couple paragraphs about Paul so I started thinking about my own little literature adventure. so here I am again..

I know Holidays are tough, even on typical folks. SN is a different kind of rough / tough, right?! From the overall excitement that transfers over to SN kiddo,  getting things ready (cleaning, cooking, baking, chores etc), school projects being due, to kids getting on winter break, stores overflowing with Christmas stuff, caroling everywhere and everything else in between… enough to get you go crazy, right? and eventually transfer your craziness over to your kid(s) and/or your SN kid(s).

It happens. I wish I had a secret recipe, a perfect combination, something, to help with the many meltdowns, yelling, screaming, things not being done (in time or at all), but I don’t. What works for other kids, doesn’t work for mine – guaranteed 😉 So then I improvise. I do my best to adapt many “tricks” (that work on typical kids) to what I know works for Paul (most of them don’t but I feel I am a bad mom if I don’t at least try – “hey, it worked with another 14 yo, why wouldn’t it work for mine?”).

But I digress… back to our adventures during fall season. Like most SN kids with autistic features, Paul is very OCD – very. And he fixates on major holidays (surprise, right?), from Halloween, to Thanksgiving, Christmas and Valentine’s (I am pretty sure he doesn’t understand what they represent but is attracted by them). So fall and winter seasons are great for him – from the very pure joy you can easily read on his face all the way to the presents he gets to give and receive.  And the scariest meltdowns and screams. Usually… but not this time. Which came as a pleasant surprise – is he maturing, has he started to understand more abstract things (like holidays, meaning behind them and traditions)? Not really sure what or why but this year was different (and I really hope I’m not jinxing it).

After a fairly uneventful school start in August – he got back into school routine fairly easy and quick – we got to celebrate our anniversary (early October, one week earlier than actual date) in Las Vegas – with kids, of course. And yes, it was a few days after the mass shooting so the place was even crazier than normal. Great flight & ride to hotel (awesome hotel by the way, great warm water lazy river), good behavior, eating out (just the 2 of us) etc. Until I opened my mouth and said – “lets go out and take a walk on the Strip, see the water dance in front of Bellagio”… so we go. All good until we get to Bellagio (about half an hour into it) to a Strip overflowing with people enjoying their evenings walk, taking pictures etc when my Paul snaps. Big time. Dropping to pavement screaming and raging time, trying to grab me or anyone else in his immediate circle. So I move away giving him space, he darts after me, I try to block the kicks and hands, not so successfully at first. I am trying to restrain him all while Sorin is telling me to move away and give him his space – “what if some is recording this and calling the cops on you?” “Good, then they can calm him down”… few minutes pass (all while it feels like hours to me) and slowly Paul starts to get back to calm (cant remember what I had to promise him to calm him down). The rest of the walk was fairly uneventful, the remaining visit was great. He really enjoyed seeing airplanes taking off and landing and flying close above us. All in all, a good week away from home.

Next – Halloween. Paul really loves to give out gifts and candy is no exception. Everything needs to be done a certain way; for the last few years he’s been asking for the same costume (a vampire cloak) and this year we had a new addition – a white shirt with vampire teeth – perfectness 🙂 So the candy have to be in a certain bowl (of course orange and Halloween-y), put in a certain place (on the little table by the door), Halloween-y candles and items throughout the house. Not a whole lot kids are ringing our door (one of the longest driveway in our neighborhood) but the few that do, Paul loves to give out handfuls of candy – everybody is happy: kids who get more candy than normal, Paul who gets to play host, and mom & dad who get to enjoy his happiness and not get sick (eating all that leftover candy) 🙂

Thanksgiving meant the week off for kids, not so much for parents 🙂 and a week-long visit from family. For his OCD self and his program being a bit off, he behaved (just a couple of incidents ending with mom yelling and Paul answering back in “style” aka dropping to the floor or throwing stuff around). But he did enjoy a full house.

