Please Join Team Elias!!

Image

Boogie and Eli

Ok so here I am….. yet again I have fallen off the blog writing wagon. That’s it!! No more promises about writing everyday, every week, every year…. Of course I have all the good intentions of writing everyday, but darn it!! Life keeps getting in the way!!! ūüėČ

We are now in July and summer is in full swing here in our house. Mommy is thrilled because it’s sweltering hot outside and she can go to the beach. Daddy is complaining about the heat.The kiddies are both out of school and keeping busy. Boogie at day camp all summer long. She comes home chattering about all her daily adventures. Looking tanned and healthy from the clean mountain air, not to mention the nonstop activities, I am so thrilled that she is¬†so happy!

Eli had two weeks off from school until Extended School Year (ESY) starts for 6 weeks then another three weeks off until school starts again in the fall. In the meantime, we have been very lucky that a teacher off for the summer has been watching him for half the day, taking him to the park, bookstore, working on his school activity books so as to avoid any summer regression. Most importantly Eli won’t think that his program workbook¬†has permanently¬†disappeared and won’t be caught by surprise when he sees it again at school!! His babysitter is great and I am so grateful to have her. She has a lot of¬†experience with children with special needs so Eli’s occasional meltdowns don’t faze her.

On the speech front, Eli seems to be progressing beautifully!! More consonant sounds are emerging along with words. Placing consonants correctly at the beginning of words are difficult for him, but he doesn’t seem to have the same issue with consonant word endings. For instance, you can clearly hear Eli say ‘wait’ and ‘eat.’ However, much to my dismay, the word ‘bye’ often comes out as ‘die.’ No matter how many times we say ‘Eli say buh’ and he repeats it correctly; then when we tell quickly to say ‘bye’… Well ‘die’ comes out…. Pretty funny when you get puzzled looks from the cashier at a store¬†as the adorable four-year¬†old says ‘Die!!’ with a big smile on his face as he walks away! I have been told that this is quite typical with children dealing with apraxia. All kidding aside, I owe a lot to the unwavering dedication from his school and private speech therapists. He still has three 30 minute school speech therapy sessions weekly plus¬†two¬†30 minute private sessions at home.¬†I am pretty sure these two ladies have wanted to¬†leave the room screaming while pulling their hair out due to Eli’s¬†stubborn nature, but they never did. Their dedication has shown great results¬†and now¬†Eli (for the most part) cooperates and dare I say, even enjoys speech therapy.

Fine motor skills, well, still are a¬†royal pain in the ass. I still stand firm when I say that I truly think that Eli’s non-compliance in this area is due to his¬†frustration in dealing with activities that¬†he¬†finds difficulty. The school thinks that¬†it’s Eli’s¬†stubborn nature. Maybe¬†it’s a little of both? Anyway a Functional Behavioral Assessment (FBA) was written¬†by the school behaviorist. According to wrightslaw.com an FBA¬†is the process of determining the cause (or “function”) of behavior before developing an intervention. The intervention must be based on the hypothesized cause (function) of behavior.¬†In our case this was a pretty long process where the behaviorist observed Eli’s behavior in¬†different¬†settings with various teachers/therapists.¬† This FBA has helped in the long run because it developed concrete strategies in dealing with the behaviors and, in essence, put everyone on the same page.¬†Since the document was drawn up Eli has gone on to willingly join (and sing!!) in circle time, pick up a crayon independently and draw lines, and work on his program book (with assistance) for longer periods of time. For Eli, these gains are huge. He even got an award at the end of the year for improvement in scholastic areas ūüôā

Also new for Eli, is that he will be getting a district appointed aide, that will help in combatting or preventing his other remaining issues, namely escaping/avoidance. If Eli can manage it, he will literally try to run away from whatever task is being placed on him. The time being spent on trying to get Eli back on task takes time away from his learning. So it is our hope that this aide will beat him to escape by literally blocking flight. If he turns and tries to run or avoid, she will be right behind him ready to turn him back around and get to work. God bless her! I have spoken to her and she says she is ready for the challenge! Oh boy…. Hopefully we can break him of his bad habits to get him over the behavioral hump and learning….

As far as Mommy is concerned, I am getting ready to start the summer semester at college. After all my credits were transferred and the classes that I have to take over the next few months, it looks like I may be on the course to graduate with my associates in human services by spring next year.. Yay! So excited! AND so thankful for Hubby and his support… I wouldn’t be able to even contemplate this goal if it weren’t for him taking over with the kids in order for me to take night classes.

