I should have never said that...

The past week as hard as it has been on me, Joel had actually done fairly well..  He had a few days with slight hiccups so t speak.. But I had said to a few of his therapists and even brought it up at his team meeting that a lot of his sensory behaviors have recessed.. specifically the head banging (which drives me crazy)  I think I even mentioned it in my previous post.. that he hadn't banged his head for a few months.  Well, that streak has now been broken.   He started again yesterday..  After his ABA was over, I knew he was tired.. (because we all had another rough night due to Angie having a stuffy nose.. she was pretty much crying half the night because she couldn't breath... I tried everything.. Vick's, steam, lifting her up at an angle...ugh, it was awful...)  So after Joel's therapy was over I attempted to put him and Angie down for a nap.. (at like noon which is REALLY early for him to even consider taking a nap.. BUT, he was up a lot of the night because of Angie's crying.. and he was acting tired and cranky so I knew he needed one)  Angie went down.. (and slept for almost 3 hours.. which is so unlike her.. shes my 20min nap queen...)  Joel on the other hand refused to go down.. so I gave up.. and let him play with his car... he stood up, went over to the bed.. and started slamming his head into it...its gotten much more violent now that hes older..my heart sank in my chest.. I'm always torn on whether to step in or let him get it out of his system.. I've been told by his therapist as long as he safe to let him do it, others have said to re-direct him if possible.. so I let him do it a few times before trying to re-direct...I managed to pull him out of it by starting to sing and do the hokey pokey (one of his favs) but it was only a temporary fix...  and ever since he did it yesterday, hes been doing it ever since... ugh.. I hate the head banging more than anything...He started it again this morning.. and I packed the kids up and took them to the park.. (even though it was freezing)  we bundled up and braved the cold.. he needed to get out.. and run.. when all else fails (in my attempts to help regulate him) going outside and to the park usually help.. and in today's case it did.. for a little while.  He didn't want to leave the park and had to be carried back to the car.  The rest of the day went OK.. not great, not horrible.. then Tonight he was bent over with his legs spread a bit, and put his head on the floor.. (kinda like a head stand) and started slamming his head into the hardwood floor from that position.. over and over and over again.. obviously its not safe, so I kept intervening.. giving him joint compressions, squishes.. singing... everything I could think of... He just couldn't snap out of it.  I got him on his trampoline.. and he jumped for quite a bit.. and was shaking his head violently side to side... His hair has gotten a little long, my sisters husband was over and he was like "hes just trying to move his hair"  .. I wish that were the case... After the nights events I know he was seeking the vestibular stimulation..  My parents got back from Poland tonight.. I'm really hoping that my mom will watch Angie tomorrow so I can go spend the day with Joel.   We got some free passes to an amusement park over the summer when I wrote them to thank them for their policy regarding children with Autism.   We had the best time at canobie lake park when I brought Joel in late July.  If your child has a disability.. (including autism) they give you a bracelet, and let you go on rides trough the exit and avoid waiting in lines.   You do till have to wait for a little while.. (which was really tough for Joel)  But not anything like waiting in the full line. It also allows him to stay on a ride twice without getting off as well.  Joel had the best time there.  He LOVED the rides, and although he did struggle a bit with wait times. (even if only a few minutes) it didn't put a damper on our day.   Anyway, when we got home I wrote them and simply thanked them.  Let them know about Joel and that he had the most amazing day there.  The rides were awesome for a lot of his sensory issues..  They wrote back, sent 4 free passes, and Joel a free t-shirt!!   We've been back once since, but we still have 2 free passes, and they close at the end of the month, so this is really our last weekend to go.. PLUS, I think with past behaviours emerging again.. its a good time for this break.  I haven't had a mama and Joel day in a while.. we're due.   I need to enjoy him, and make sure he has a "normal" child hood when hes not in therapy.   Finding a balance between everything is so hard and I'm still learning.  Sometimes after our week of therapy is over, I feel like I should just give him a break and let him do what he wants.. But that doesn't usually last long, because he needs structure, he needs constant direction of what to do next, and he needs stimulation and input throughout the day.. there are no lazy Sundays so to speak in this house.  So to end this post I wanted to share our awesome moment of the week.. Hopefully I can make it a trend for end of the week posts..  I feel like Ive been such a Debby downer lately and I want to bring some positivity on here.. SOOO, Thursday my down did its annual down town trick or treating.  They close the streets down, and basically the whole town goes downtown w. their kids all dressed up and trick or treats at the stores!  I like it even more then reg. Halloween.  Its awesome seeing all the kids dressed up, and I loved showing mine off!!  They looked BEYOND cute!!  I had a boutique make them raggedy Anne and Andy costumes!!!  This is the first Halloween that Joel can kinda grasp the concept!  I put them both in a big red wagon and pulled them downtown!  It was so much fun, Joel attempted to say "trick or treat" a few times!   but he was SO happy to get a bag full of POPS!!!!  the boy loves his pops..  one bowl of candy had everything.. chocolate, gummies, sweet tarts, reeces... and Joel looked in.. and what did he pull out???  a single life savers mint!!! LOL.. I'm like a mint?!?!  i need to practice with him on what to grab, lol, mama needs some reeces!  ;P Here's my raggedy Anne and Andy!!!  They pulled it off beautifully!!!