Christmas is a special time – Paul talks about Santa non stop. Really. He is afraid to go near Santa, likes to watch from a distance. But he talks about him all.the.time. At school they have a Holiday craft fair and he always buys little items for all of us, to put under the tree. Every year. And he has pretty good taste – this year he got tree ornaments for the twins, a necklace for me, an insulated coffee cup for dad. We had Carolers stop by, a couple get-togethers with friends and Christmas day visit to Church (2 hr drive one way) all in one week. Lots of stimuli overload right? Lots of chores (and less time attending to his needs), lots of baking and cooking and new people swarming around him. And he behaved. He was great on his own turf but he was exceptionally good at Church. Four hr drive (back and forth) plus 2-3 hours at Church – Santa visited, we stayed for lunch as well. He watched the special caroling program kids from Church prepared, waited in line to get lunch, ate in the same room with other kids, watched in utter disbelieve as other kids (typical) ran around screaming and yelling and being mean to their parents and other adults.

End of year / New Year’s was pretty much uneventful – and now we’re getting ready for school again (such a looong winter break, no snow and spring-like temps did not help at all).

Paul started puberty a short while ago; I’ve been told puberty is super crazy, super moody, hormonal and absolutely wacky. So far for us its probably the best since elementary school. Yes, he has his moments but dont we all?! Yes, he’s driving me crazy with asking the same question a million times a day, constantly seeking me and needing my hand, being selfish (we go to the restaurant he wants, watching the TV program he wants, going to bed when he wants, playing/eating/reading what & when he wants etc), only accepting Dan & Laura when it suits him, etc. But he also understands more & better, has made tremendous progress (for the last progress report he is well ahead of his reading, typing and comprehension goals, life skills goals, social & emotional goals), does chores without prompting, initiates more communication, goes potty by his own volition and without prompting/reminding. And these are just a few I can think about now. Yes, he may never ride a bike, learn to play board games, read a book (in the traditional sense), learn or master currency, go on a date, have a family and for these my heart cries every minute of every day. For him, for what he might have been. But we also learned to celebrate every minuscule achievement even if its just a high-five or a “good job Paul”; the joy you can see on his face when he accomplishes something is priceless!

So learn to celebrate the minutes and the seconds not the weeks and years, learn to enjoy every little accomplishment, take one day at a time! Have an outstanding 2018 full of joy, peace and happiness!

Fragile

I have tried to be strong this week, for my kids and myself. Sorin had to go on a business trip so it was me and the kids. Nothing unusual, right? I’m not the first or the last this happens to. There are hundreds of single moms out there or whose husbands travel and they take care of the house & kids. Right. Every family is different and I wont compare myself to the other moms and our needs (mine and theirs) as they are unique to each of us.

We had everything this week, from nice talks with my supersensitive & emotional daughter to personality fits and huge meltdowns. And when everything was starting to look up for us, I get yet another blow…

I got a call from Paul’s school to pick him up (first such call since he moved schools 3 yrs ago) because a peer pushed him into a cabinet and he chipped his teeth. His school is about 45 min drive for me (normally about an hour for any normal driver but I’m European LOL) and all this while I go thru hundreds of scenarios. When he was 2 he fell and chipped his upper front teeth, nerves got exposed and we had to do root canals. Oh the nightmares… so that was just one scenario. The worst – broken mandible and reconstruction surgery… see, the nurse couldn’t really take a look at his mouth & teeth as he doesn’t typically open his mouth big enough. She only said – he needs to go to a dentist. So I collect my kid – I half hear what nurse & teacher tell me about what happened – he looks ok-ish, lots of bleeding and a bit dizzy.

We get home and he’s hungry (hasn’t eaten at school) so I fix him some pasta & tomato sauce (one of his fav) but he cant eat. We pack up again and go to the dentist (made an appointment on my way to collect him), have to drag him to the chair and hold him tight – still bleeding and clots of blood visible on his gums. Luckily, only a couple chipped teeth (enamel layer only, maybe a bit deeper but no exposed nerves) and cut gum, but no fractured mandible. Shortest ever dentist visit! Not even 2 minutes. But the end result – music to my ears. Although he needs to be on soft & liquid diet for a few weeks, bruises on face take longest and are the nastiest looking to heal (per dentist)… by the time we got to the dentist (2 hrs after the “bang”) a ‘nice’ purple bruise made its appearance on his chin (documented as well).

We get home (after I buy him a burrito for being so compliant at the dentist – only way I got him in the car), he is able to swallow about half of the bowl (not even sure he actually chewed the rice, beans or tomatoes) and then goes to his room and everything falls quiet. For about half an hour when my twins get home (asked a friend to pick up from school).

