Just keep swimming

So the past few weeks have been a bit crazy since starting building blocks..  We're up to 19 hours of therapy, and will be adding another hour of PT.  I was nervous about how Joel was going to respond to adding so much therapy.. especially since ABA is more strict then early intervention.  The first week wasn't that bad since one of his ABA therapist called out all week, so it was actually a nice transition for us.  But this past week, Joel and I completed all 19 hours of therapy and it was exhausting to say the least.. especially Thursdays..  Thursdays he has aba at our house from 9-11, then he has OT at the center from 1130-1230. We go home, eat lunch, then go back to the center for music therapy group from 130-230.  Rush back home for ABA from 3-5!  needless to say by the end of the day Joel and I were both exhausted. heres what Joels new schedule looks like (and that's not including PT were adding next week) 

 Im so happy that I decided to keep Fridays open!  It's so nice to "sleep in" (i.e. not get up rush food into my babies and hurry to get them dressed, and get the house picked up or rush to the center) Plus my mom has Fridays off, so its a time where I can drop the kids off and go do an errand without the kids.  Or its good to have a week day open to book dr. appointments and not have to worry about re scheduling anything!  So I highly recommend this if your starting your journey.
 Back to Joel.. He has made AMAZING progress. He's talking up a storm, and now putting a few words together, and following 1 and 2 step commands.  His imitation is amazing!  This kid literally amazes me every single day.  No matter what is thrown at him he takes it in and just goes with it.  Also new this week, my daughter Angie started crawling!!  Which has made Joels therapies at the house a little more challenging!  She wants to be right there playing with him.  We're so lucky that we have awesome therapist that all seem to love both my kids.  Angie will actually be starting services herself this week.  She started banging her head when in her high chair, and having a paused blink, as well as arching her back.. specifically when I would try and snuggle her.. So I decided to be proactive and have her evaluated.  She actually did great, and the only area that technically qualified her for services was speech. (lol, for a 9 month old)  but I guess she should be making more sounds/noises for her age.   Its fine, it will only benefit her.  Joel didn't show any signs of autism till around 15 months.  At least that's when I really started noticing that he was behind. But up until that point his development was pretty  much spot on.  So I worry that the same regression could happen with Angie.  I don't know if I said this at any point thus far, but I'm a photographer but have had to pretty much put my business on hold with everything going on.. Between having my daughter, and Joels diagnosis, time to work is something I really don't have.  But I realized shortly after his diagnosis that I needed an outlet for myself and I was really missing my photography.  So I decided to team up with online boutiques and photograph my kids in their items. (I get to keep the stuff, they get to use the photos to sell their products)   I'm so happy that I found an outlet for myself and something that I enjoy doing. (plus my kids get amazing stuff!)   Its been a win win for everyone!   That's another suggestion I have for anyone going through this.. find an outlet.  Something that you truely enjoy.  Being a parent to a child with autism is stressful.  We have good days and bad days.. For me one of the most stressful parts actually has nothing to do with Joel.  It has to do with my family constantly trying to argue with me that Joel doesn't have autism.  UGH, it drives me crazy.  There is a reason that I brought him to children's hospital in boston to get his evaluation done.  They are one of the best hospitals in the country. Its so frustrating trying to share something with my family that's anything autism related and its instantly turned into a debate.  THE LAST THING ON THIS PLANET I WANT TO BE DOING IS DEBATING THAT MY SON IS AUTISTIC. ughhhhh.  Its frustrating to say the least.  and there are days where I just stay up at night and cry.. I allow myself a pity party here and there.. I'm not sure if it helps, but I do feel its necessary. I just feel so alone in all this.  I don't have time for friends, not that they'd understand anyway.. Its kinda depressing every Friday and Saturday night seeing all my old friends going out, doing fun things.. My social life no consists of the internet.  My every day life is consumed in my babies.  Not that I'm complaining.. after 5 years of infertility, I treasure every minute I have with them.  They are what keeps me going, they are my joy,  they are the light that guides me through the dark.  Anyway, enough ho humming... time to cheer up.. heres some recent boutique modeling photos!  :o)

 

Grinch and cindy loo hoo

 

this pic cracks me up, it reminds me of the Saturday night live skit "spartins" w. will farrel

 

my Grinch and cindy loo hoo

 

below is joel cheering on his fav team the patriots!!

