This morning J and I went to the YMCA so that I could get a little workout in and he could play in the daycare area. He loves it there, especially the big ball pit! So we got there and as soon as we walked into the childcare room, his little eyes lit up and he walked straight to the little entrance door to get to the play area. He walked in and turned around to tell me "I love you" in his own little gibberish that I've come to understand. I said "I love you too baby!" and he turned around to go in. But by the time he turned around, 4 cute toddlers walked up to greet him. Only they didn't know or understand that it scares J. He does not like too many little kids around him at once. He'd much rather observe them first, and then decide if he wants to come closer. So of course his first reaction was to scream at them. I said "It's okay baby, they just want to play." Then he looked for a second and then decided that he wanted out and he ran to my leg. I picked him up and said "Momma will walk you in, ok?" I carried him in and just as I was putting him down he said "Than du!"
As frustrating as it can be parenting a child who has any sort of issues or delays, it's little moments like those that remind you that they need you to help them in this confusing world they live in.
So, as many of you know, we've been waiting on an Occupational Therapist for J for about a month now. The nurse at his Drs office called the CDC and they let her know that it would be AT LEAST 6 months before he could be assigned an OT through them, so that wouldn't work. She then sent the referral to the Early Intervention center we are alreayd using for his speech therapy. I waited a week and then started calling them to see if I can get any idea of how long we will have to wait for the OT. I ended up leaving 3 different messages that were not returned and no one who answered the calls could answer my questions. It was ridiculous. So yesterday I called and complained. I also told his speech therapist, when she came for his session, that I could not get any calls returned and it was very frustrating. So I wasn't surprised when my calls were finally returned later yesterday evening. I told the coordinator that I was calling to see what the status was on J and his OT. She told me:
"We are low on funds and that's why he hasn't been assigned an OT yet. We can only assign OTs when they are truly needed."
What the?? First of all, we were prepared to pay for Early Intervention for our son, we were surprised when we found out that it is funded until he is 3 yrs old. Funding should not be a reason why my son cannot get an OT. What really upset me though was the comment that OTs are only assigned where truly needed. Well how do you decide when an OT is truly needed? The coordinator does not witness his sensory behaviors so she wouldn't know. She then asked me why was his Dr referring him for an OT. I told her "J has some sensory issues that are affecting his progress in speech therapy. The speech therapist agrees that his sensory issues need to be addressed in order for him to get more out of his sessions with her." With that she said, "Ok we will get him set up with an OT."
I really don't expect to hear anything from them anytime soon, but you better believe that they will get a call from me weekly and I will ask his SLP every Monday if she's heard anything. Such a frustrating system to have to deal with!
A few days ago, we took J to the park where he met a little boy a little older than he is. They played monster together, roaring and running from each other. At one point J ran one way and the other little boy wanted him to go another way so he yelled to J...
"Little Bill!! C'mon Little Bill!!!"
The mom was so embarrassed, but I really thought it was hilarious! Totally innocent! It's crazy b/c my cousin always tell me that J looks like Little Bill whenever he gets his hair cut low. Hmmm...they both have a round head and ears that stick out! LOL! Now everytime I see Little Bill on television, I laugh.
What does that spell??? Why, rock of course!! J is now identifying his alphabet!
I had on a Tshirt this morning that says AIRFORCE and underneath it "Little Rock AFB". I went to get J from his crib and he immediately stood up and started pointing to the letters on my shirt and he said "R....K....O....C!" I'm so proud of him!!
There have been far too many nights that I've gone to bed feeling like J and I didn't get to spend enough time together. Being a 2 yr old with sensory issues, he almost has NO attention span, does not want to share, does not want me to help him with anything, and melts down at the drop of a dime. Only his melt downs include a blood curdling scream (not exaggerating), slapping himself in the face, and banging his head on the wall. Being an overwhelmed, frustrated mother, I decide that it's easier to just let him play alone than to deal with the wrath that results when playing with him. But that didn't work for him. I want to interact with him. I feel like he's at the age where he needs to get prepared for the learning envirnoment. I can't keep waiting on the EI system to help b/c they take the hurry up and wait approach. We are going on 2 months of waiting for an OT which he so desperately needs right now. And lets not forget about the feeding therapy he needs but EI doesn't seem to agree. I will keep fighting for him until he gets the help he needs. And in the mean time, I will do what I need to do to help him...and myself.