And he sleeps for about 4 hours (never ever happened before) and I’m already terrified how the night will be. Before Sorin gets home from his 5 day work trip, Paul gets up and he wants to eat. And that’s when I see his swollen face, bruise looks purple-er and bigger, his lip looks like a ton of Botox gone really bad. And my heart plunges. Twins are horrified and ask me who did this to their brother. Was he bullied? What happened? Will he get better? Sorin is even more terrified of the state of Paul’s face.

Late in the evening I get a call from school’s director who checks up on him; at this time I am pissed as hell and planning on filling a complaint for neglect. She kinda tones me down, tells me what happened and what they are planning to do to avoid these issues in the future. This helps a bit. We have the IEP next week so we will revisit this issue at that time again. And proceed from there…

All the ‘what-if’ scenarios drained me and I feel like a zombie today. And again I remind myself that not all SN kids are similar, the needs are SO different for each of them. Yes, mine can walk and use his hands, but cant tell me if he’s in pain and doesn’t understand a lot of things – like why he was dizzy yesterday or why we had to see the dentist or why he cant eat solids for a while or why he’s still bleeding or have a swollen mouth. And much more. The incident also reminded me of how fragile life is and how, in these moments we (moms and dads) find the inner strength to care for our kids and be brave for them, putting on our brave masks.

A friend asked what is (in our opinion) the one word that best describes the SAS kids… the parents all had wonderful answers and they all apply (from amazing to unique and everything in between). But now I have another one – FRAGILE.

 

Different, Not Less!

On my Facebook feed there is an ad for games and toys for special needs kids – and the slogan is “Different, not Less!”. I love it! My Paul and ALL the special needs kids (regardless of issue – Down, Autism, Asperger’s, ADD/ADHD, or less visible conditions) are nothing LESS than a typical child, they are just different. In many many cases, GOOD different; they are more compassionate towards others in need, they understand better how cruel life is and that you have to fight for every little thing – of course I am referring here about the highly functioning, highly cognitive SN kids.

The lower functioning or lower cognitive SN kiddos (like my own) are still not LESS than your typical kid! They may not understand a lot of things, they may struggle in school or with learning & maintaining skills and tasks that come natural to your typical kiddo, but that doesn’t mean they are less; they’re just differently built. What they learn will stick with them for a much longer time (due to all the repetition and frustration and hard work). They appreciate everything more and better, because they had to FIGHT thru tears and frustration and repetition and pains (sometimes real physical pain) to get it!

Teach your typical child to look UP to these SN kids not down. A SN kid can teach your typical kid a whole lot! We all know in this day & age life is certainly not rosy or fair (I dare you to prove me otherwise!) and our kids have to struggle more than I ever did to accomplish something, even the typical ones. Imagine the SN kids – they have to struggle hundred times more! The low functioning ones, even more than that!

Celebrate the difference in our kids (SN or typical)! After all, everybody is different, even the typical kids! Everybody is unique, from the DNA strain to physical features, thinking, behavior etc. Everybody is  different, so why should my SN kid be Less than your typical one?!

We should all be reminded, especially today, that we are all lucky to be alive! (and yes, I used the term “lucky” but notice that it is not in relation to my son’s disability 😉 ) While remembering 9/11 and all the sacrifices and all the turmoil and terror, also remember that regardless of having a typical or SN kid, your kid is alive, and you are alive to be there for him/her! Celebrate them in all their typical-ness or special-ness! Today, yesterday & for ever, every minute of the day, every second of the hour! Today I am reminded that all my (our) fights and tears and frustrations and lack of patience are nothing compared to the tears and anguish those who lost a child/parent/family member or friend must go thru every day and every second.

She Said / He Said

I have been waiting for the perfect moment to write a blog from my twins’ perspective – life with a SAS kid (aka Paul). I have Laura with me and she’s whispering some last second thoughts to incorporate 🙂

So… twins were a surprise, a nice one, but still a surprise (as in having 2 instead of 1). You can say we were blessed, boy and girl, great health, no issues etc. Paul was almost 6 when twins arrived; he visited me at the hospital, he looked at them and waved them “hi” and that was it. Once they came home, he kept saying send them back 🙂 “Only-child-syndrome” evaporated. Life with twins as babies was… interesting and demanding and different. Oh so different. Different dynamics (and not only because they were 2), different feeding rituals, different perceptions, interactions etc. That was an eye opener. All of a sudden my girl was interested in clothes and dolls and everything girly & princess-y. And my little boy wanted to get into everything, he loved boxes (making cars and transportation mediums out of them). Yeap, different like day and night from Paul as a baby. Good different.