Starting Building Blocks

After Joel got his diagnosis the recommended treatment was adding 25 more hours of therapy (on top of the 10 he already has through early intervention)  So Liz brought over some paper work and we went through the different companies that did ABA (applied behavioral analysis)  There were 2 main companies in my area. One was strictly ABA, (which was a little more...structured) and the other was more floor time based (going with the flow of the child to work on set goals)  I decided to go with Building blocks, which was the more floor time based.  He loves his 2 floor time therapies that he receives through early intervention so I thought it would be a good fit.   We've gone through the initial few meetings and their own separate evaluation and last week finalized our schedule.  To start off with we're adding 8 1/2 hours.  (4  2 hr apts *some a little longer)   This will bring our week up to 18 hours of therapy.   Were going to see how things go and add more  as time goes.  I'm actually quite excited to start building blocks.  Mainly because on days that Joel has a lot of therapy he seems to do better.  Building blocks is ultimately going to free up a lot of my time because in between all of Joel's EI therapies, I would work with him.  I went out and bought all Melissa and Doug toys, and I would copy and do everything I watched them do.  I swear its the reason that he's made so much progress in such a short amount of time.  I didn't just do it structured sitting on our floor, I would incorporate it into our lives, all day every day.  If your just starting this journey, my best advice to you is to watch what your child's therapists do.. and copy it in their absence.  Ask them for things to work on during the week in between appointments.  They only see your child for one or 2 hours once a week, do as much as you possibly can.  For me this got difficult as my daughter got older.  She was 2 months old when Joel started EI.  She's now 8 months old and I can no longer plop her somewhere to work with him, she needs and wants to be included as well.  It's become much harder for me to get that time with Joel these days, so building blocks is coming in right at the right time!  Its also going to give me time to spend with my daughter.  I feel like she's been sort of been put off to the side while all this has been going on.  I feel awful saying that, and its not that I didn't take care of her, or play with her, i did.  Its just majority of my energy was focused on Joel because I felt that's where it REALLY needed to be.  Thank god Angie is such a great baby.  So happy and easy going.  But I'm really looking forward to using that time to have one on one with her now. 

So Joel's father is in a union, and his insurance is a bit different then most peoples..  Although he has blue cross, his fathers union actually deals with everything.  They were a nightmare to deal with to get Joel;s evaluation apt. at Children's, a nightmare for our dentist to deal with when I brought Joel for his first dental apt. (which didn't go that well, he wouldn't open his mouth)  and now their being a nightmare for building blocks.  The person who deals with this stuff at the early intervention office had called me and let me know that he was going to have the department of public health cover it until the insurance got straitened out so that Joel wouldn't miss any services.  Well I found out yesterday that his insurance is refusing to cover building blocks at all.  Which infuriates me.  Thankfully the department of public health still is going to, but whats the point of having health insurance if they don't cover these things?  I got a call from a man at children's to just kinda check in after the diagnosis and give me resources in my local community. He told me about insurance laws and things I need to start preparing for.  I live in Massachusetts where a law was passed a few years ago that insurances HAVE to cover things like this.. anything autism related.  Unfortunately, Joels insurance is out of Connecticut.  I guess his fathers union main base is out of there.. which just sucks for us.   Especially since Joel will be aging out of early intervention when he turns 3.  (in 10 months)  Basically everything will stop at that point.  I need to make sure I do everything now so that doesn't happen.  My first phone call is going to be to the woman who pushed that insurance bill through here in Massachusetts, that they must cover all autism related charges.  He said that she can help me figure out whats covered on his insurance, and go from there.  I feel like the right people are being put into our lives at the right moments.  I'm so clueless still to all of this.  But I'm going to take everyones advice, and call who I need to call to make sure Joel gets everything he needs.  I fought for 5 long years to get him here.. now that hes here I'm going to fight with everything I have for him to get what he needs.   