 

Here's a few pics from our park trip today! 

This is how I get through a store.. as you can see threes never much room in the cart for much.. they need to make double wide store carriages with 2 spots to seat kids.. they have them at bjs.. they need them in every store.. its so hard for me to take them both to a store!! 

 

The rest are Just a few randoms.. some from this weeks boutique modeling.. (the penguin hat) and the abominable snowman and Rudolph hats are on this weeks schedule to be shot for the boutique modeling!  I had to throw one of Angie in.. shes been getting brave and letting to when she stands up!!! I'm in SOOOOOO much trouble once she starts running around here.. ::sigh:: I'm exhausted just thinking about it!

 

 

 

YAWNNNNNNNNNN!!!!!

So its been a bit since I've posted.. the past few weeks have been EXHAUSTING!  My daughter is teething, so she hasn't been sleeping well.   Which makes for some rough days when I'm running on 3 hours of sleep.. (all broken up)  I've made the mistake a few times in the past week of giving into Joel's desire to have his 4pm nap.. I know better than to do this.. but honestly, I needed the nap.. so if all the planets aligned, and I could get both Joel and Angie down at the same time, I passed out with them a few times.  Which sounds all fine and dandy until I wake up at 6:30pm, and their both still snoozing.. Then I'm faced with the dilemma of waking them up, which i know will mean 2 cranky kids.. or letting them nap.. hoping they just sleep till morning! (wishful thinking i know)  I'm obviously delusional and sleep deprived for even thinking that could happen.  Ive tried both strategies and neither works.. I wake them up and then have to cook dinner.. and I don't like them in the kitchen while I cook, so its gated off.. so they both sit and whine at the gate.. then neither wants to eat... and the best part is.. their both up till midnight.  and fight going to sleep.   We have a pretty consistent bed time routine, but on days where the 4pm nap sneaks in.. it always makes for a rough start to the night. tonight was one of those nights... I just desperately needed the nap...