As years passed, Paul started to imitate them more and more. From sucking thumbs (Paul never put anything in his mouth as a baby) and crawling, to hiding toys under couches/pillows, play with sippy cups or pretend play and everything in between. And getting more vocal. And “arguing” with the twins over everything. The interactions between Paul and the twins have always been interesting and dynamic, a “love and hate” relationship in all its glory.

There are as many positives as there are negatives of life with a SAS kid (at least in our family). Laura brings up a good point – “SAS” – is [Paul] SASsy? 🙂 well, he sure is, most of the time, I think all our SAS kids are. Paul taught Laura and Dan sign language – for which I was so grateful; before twins started talking, it really helped (“more”, “mom”, “food”, “water”, “sleep” etc); the “teaching” continued beyond twins aquiring of English and Romanian languages. The best aspect of this relationship is Paul’s endless love for his brother & sister; despite all the fights and hair pulling and shoving aside etc, it’s easily noticeable in the family & friends interactions. He loves talking about his “babies” (aka the twins) to everyone who would listen; he makes it a point to mention to his teacher & para, his therapists etc that he has 2 “babies” at home, D and L (he would then show the signs for each letter).

But there are negatives too. I, as parent, notice more negatives than the twins, on a more mature level. However since the blog is from my twins’ pespective, I will transcribe their 8 yo views – [Laura] “I dont like he throws stuff at me, that I cant have too much time with mom becuase she always needs to take care of Paul and his needs first. I dont like I cant have playdates at home all the time (or when I want) because Paul doesnt behave well when strangers are in the house. I cant eat breakfast when I want because Paul needs to eat first, otherwise he will have a fit/meltdown. And he (sometimes) orders me around – to bring him water, pour his milk, help with breakfast, bring wipes etc. I dont like he watches superheroes fights on youtube, that makes him want to fight with us and girls dont like fighting. I dont like when he goes into our room and makes a mess (trying to look for a particular toy). … He tends to spit (blow raspberries) when he plays and I dont like that because he usually comes near me and spits on me. He has his favorite armchair and he doesnt let us sit in it to watch tv, he always shoos us away. I dont like when he laughs so hard that he throws up and mom asks me to help her clean.” [Dan] “He can be very annoying – he likes to repeat over and over and over again what he wants (food, bus, school, airplane etc) or ask the same question a thousand times; I dont like that. Sometimes he laughs at me when I cry and that makes me more sad. He likes to push me around and I want him to stop that; he likes to “steal” my toys (cars, legoes) but he eventually gives them back.”

But the twins have a great love for Paul, despite all the earlier hair pulling, scratching, showing aside etc. Laura continued ” HOWEVER, I love him a lot; he loves to give me hugs and kisses. I like that he teaches us signs every once in a while. I like that he likes to help a lot with chores, he likes to help me put toys back. He always asks where we are (if not at home), and talks about us to his teacher or friends.” Dan mentioned that “He is very nice sometimes and very helpful. He gives me my toys back without me asking.”

And of course there are the “what if’s”, the “coulda woulda shoulda”… [Laura] “I would have liked Paul to color with me and go on walks with me, and defend me at school or take my side. I would have loved to go to the same school [with Paul and Dan] and really feel like I have an older brother. I would have liked him to help me with homework and chores. Or be able to go to the movies. Or sit at one table together when we go to a restaurant (mommy needs to sit with him at one table and us with dad at a different table). Or be able to travel more, go swimming; or sit with mom on the airplane (she always has to sit with Paul)…” [Dan] “ I would have loved to have a typical brother because I want to play with him with cars and legos and planes, and I cant, he doesnt understand how to play, only likes to put them in a row. I would have liked him to be fun and play with me (not by himself), he doesnt know how to play “Pirates” or other games we play at school. Would have liked to be able to build a base outside or a snowman in winter. Would have liked to go sledding, or have a snow fight, or go on a bike ride, help me program the drone (he just got a drone and daddy is too busy to help today). I would have loved him to be able to play Minecraft with me (instead of me playing alone), build Lego with me.”

All these and much more break my heart; hearing my little ones wish for a typical older brother (when have they even learned the meaning of “typical” versus “special?!) is a pain I will never be able to get rid of. And as years progress, I want my twins to have as much a normal life as possible, I want them to enjoy it as much as I did when I was their age. Hoping they do!