On another note, Team Elias will be participating in the CASANA¬†Apraxia 5K Walk/Run for the second year now.¬†Despite my weight gain, I am determined to run it… (Eeeeek!!) If anyone would like to participate in the walk or donate for apraxia awareness please go our team page at : https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1014964&supId=339402837

All in all, it has been a great few months for us thank God. ūüôā

Advertisements

Link

Road blocks and fog

Broken resolutions already unfortunately… I wanted to write in my blog everyday, but it’s been too crazy lately with school, work, home, kids, etc etc etc … I really have to try to get back into the swing of things though because writing, I have found, is therapeutic for me.

So Eli just started his third week of school and well, it appears that the honeymoon is over. His daily communications home from his teachers aren’t as cheery as the first ones were. Now I can sense some frustration in his teacher’s words as she explains that Eli ‘continues to demonstate difficulty following the classroom routine.’ Here we go again…

This is Eli’s usual procedure when he starts some place new.. He is an angel for the first week and a half; then he proceeds to push buttons until he brings everyone to the brink of exasperation. Then it takes about another month before he will do all that he is supposed to do. Sigh… Yes I know he’s only four… It’s just that sometimes it gets really old. I tell his therapists and teachers to keep up the good work and just ride the storm patiently, but it’s exhausting to be honest having to keep the annoyingly positive attitude with everyone. The pity party isn’t productive; I just wish it could be a little easier.

I dream that words would just come pouring out of his mouth and that he would talk my ear off. I wish that he would eat everything without having to worry if he is chewing it right.

20120130-231214.jpg

I wish Eli would just listen to his teachers so I wouldn’t have to worry about what new complaint I will read in his communication book. I wish he would comply with his speech therapist and just comply with this saint that doesn’t give up.

20120130-231127.jpg

This is just one of the days that I am weary and worry about Eli’s future… There are days that I see the light at the end of the tunnel and there are days where I see nothing but fog and road blocks.

20120130-231647.jpg

Toothettes, Jigglers and Z-Vibes.. Oh My!

Today was day one of the TalkTools seminar that I attended on Long Island, Foundations in Feeding and Speech Clarity, Oral Placement Therapy. Well the day did not start out too well to say the least. First I woke up at 6:50 AM, registration was to start at 7:45 and the seminar started at 8:30 AM. In most other areas of the US, you could have simply hurried and still made it on time at least to the start of the class. WELL those of us that live in the New York Tri-State area would have probably thought that it would have been best to just go back to sleep! So I hurried the most I could and left most of the kid duties up to Hubby.. (sorry hon!)
Even with driving like a maniac, I still arrived an hour late.. I HATE Manhattan traffic!!! How is it possible I hit traffic on EVERY SINGLE imangineable road on my way to Uniondale! Yes it’s my fault for waking up late, but good Lord!

Anyway, I finally make it there and it turns out I wasn’t the latest one, but by the time I sat down one of the few seats left was the seat that usually no one wants: The seat right at the very front, right smack next to the presenter… Then I found out that I was the only person there as just a parent. Everyone else there were speech therapists. Nevertheless, I am so glad that I attended this seminar. I have learned so much about the mechanics of feeding and little things you can do to stimulate sound and proper chewing. When I went into the class I had little to no knowledge on all the different tools that can be utilized to help a child along; like toothettes, jigglers and z-vibes (come on! you know you want to say it! OH MY!).

20120119-235202.jpg

I was talking to our private speech therapist and she thought these could be great tools, but only when Eli allows us to get close enough to his mouth to use them on him. He tends to be very orally defensive and isn’t a big fan of dry foods going into his mouth let alone a big chewy tube! If we could get that defensiveness down then it would be a great technique to try. I want to see if I can pick up a starters kit of some sort to bring home. When I showed the video of Eli devouring down his pasta to the presenter she thought that it was great that he was eating and enjoying food, BUT he still is not chewing properly. He’s still suckling a portion of his food; which also explains why he hates crunchy food. That also ties into his speech issues with apraxia. The tongue movement that he lacks for moving food around his mouth also affects the types of sounds he makes.

Very interesting all in all, but it makes me wish that I had been more proactive years ago when I first realized that he was making no progress with his first speech therapist. I was just so happy that I found someone that didn’t make him cry that I never questioned her as to why she wasn’t using different techniques or why he was making virtually no progress at all in the areas of speech and feeding. She pretty much worked on trying to get him to say the B and M sound for 2 years, but in reality it would never really come until his feeding issues were addressed. It also explains why Eli tolerated her; because she never pushed him beyond his comfort level. Please don’t get me wrong. She was a great therapist, but I don’t think she knew how to handle Eli’s case. Anyway, after going to a different apraxia workshop I learned that is one of the red flags of a child with apraxia. The child will make little to no progress in speech therapy even after several months.
As they say hindsight is 20/20!