All that aside, today was a good day!  I brought Joel over to my moms and let him run around in her huge back yard for about an hour!!  Then I took him to the grocery store.  (hes had a hard time in the past with the grocery store and we've done a few outings w. his therapists there to help him have positive experiences there)  They also suggested bringing him somewhere to run before going.. so that's what we did, and the trip went great!   He requested to go to the car many times.. (what he says when he wants to leave) but he did really good.  Our best grocery store trip alone!  He ate all of his dinner.... dipping every bit of mashed potatoes, chicken, broccoli and zucchini in ketchup. *YUCK!*  lol.  Unfortunately its the only way I can get him to eat lately.. so if ketchup he wants, ketchup he'll get!! (a therapist suggested ketchup or anything else w. a strong flavor to stimulate his mouth.)   hes a stuffer.. he stuffs his face till he pukes.  If  I put a bowl of cheerios down, he will stuff every one in his mouth till he vomits.  So the tangy dipping sauces were suggested to help give his mouth more stimulation.  He still stuffs, but its helped him eat when he otherwise normally wouldn't! 

I'm looking forward to Monday which will be Joel's 2nd hypo therapy appointment.  He was so scared of the horse the first 5 minutes, but by the end of the session he loved it!!!  I loved seeing him up there! they threw so much at him during the 1/2 hour session.  His therapist said he did so good for his first time, and normally they don't get to do so much therapy the first visit, but he took it all with stride!  God I love him!!  Cant wait to see him up on that horse again!!  :o)

 Below is Joel during our grocery outing today!!  Last year I had taken his pic in this exact spot, in the pumpkin display, so I had to get a new on this year! I plan on doing a side by side at some point!  :o)

The begining of our Journey...

I apoligize for the length of this.. This is about a year all smushed together.  I felt it was important to give a rundown of how we wound up where we are today..  Hopefully this blog can find someone.. a mom, dad, anyone who is just learning thier child may be or is autistic, or have any other developmental delay for that matter.  I had found a blog at one point in my journey that really helped me, gave me hope, and made me see things from a new perspective. I'm going to be honest, im not going to sugar coat anything..  Im open for questions if you have any. :o)

This story starts 7 years ago....