My main goal is to drastically decrease his TV time. I still let him watch Dora and Yo Gabba Gabba after breakfast, but then the TV goes off and Disney Radio comes on. This week, I started doing small learning sessions with him. The only thing this "session" requires him to do is stay seated. I do several different activities with him, and while I don't expect him to participate, I expect him to stay seated (or in his case, at least have one foot on the chair!lol). So we pull out a fold away activity table my mom got him for his birthday. This table only comes out for "school" or activities, so he loves to sit at it, as oppsoed to his Elmo table set that stays out at all times. He immediately sits at his table and waits for his activity. We start with arts and crafts. Today I traced his hands onto construction paper and let him color them in. Next, I pulled an activity sheet from his preschool activity book I purchased from Target and showed him how to make curved lines. I traced over the curved line examples and I didn't expect him to be able to do it, but I wanted him to watch me do it. Well, he made 3 curvy lines!! WAY TO GO BUDDY! So after that activity, I gave him a coloring sheet to color on while I pulled out his animal picture book. I found that he needs to have another option available to him just in case he is not interested in what I am doing. So in this case if he didn't want to see the animal pictures, then he could just color...no tantrums involved! So I went through the pages and named the animals and made the animal sounds. For the most part, he colored, but he did pause for his two favorite animals, a dog that says "woo woo" and a lion that says "Woooaarr!!" lol. Good enough for me! Next I do his ABC flash cards. For some reason, everytime I pull these out, he hides his face behing his construction paper. Every time! And peeks out every now and then with a big smile! After ABC flash cards, I sing the ABC song. I know eventually he will sing along. After the ABC song I read a story for the day and he always pays attention to that part. And then his learning session is over. 15 minutes tops and he has been well behaved so far. But please don't let this post mielead you into believing he sits still at the table the entire 15, b/c he doesn't. Several times I have to tell him, "Don't rock in the chair baby, you may fall" "Sit down for momma." "Sit down on your butt, J." "Don't throw your papers on the floor." "You threw them now you have to pick them up." "No screaming, use your inside voice please." He enjoys the interaction, so he does listen well for the most part, but he has fallen out of his chair a few times. Also, if he isn't standing on his chair, lying across the table, or playing peek a boo under the table (all while I'm still reading to him!!) he is just scowling at me! It is hilarious to look over a book and see that cute scowl! But I promise I don't laugh. I keep reading! After the lesson we yell "SCHOOL!!", J throws both hands in the air and says "Cool!!" I wish I could take the credit for teaching him to say it so enthusiatically, but anyone can tell by the way he looks at the TV when he yells it, that he learned it from WORD WORLD!! Then he helps me to put his table away and we play Ring around the rosey. He needs this after sitting still (or trying to) for the past 15 minutes! He loves it!
Then I have lunch with him and we go for a walk, WITHOUT THE STROLLER! Today we walked around 2 cul de sacs. J's face was lit up. He would run in front of me and then stop and I'd say "Jump, Jump, Jump. Jump" to the beat of one of his favorite Choo Choo Soul songs and he'd start jumping and saying "jump"! Then as we walk we passed some house with dogs and whenever the dogs barked he would yell "DOG" and stop in front of the house and bark back! Then whenever he sees a big truck, first he yells "CAR!" I say "Very good J, but that's a truck!" Then he says "Choo Choo!!" He can't pronounce train yet, so he calls his trains truck. Considering I have yet to meet a 2 yr old who can say truck without sounding like a sailor, I think I will accept that for now! We got home and J was ready for his nap.
Right now, I don't expect a huge response from him right away with the sessions we have, and I also expect him to get frustrated and not want to cooperate on some days. But I know that with consistency, he will learn. And that brings me to my attention whore news I want to share...My baby finally figured out his shape sorter block!! He has never had the patience to get the right shape into the right hole. He would just grab any shape and try to pry it into any shaped hole and when it wouldn't fit, all of the shapes and the sorter block would go flying and he'd have a huge fit. Last night he came up to me with the block asking me to empty the shapes from it. I pulled the shapes out and he sat beside me and intently looked at the shape in his hand and then looked at the block to find the right shape. He turned the block until he found the correct shape and pushed it in. The look of achievement on his face melted my heart. I made the biggest deal out of it! He then went on to put in two more shapes. He only has the patience to do 3 -4 shapes at a time, but no matter what shape he has in his hand, he can match it to the shape on the block...even the star! I am so proud of him!
I do hope that this post helps anyone who is surfing the net for activities to try with sensory kids. I borrowed a book from the library full of activities to do with toddlers. I immediately turned to the page with activities for 18-24 months old and there were none that are appropriate for J. The activities required the child to have some sort of attention span, coordination, and the ability to talk. It's too much for J. So I brainstormed and came up activities for him using sensory toys and exercises. I will be posting here with the ideas and techniques I use for J and how they help him.