Lucky?!

This week I read a comment that said “we are lucky” [having a SAS kid]. Well, I feel anything BUT [lucky]! Honestly! My kiddo is older so I think I have a better idea of the SAS journey than a parent whose kid is much younger. And I still don’t feel “lucky” – I fell angry and frustrated and happy and envious and understanding and nervous and afraid and so much more. But “lucky” is not what or how I feel; and I’m sure there are plenty of SN parents who agree with me.

Was I lucky when Paul was born and was told he had lung issues / infection / pneumonia / breathing issues / heart failure / and a few I cant remember right now? Was I lucky when he started getting blue around his mouth while eating and forgetting to breathe? Was I lucky when I spent one whole day working with NICU nurses on having him latch and couldn’t and kept thinking I was to blame? Or was I lucky when, once in school, teacher kept calling us to pick him up (Paul doesn’t want to sit / stand / eat / write / get off bus etc) that we almost lost our jobs? Or when in 5^th grade his (new) teacher kept him in a corner all day, sent him home soiled (aka not changing his pull up all day) and was verbally abusing him (borderline harassment) that he was screaming his lungs off (once home) and being aggressive with us? Or when this same teacher called Social Services on us when I pointed out a huge bruise on his lower back/butt that wasn’t there in the morning but was there once he came from school (I dared asking whether he fell at school or bumped into something)? Which one was my lucky moment?!

The struggles day in and day out take their toll (and much more). I always worry I don’t do enough; I soak up as much new info as I can (stole the Spry toothpaste idea a SAS mom recommended, works wonders, thank you S!!!), look for new therapies or ways to improve his skills / sign language / daily living. I am happy when I read about one of his SAS friends that they accomplished a new task and envious at same time that my kid (excuse me – my TEEN) isn’t doing that (or hasn’t mastered it yet, though he’s older or has been working on same skill for much longer). What can I say?! That’s how I’m built!

There are days when I feel I am not enough for what he needs, or not doing enough – sound familiar? I had to learn (the hard way) that it’s ok; we are only human and we’re doing the best we can and hope it’s enough. I had to learn to let go, to don’t sweat the small things, to accept my/our/his reality and to never lose hope – most definitely the most difficult lessons for me! There is only so much you can do for your child (SN or typical), only so many battles you can fight! You need to preserve your sanity for your other kids (if you have more than one), yourself and your SN kid. And you can only do that once you learn to: 1. let go; 2. don’t sweat the small stuff; 3. accept your reality; 4. never lose hope. (Of course the occasional glass of wine [or your fav poison] helps too!;) )

Once you accomplished all 4 steps above you may ask “now what?”… Now you live and you teach your SN kid how to take his/her first step, communicate, dress/undress, eat by him/herself, put on shoes, go up and down the stairs, use the toilet, make his/her bed, do laundry, read/write, do chores, help around the house, do homework, interact & behave appropriately at school/in community, become independent and much much more. Some skills will be mastered in no time, some will take months or years to master, some will be acquired quickly and lost a few months after, some will be your (and your kid’s) nemesis… but all this will not happened because of luck! All these will happen because YOU tried and worked to make it possible and struggled every second of every day of every skill/task, because you pushed and didn’t give up or lose hope, because you said “Yes, it is possible! Yes, s/he can!”

No luck in any of these, just work, ambition, perseverance and sweat. So then why should I feel lucky? I am not! I will always aim for more for Paul (and my twins) and push him outside his comfortable zone, who knows?! maybe I will get to hear him say “mom” before I turn to dust… (and that’s *still* not luck, just determination and work)…

Let’s Meet!