I had tried for 5 years to conceive... after many failed fertility treatments we moved on to IVF. I conceived my son Joel first try! My pregnancy and delivery were both rough to say the least, (if you'd like to read about that, go HERE) But the end result was soooooo worth it. A beautiful 9.9 lb baby boy!! He was healthy, he was perfect, he was more then everything I ever dreamed about. Finally my nightmare of infertility was over. Joel was just the perfect baby, he was always so happy. We got the shock our our life when Joel was 9 months old and I found out I was pregnant naturally! (Dr's told us we would never conceive naturally) Up until he was 12 months old Joel had hit all of his milestones. He held his head up early, babbled, smiled, laughed, sat up, clapped, played peek a boo, crawled, pulled himself up, said mama, dada, bubba.. and while taking his first steps, he said "I did it" over and over again. Those 3 words "I did it" wound up becoming a huge part of me. I'll get to that a little later, I don't want to skip to far ahead. Some where between 13-18 months, Joel had lost all of his words. Its not something that happened over night, I cant pin point one specific time where one day he was talking and the next he wasnt. He had said "chi chi" (bubchi is grandma in Polish) the usual mama, dada, bubba, tweet, yay, wow, anthony (his cousin) and those 3 words.. "I did it," I had taken video of Joel taking his first steps.. saying so proudly "I did it, I did it" over and over again. (It actually sounded more like "NY NID IT") But once He stopped talking I would watch those videos over and over and over again... Praying for the day that I'd hear that sweet voice. To be honest though, Im jumping ahead quite a bit which I was trying not to do.. between 15-18 months is when I started to notice that something was up. There are 2 instances that stand out in my mind. One was I had taken Joel to a public pool, and we were in the kiddie pool, and there was a 9 month old baby there, and the baby was waiving. Joel was 15 months at the time and I had been trying to teach him to waive for a long time with no success. The other instance was at a family party. My cousin has a child the same age (a month older) and at this party, her child was speaking REALLY well... Joel at this point (17 months) didnt speak at all.. he grunted.. and whined.. that was it. If he needed or wanted something he would come over to me and start grunting/whining (its hard to explain) and I would go through a list in my head of things that he needed or wanted until I figured it out. At Joels 18 month checkup his Dr. was asking me lots of questions..How many words does Joel speak, Does Joel waive, does Joel point, does Joel respond to his name, Does he like playing with other children, Does he make eye contact, Does he follow a point, does he understand what you say... every answer for Joel was "no." At the time I had no clue what an MCHAT was, I was just told that Joel had failed, and his Dr. STRONGLY suggested that I bring him to early intervention for an evaluation. He made it very clear that this should be done as soon as possible. I honestly didnt think anything of it, I had heard of many kids going to early intervention for being a little behind. The word Autism had never come up. During Joels early intervention evaluation they asked me a lot of questions about his behaviour. He liked to bang things repeatedly, he banged his head (ALOT), he would bang at his ears (I cant tell you how many times I had brought him to the Dr. thinking he had an ear infection and he didnt) He would get soooo tense.. like his whole body (kinda like flexing muscles, but his whole body, even his face) he flapped his arms, shaking his head side to side violently, not getting dizzy, he would hyper focus on things.. specifically specs on the rug.. and bottle caps.. he LOVED bottle caps. If I needed him to sit still for a few minutes (or even an hour) I would hand him an empty water bottle and he'd sit there and put the cap on and off, on and off. He liked things that spun. He loved running from one end of the house to the other, crashing into the door. At his evaluation the kept referring to him as a "sensory boy" I had no clue what this meant. Joel scored VERY high on his eval.. (which actually wasnt a good thing) It qualified him for services. We met Liz first, who would be his service coordinater. She was and is an Angel sent from heaven. I have no idea what I would have gotten through the past year if not for her. We started EI with her (a developmental specialist) and speech once a week. We were on a waiting list for OT (occupational therapy) Services were added as needed over the next few months. We have been with early intervention for 6 months now, and are maxed out on 10 hours of services. Joel recieves speech therapy, occupational therapy, music therapy, floor time twice a week, developmental specialist, hippo therapy (on horses) and is in 2 play groups. (one centered around food, the other music) Joel LOVES his therapies, and all his therapists. He has responded sooooooo well to everything and is a COMPLETELY different kid then 6 months ago. He had basically no words, no language comprehension, didnt point, waive, respond to his name... nothing.. he does ALLLLLLLLLLLLL of these things now!! This boy amazes me every single day!!! Ok, I got ahead of myself again.. sorry. Liz had suggested after about 3 months of working with Joel that I have him tested for autism. To be completely honest, the thought had been in the back of my head for months... I could