 So Joel had his first team meeting today with his buildingblocks (aba) team, and his minuteman team (ei)   It went well.  He was to funny seeing everyone in the same room, he thought it was a party!  I love that he loves them all so much and get so happy to see them!  We added a new goal, to work on him recognizing emotions.   He knows what they are, but if I cry, or am mad, he doesn't pick up on it at all.  He actually laughs if  I cry. Liz (his main EI therapist)  and I set a date to start Joel in his own bed, in his own room. (He currently sleeps in my bed with me)  I attempted this a few months ago and it was a nightmare.  I stuck it out for 2 weeks and rather than him sleeping longer, he went from waking up twice a night, to waking up every 20 minutes by the time we ended it.  Hes now sleeping through the night (when Angie doesn't wake him up) and he also understands a lot more now... so I'm hoping it will go better this time.  I also made him a social story on the IPAD with our night time routine and pictures of us in our nighttime routine, ending with him going to bed in his big boy bed.  He loves the book!  we read it every night.  and have set the date for November 4th for Joel to start sleeping in his big boy bed.  I'm praying it goes better than last time... I think I'm probably the issue on this one.. hes been sleeping with me since he was born.  He was a terrible sleeper...(like up every hour till he was 6 months old, then every 2 hours till he was 18m, then by 2, it was only twice a night he would wake up... I always told his father he would get out of the bed when he slept through the night.. he just never did, so he was always in the bed.  And now Ive gotten so used to snuggling with him all night.. that its going to be hard for ME to sleep alone.. As I'm sure it will be hard for him as well.  Big mommy fail on my part.  I know he needs to be in his own bed.. I just gotta buckle down and get it done.  Back to his team meeting..everyone agreed that hes doing really great.  He does have his ups and downs, and literally no day is like the last.  I've come to just accept that hes going to pretty much run the show.  I play off him and what he needs. His sensory issues are still there but I feel like were on a good streak right now... theres no head banging, not to much head shaking.. and although he does need to take a lot of sensory breaks, he seems aware that he needs them, does them, then comes back and is good to go.  I know it sounds ridiculous, but when he gets on his good streaks, I feel like maybe the Dr's were wrong.. Maybe he doesn't have autism.   But then reality always comes to smack me down and we either have a bad day, or bad couple days... I hate those days... I dread them.  I'm still learning how to read him, and sometimes I can catch an episode before it happens..  Sometimes it just comes out of the clear blue, and usually I can pull him out of it..  There have been times that I cant.  I call him my "crazy man" when these episodes occur..  I dont know how else to describe it.. he just goes crazy.. This week in particular has already been a struggle for me.. I'm exhausted which I know doesn't help.. Joel and Angie have been been super whiny..and clingy..  I thought that maybe they were getting sick, they both had runny noses.. but that was the extent of it.  Or maybe teething.  On top of that, my parents went to Poland.  (my mothers family is from there, her mother (my grandmother) was taken by Nazis in ww2 to go work in concentration camps and she never saw her family again... My mother is going to meet her aunt (my grandmothers sister)  and her cousins.    My grandmother has been dead for 25 years, so its going to be amazing for my mother to meet her family!!)      But my dad usually helps out with Angie while I take Joel to all his therapy.. But obviously that's not an option this week.   He also comes to take the trash out, or is just there if I need help with anything.   I hate feeling alone.  Being home with these kids all day by myself, changing their diapers, feeding, playing, bathing, potty training, cooking... and god knows i suck at it.. but when i find the time, i do try to pick up the house.  Its all me.. threes no one here keep the kids entertained while I cook, or while I shower.   God do I miss showering!  what a luxury..  the kids cant be trusted in a room without supervision.. generally Joel doesn't nap, when he does, I usually go down with him, or try to get something done... at night time when their both sleeping, if i try to take a quick shower, I feel like their both crying the whole time and shut the water off 10x thinking i hear crying.  There is no me time.. I have to leave the bathroom door open when I go to the bathroom.. for a few reasons.. Joel freaks if I close it.. but I also cant leave them un attended.... so they both wind up in my tiny bathroom with me.. I don't get a break... When I envisioned my life.. with children.. this is so not how i saw it. this wasn't how it was supposed to be... I wasn't supposed to do it all alone..   Yes, their father helps financially..  that's the extent of it.   I try not to think about it.. I just do what needs to be done everyday and keep putting one foot in front of the other.   I'm really missing my parents this week though.. Having them gone has made me realize how  much they help me, and how much I rely on them.   I really need to stop having these pity parties for myself... don't want this blog to be depressing..  not that any ones reading it anyway.. at this point its more of a journal for me to just vent.. because I'm lacking somewhere to vent in my everyday life....   vent over.   :o)   on that cue Angie just woke up!  shes 20 minutes late tonight...shes usually up at 12, 2, 4, and up up at 6...  she made it to 220 tonight!  lets hope its a new trend.  OK, goodnight!

Roller coaster..

So the past few days have been rough.. Joel's getting his 2 yr molars and hes making it known hes not happy.  My daughter is also cutting her first tooth.  The past few weeks have been great for Joel as far as his sensory issues.. he pretty much stopped banging his head (which hes been doing since he was able to)  and was seeming pretty regulated with his normal motor breaks, however  the past few days have just been rough.  I'm not sure if its teething related, or maybe the additional of therapy, but I've found myself very close to tears a few times.  I think hes replaced his head banging with spinning.  He's been spinning ALOT.  He's also been shaking his head, but just very quickly then he stops, but he does it many times an hour.. throughout the day.  There have been days where he's been so quite and timid, which is SOOOOOO unlike him, then today he was the complete opposite, bouncing off the walls, screeching all day.  He's been sooo sensitive lately, God forbid I tell him no, you'd think that something awful was happening to him with the meltdowns hes been having.  Some of this can be attributed to him being 2, and him also getting his 2yr molars.  I have so many tools that have been taught to me to use when all this stuff is going on, but I hate when I try EVERYTHING and it makes no difference.  I feel like a failure.   This week I haven't been as patient as I usually am.  I'm overwhelmed.  Taking care of 2 babies all day every day by myself.  Running Joel around to and from therapy all day, by myself.  Trying to find time to do laundry, dishes, clean up the never ending mess that is my house, cooking, feeding, diapers, bathing... my days are redundant.  I'm so greatful that I have my family to help when they can, (with some house stuff, and my mom will take a kid over night here and there to give me a break)   But as far as the autism related stuff, I am completely alone in this and I feel it.  Especially on days like today, when I could really use someone to vent.  I'm just not up for the never ending debate with my family that my sons not autistic.  I'm definetly on a roller coaster ride, majority of it is up.. but when it goes down it flat out sucks.  Tomorrow is My towns fall festival, so hopefully it will be a good day!  Im looking forward to Joel getting his face painted, painting pumpkins, seeing the animals and just having a good time.  We need it!  :o)