Have you ever had that feeling that something was missing, that you are by yourself, nobody understands or knows what you’re going thru? I’m sure you have (even though you may not acknowledge 😉 ) I certainly had! Until August 2^nd in Little Rock 🙂

Paul and I arrived to the hotel a bit later than what I anticipated and only had a few minutes to get our room and freshen up before we had to go meet the other families for the opening dinner and the informal meet & greet. When we finally got to the conference location – huge room full of parents and kids running around laughing, screaming and playing) it was nerve racking for me – “how will Paul behave?”, “will he have a meltdown with so many strangers around him?”, “will he start pulling my hair or drop to the floor?”, “will I cry?” – all these questions and a hundred more rushed thru my head, felt my head spinning and took a deeeeep breath. We’re going in no matter what 🙂

I remember coming thru the back entrance so first we had to make our way to the front door and find our name tags. As soon as I had my nametag on, it started 🙂 “OMG, PAUL!!! How are you?” and moms kept pouring in around us and I started recognizing some of you and some of your kids. Hugs and kisses and more hugs followed. And tears (not so much visible ones as inner tears of joy), and dry mouth and more hugs and more “hey Paul”. It was a blur. I got to meet most of the moms who I have “listened” to or given advice for the past 2 years, moms who shared personal struggles with me, moms who confided in me, moms who asked for my advice or opinion, moms I felt a strong connection to, without really knowing or having met them.

Paul behaved beautifully. He loves shaking hands and hugging so with all these hugs he was in his element. We took some pictures. I started observing the other kids – so different from one another and yet so alike. Literally! Most of them could be [taken for] siblings. Girls and boys, toddlers, youngsters and teens – all sharing the same “difference” – SATB2! Same behaviors, same features, same awkward gait & running, same pulling [parent’s] hands, same lack of motor skills, same dentition problems, same inability to properly communicate, same SMILE and laughter! I don’t think I saw a child without a smile on his/her face all my stay there! If they had a frown, that was gone once they looked at their parent(s) or the other kids.

It felt surreal! Finally, after 7 years I had some closure! Yes, ME! Finally after 2 long years I got to meet J & S (I am only using initials), the first moms I connected with. It was just us for a while and then we grew to a big loving and oh so diverse family of 150 families. I felt like crying and laughing at same time, felt relieved. Relieved I don’t have to pretend, I don’t have to hide the wipes or pull-ups when going to the restroom with Paul, don’t have to have folks staring me down for going with Paul into women’s restroom or for feeding a teen who doesn’t display any (easily recognizable) disability.

There were some siblings of SAS kids too. Honestly, you couldn’t tell! They were all interacting with each other, playing, talking, pulling hands, running around, playing with AV equipment & microphones 🙂 The younger kids, that is (up to about 10-ish). The 11+ year olds stayed by themselves or with their parent(s) or family. That was very interesting to notice – not sure how many parents noticed this, I realized this fairly quickly. Amazing, isn’t it? Not sure if it’s the “maturity” aspect or better understanding their limits but it was heart breaking.

Shared a lot of stories, made friends, listened to presentations, got to talk about IEPs and share some of our hurdles, had a drink & more intimate chat with a few moms, missed all the pool fun (since Mr Paul vehemently said NO to swimming), went to clinicals for what seemed an eternity, fought Paul’s humongous meltdown in the hospital (while in cinicals), shared quite a few laughs and lots lots lots of hugs, met the geneticist who made all this possible (thank you Dr Z!!!), got to listen to other stories, had a Genetics 101, got interviewed by Chris Ulmer (went ok until he sat next to Paul and it went downhill from there, we parted friends  🙂 and later at the airport got to get my Paul & Chris picture), met some of the international parents (Holland, The Netherlands, UK, Canada, Spain) and got presents (all 4 moms from the organizing committee got some nice treats from Europe – oh so yummy, thank you ladies!), SAS tshirts and some more goodies for the kids.

Medically, there was nothing new for me. I’ve had 7 years to become an “expert” on Paul’s disability, compared to other parents who just found out or are still in the beginning phase. 7 years to get used to this life and to being limited in our accomplishments and successes. 7 difficult yet beautiful years.

But I can’t put into words what this conference meant for me as mom, wife and woman! The hurdles and frustrations and problems are easier to overcome & understand now. I know I am not alone in this. I know that for every meltdown, scream, cry, tear, progress, accomplishment, reward or good day we experience, there is at least one more happening somewhere else with one of our new friends. I truly believe this was more beneficial for parents than our SAS kids. WE needed this closure. Most of our kids don’t have the capacity to understand what happened or why we went to the conference, probably never will.

Hoping for a re-do next year and getting to meet more of US!Next time, Sorin & twins will accompany us as well (partly due to my inability to be in 2-3 places at same time :P) )

As I don’t want to share pics of other kids & parents without their consent, here’s a pic of Paul & I while waiting for our interview with Chris Ulmer, and the pic of Paul & Chris in the airport on our way back home.