just never bring myself to say that word.. "AUTISM" I referred to it as the A word. As if that somehow made it not real or something. I had to fight with Joels insurance to get him the evaluation. We were on a waiting list for about 10 weeks, and once our name had come up his insurance wouldnt approve the hospitals prior authorizaion form. The form was faxed 8 times to 8 different people, but somehow kept "disappearing." I would call Boston Childrens hospital every day to get an update, then I would call Joels insurance. It was a nightmare, and they never replied to the form. It got to the point where I told Childrens to move forward with the evaluation and if his insurance denied it, I would pay out of pocket. ($2,500) Joel FINALLY got his appointment for an evaluation at childrens hospital on 7/23/13. I was a nervous wreck.. I knew in the back of my mind that he was autistic.. I was terrified of having my worst fears confirmed, but at the same time, I wanted the diagnosis, so he would qualify for more services which would only help him. All the research I had done (hours and hours online) all said the more therapy you get, and the earlier you get it, the better off the child will be. I even read that with really intensive therapy, a childs brain could almost be re-wired to work normally.. this was my new mission. To get Joel as many hours of services possible, to re wire his brain to work "NORMAL" Joels eval went great. I was actually kind of nervous because it went so well, I was scared that they didnt see what they needed to see to diagnosis him. (I had actually taken lots of video of him banging his head, shaking his head violently while rolling his eyes in the back of his head, ect) they assured me that it was okay that they didnt see everything, that the videos helped a lot, and they'd get back to me in a week with their findings. That week sucked... I was a nervous wreck. Maybe hes not, maybe he is, if he is, what does this mean, what will his future hold? UGH. torture. My only savior through this time was My babies. Thank god for them. on 8/1/13 I went in to hear the results.. I already knew what was going to be said, but it still sucked hearing it.. "your son has Autism spectrum disorder, developmental co ordination disorder and obesity" OBESITY?!?!?!?!?!?!?!?!?!?!? I laughed. All morning I thought I was going to loose it when I heard the diagnosis.. but here I am laughing.. how can a 2 yr old be obese? ya hes a big boy.. hes 3ft tall, 37 lbs.. but obese? Oi VEY! She said its just the medical term becuase hes off the charts for height and weight for a 2 yr old. So back to reality.. I wasnt expecting the developmental co ordination disorder.. but its basically him being VERY clumsy.. (which he is) hes constantly falling over his feet, not catching himself.. his therapist say he doesnt know where his body is in space.. now to the "A" word... My worst fear confirmed.. I dont know how I didnt cry..I was numb. My baby.. my precious boy who I fought so hard for.. went through hell with fertility treatments, needles and surgeries.. to get him here.. has autism. What will his future be, what will my future be. Will he go to a reg. school, will he play sports, will he have a girlfriend, wife, kids, UGHHHHHH..... All I want is for him to be happy and "NORMAL" (god i hate that word) The 2 weeks following the diagnosis were hard.. I felt alone. His fathers response was "I must have autism too, because I was a loner too" my mothers response was "They over diagnosis everything now." I had my sister, but she has her own health problems (Traumatic brain injury) and was just in no position to be a support for me.. Thank god for his EI angels. They were my support through this. It took me about 2 weeks to snap out of it.. here I am depressed over a bunch of "what if's".. and I have this AMAZINGLY SWEET AND BEAUTIFUL BOY IN FRONT OF ME.. whos PERFECT. Just the way he is. This kid is AMAZING. He has such a great personality.. If I had to pick one thing I love the most, its his sweetness... he is such a gentle, kind soul. I pray to God that he never loses that. He's happy, he's healthy, he's soooooooooooooooooooooooo smart. He is a genius when it comes to puzzles.. I mean hes just amazing! He knows every shape from circles, squares, to octagons and pentagons!!  I finally realized that me being depressed was doing no one any good.. I actually saw it affecting him.  and everything became clear in that moment... He is going to feed off me, how I go about this whole thing will be how he perceives it. I decided in that moment that Autism will NOT define my son. It will be a part of who he is, not who he is. I will teach him that its what makes him special and unique.  I don't ever want him to feel different. I want him to embrace every little quirk that comes out of that beautiful soul.  Everything that I do, and every thing that I feel effects him.  I am his number one fan and his biggest cheer leader.  I will be there right beside him through every obstacle big and small.  To celebrate in his victories and encourage him to do better when he fails.  I know we have a long road ahead of us but This is where we are right now... welcome to our Journey! :o)


 below are just a few photos.. (Im a photographer so I literally have thousands of pics of my babies! lol) but, heres a few of my lil man! some of me with him, and one of 2 of him and his sister.. its all coded, so I cant organize them, so their in no particular order, but heres a snapshot of the past 2 years!






  


My BIG boy!! 9.9 lbs!! (gave birth all natural too!!)