I had so many plans for the blog during the first week of 2009...as you can see, it didn't happen. I've been completely overwhelmed with work, family, and life in general. Everything seemed to happen at once. My husband's retirement was denied and now he keeps getting different answers from different sources. So many people in higher places are telling him that he CAN retire if he wants to, yet he still holds the paperwork stating that he has to be in Springfield, IL by April 30. So that causes us to be in a frenzy to get this house on the market. Stress. Then J's behavior and eating habits have been getting worse and more frustrating instead of easier. I thought it would be the other way around once he started therapy, which may explain why I've been extremely frustrated. The EI program here seems to not take J's case seriously. They call him a picky eater. Here is a little bit of what we go through EVERY.SINGLE.DAY. (unless it's nuggets and fries)...actually, I just watched it over again before deciding whether or not to post it here and I decided not to b/c it is too disturbing. Let's just say mealtime is torture to him and he gets so upset that he slaps himself and screams in fear. I taped this b/c I know that this is more than picky eating and it seems like the therapists need to SEE this instead of hearing it explained from my mouth. I even went so far as to email the clip to my BFF who is an OT in Atlanta. She saw the video and called me and asked me if she could send the video to her supervisor. Her supervisor immediately called her back and said that he is clearly showing signs of something way more than picky eating and gave her some tips to give me, some things to look out for while he eats, and a contact number for Dr. Kay Toomey. She developed the SOS Approach to feeding and I plan to call her next week just to get some advice. So far, I've been told that I need to get J a new speech therapist, one that is comfotable working with his severe feeding issues. I am not confrontational, so I don't know how I will handle that b/c his current SLP is really sweet, but she isn't helping with his feeding issues and I think she thinks I'm just being a paranoid first time mom about all of this.
And with all of that going on, I've fallen so far behind on my workload. I have 3 sessions pending editing and an order that needs to be processed...a huge order! At one point, I wanted to just shut down my business for 2009 and focus on J and the move, but then I think about how photography takes me away from the stress of everyday life, even if just for 90 minutes. And working on the pictures and having satisfied customers definitely brightens my day. So I think I will continue to shoot until we have a definite date to move. I need it. It's my sanity. Now to try and get organized and get these sessions proofed and sent to my wonderful clients who are all so understanding! Thank you all and I promise to be back to blogging once things calm down here ;)
1. Retirement...it was denied. I believe I am in shock, b/c I have not shed a single tear and that in itself is helping my husband to stay strong. The reason for denial is because he was officially served orders on Dec 29, and even though he wasn't at work when the orders went out, he's still served. 2. He's very upset and called to ask for a re evaluation of his present situation. We have to send in paperwork from J's pediatrician stating that he is special needs and is being seen by a developmental pediatrician here. 3. We both have come to terms with the fact that we pray to God, not to give us what we want, but to do what He knows is good for us. Maybe I should start looking for real estate in IL instead? 4.Had my first official session of 2009 this morning and made the first deposit into our IVF savings account. The plan is to place all of my session fees in there and we (along with my parents) will add funds to the account whenever we have the extra cash to spare. Hopefully soon, our dream of adding to the family will come true. 5. Working towards putting the house on the market by March...However, if we have to go to IL, we have orders to be there by April 30, so we would need to list the house like YESTERDAY! 6. It's not ready to go on the market yet though...we still need the garage door repaired and we want to get ceramic counter tops in the kitchen b/c several homes in this neighborhood offer them. We also want to get the yard professionally landscaped and that won't happen until late Feb, early March. 7. Today has been a good day for Jayden and I so far...I've been much more patient. Let's just say it involves lots of sarcasm on my part. Like when a block comes flying at my face b/c it wouldn't stack how he wanted it to, I reply "Oh sweetie, are you having a hard time stacking blocks?" 8. Is it bad that it now takes sarcasm for me to be patient? The above reply is what should be said b/c he gets angry out of frustration, but I'm frustrated as well. So if it takes sarcasm, then sarcasm it is. 9. My husband gave me a Nintendo DS for Christmas and it's slowly becoming my new addiction...how sad is that?? 10. I promise I will get back to adding pictures to this blog soon!!!!
SI is a very difficult thing to deal with at times. We went to Atlanta this weekend to visit my BFF and her new baby. The trip was very unpleasant and J was out of control (not exaggerating one bit) from the moment we got to Atlanta until we got in the truck to head home. He was non stop and very unruly. So out of sorts that I just knew something had to be bothering him and causing a sensory overload. Sure enough, today he's had diarrhea, fever, and congestion. I'm taking care of that, but it just gets so overwhelming at times. Everyone keeps telling me that I have so much patience with him. Even his speech therapist told me so this morning (right after he got angry and stood up and hit her several times over a puzzle) that I have lots of patience with him. I don't feel like I do though. I yell at him at times, and sometimes when he just won't stop, I feel like I grab his arm a little too rough and I immediately feel guilty. He can't help what he does. I know he can't. But I still get frustrated and angry with him. I don't think that qualifies me for the Mother of the Year award now does it? I try so hard to be understanding, but at times I just feel like I need a break. I deal with the behavior 24/7 and then I go to bed questioning myself and wondering what I could have done better. Then the next morning I get up and try something new with him and he gets frustrated and I feel like a failure once again. This morning I tried helping him to play with his learning laptop and he didn't want me to help so he slapped me, snatched the laptop, and when I took it back and told him I wanted to help he slapped himself in the face and threw himself to the floor. I yelled at him... It's so hard...24/7.
Thank you for visiting our blog! We are happy to share a little bit of our lives with you. After years of battling infertility, we adopted our son, Jayden, at birth and 5 years later I gave birth to our newest addition, Elias. God is so good!!
This blog is a mixture of personal thoughts, daily battles and triumphs with Jayden's health, and about our experiences as a family of 4. So sit back and enjoy our crazy life!