White little kiddie lies…

What parent hasn’t told their kids a little white lie?! I remember when we were kids our parents did, our grandparents did too… all because they wanted to either save us from the actual (horrible) truth, or because we couldn’t understand the reality.

Well, history repeats itself. Now it’s my turn 🙂 I am not going to blatantly lie to my kids, but as all parents, I need to shield them from reality at times, or present a “softer” version. For Paul there are a few distinct categories that he understands; one is “going to the doctor” – let me explain. Ever since he was younger (talking toddler years) and we visited hospitals and doctors for tests, follow up appointments, dentists etc his first (and everlasting) reaction to “doctor” was NO (for dentist we have a very strong [HELL] NO 😉 ) So as he grew older we used this excuse – “going to the doctor” every time Sorin and I had to go out (for a very rare once-in-a-blue-moon date), for a visit and more recently spending time with the twins.

We both want to offer our kids a normal life, or as close as possible to a “normal, “typical” life. It’s only normal (pun intended). And twins do want to do stuff with mom or dad (mom/dad-and-me kind of day), go to a movie, have a playdate, go to a restaurant etc. And it’s selfish (sometimes) but it’s normal. Paul wants a mom-and-Paul date too (and we had a few this summer), but for Dan & Laura is a bit different. They are starting to really get it (Paul being different) and there are times when they claim their rights. It hurts me I cant split into 3 me’s and please them all but I am only one 🙂

So every time one of the twins claims their right and request (oh, yeah, request!) a mom-and-twin(s) date, I have to tell Paul I’m taking them (or one of them) to the doctor. And then discussion ends – only the twin(s) is (are) going to the doctor, not Paul. And everybody’s happy; twin(s) get(s) their wish, Sorin gets some free time (sic!) and Paul is happy watching TV or playing with his superheroes.

The second category for Paul is “in x (days / weeks/ months)” for whenever he asks me about Halloween, Christmas, birthdays, school/bus time, lunch, being on a plane, going places etc. We returned from Little Rock about 4 weeks ago and he’s been asking to go back on the plane ever since so I keep telling him “in 2 months” (which is somewhat true, since we’re spending our 15^th anniversary in Vegas in a month); since I didn’t want meltdowns on the way to/back from Little Rock, I started (BAD BAD idea) telling him about Halloween and Santa – so there have been hundreds of “when” questions – he now knows that “it’s in 3 (4) months” but he LOVES repeating same question 1,000,000 times a day. Not necessarily lies but just an easy way for me to get out of it with my sanity (almost) intact. Almost :).

The last category for him would be “yes” for “no” and “no” for “yes” – makes perfect sense, right? LOL “Bus tomorrow?” “Nope [hell yeah, you’re going to school, mommy needs a break (especially on Monday)]” Or “Chinese/burrito for lunch?” “Yeah [well actually everyone else wants a chicken / meatball / tripe / whatever soup], we’ll see” …

He has been having the same bus driver & para since he moved to this special school and as last school year came to an end, the bus driver (Jarrel) told me it was his last drive – he was retiring. So how to break this to Paul (who hates hates hates change?) – “Jarrel is going to the doctor”. We were able to keep the story for a couple weeks. Finally I think he realized this “doctor” is really something else but by that time (went to 2 ESY sessions this summer) he accepted & started liking the new driver – WHEW!

The hardest time for me though is doing this to my twins. Laura is a very sensitive girl (gosh, was I the same at her age?!) and she’s been telling me lately that she doesn’t want me to die – I have absolutely no idea what triggered this. But she told me this a few times over last year. So I had to tell her I will never die, had to pinkie-swear. “Not even when you’re very very old?” “No honey, I will never die, I will always be with you and Dan and Paul” – part truth if you believe that your parent will always be with you (in your heart/mind etc). But while I am trying to get to the bottom of this “existential crisis” I will white-lie to her…

I will always sweeten the truth for my kids (if I have no other choice) at least until they are a bit older and can comprehend certain situations and facts. Right or wrong, this is what I deem “necessary” for us. Our twins’ life is complicated enough with a SN sibling and having to attend to Paul’s needs, my moods, our work schedules, medications and doctors, “we can’t do that”, “we can’t go there”, “we can’t have a playdate at (our) home” etc that they deserve a little bit of “innocent” white lies every once in a while 🙂 They have their whole life ahead of them for struggles, fights and truths.