Tomorrow is the last day of the seminar where I will learn how to apply these techniques specifically to an apraxic child which was the main reason for my wanting to take this course. That portion will promptly start at 8:30 so I will now go to bed so that I can wake up at the butt crack ass of dawn to try to make it in time!!

20120120-000125.jpg

Tentative Success!!

Today was Eli’s third day of school and I must say that I am tentatively thrilled!!
So far so good! He seems to be happy when he gets off the bus at school and he promptly takes his coat off to hang it up (as opposed to his first day!). According to his teacher, he interacts well with his peers and teachers. They all love his endless dimples ūüôā

20120118-212444.jpg

He tried to pull his usual non-compliant act with his speech therapist, but she was not fazed. She PROACTIVELY called me (I love her already) to tell me that he is a stubborn little guy, but that she doesn’t give in and plans on working towards using the PROMPT method with him when he gains more rapport with him.

Yesterday he had gym and computer class, today he had career day where a firefighter came with a fire engine to talk to the kids, and tomorrow he has music class. Just the thought of Eli being exposed to so many different activities makes me so very happy. This is my dream come true for him; what I had always envisioned for him. It makes me want to do the Snoopy Happy Dance! I am aware that everyday won’t be peachy and that he will have bad days, but for now I am relishing the good days. One day at a time….

20120118-211835.jpg

I am now preparing for a crazy next two days!! I took two vacation days for tomorrow and Friday to attend the Talk Tools seminar on feeding and speech clarity on Long Island. Hopefully this will give me some new ideas on how to help Eli on my own with his apraxia and feeding issues. Ugh.. But I have class back in Jersey on both days so I will have to race out of the seminars on both days to battle traffic and hopefully make it back in time for both classes. I was born and raised on Long Island and I LOVE going back, but I HATE the traffic. It’s ridiculous! I think the Long Island Expressway has been under construction for as long as I can remember!
It would have been great to see my grandparents and other family, but I really won’t have the time.
Bummer ūüė¶ Once things get back to normal I really have to get my act together and see them!

20120118-211557.jpg

Here we go again….

href=”https://laviejita78.files.wordpress.com/2012/01/20120111-230102.jpg”>20120111-230102.jpg

As I was sifting through an obscene amount of emails at work today my phone rang and I looked over at my the caller ID. It was Eli’s school calling.. Oh boy… Something was telling me that this would NOT be a good phone call.

I picked up the phone nervously and said hello. His teacher went on to explain that it was Eli’s second day displaying very defiant behaviors. He fought her on everything; from coloring to snack time to playing with friends. A classmate snatched a toy away from him so he shoved the little boy to the side. When his teacher tried to make him comply with an assignment he yelled no and swatted at her. So here we go again…

He had gone through a good two months with no defiance issues. I would hold my breath everyday as I saw his teacher’s phone number on my caller ID and waited for his daily update. Everyone has their bad days, but with Eli the bad days are so much more pronounced since he has no words to communicate. When he does try to use the words that he knows they are so garbled that few people understand him. So the only way he can express himself are with non compliant actions; pushing, yelling, etc. I can only try to imagine how frustrating it must be try to tell people what you want with babble, gestures, jumping up and down, only to get the ‘Scooby Doo face.’

20120111-231525.jpg

<a

To add insult to injury, his teacher also threw the dreaded term ‘possible regression’ out there. I felt chills run down my spine. There are few terms that a parent of a child with a special needs hates more than to hear the word ‘regression.’
It basically means that all the progress that your child has worked so hard to achieve is starting to roll backwards down the hill. I pride myself in considering a painfully realistic person; even when it comes to my son. So I am not quite sure how two days of bratty behavior would constitute a regression, but nonetheless I will keep a sharp eye on my little guy.

I am especially worried since Eli is scheduled to start his new school this coming Monday and I can only hope that he revert back to the sweet little boy that I know he can be.

Sigh… Things could be worse, but I can’t help to feel the slow poison of anxiety and fear begin to spread through me again. I just pray that it’s only temporary.

Gratitude…

There are days that my children drive me to drink… When I longingly look at my passport and dream of running away to a sun soaked beach that has a big sign that says, “NO KIDS ALLOWED!” Even if it would only be for a day…

20120110-231206.jpg

Ok so that isn’t exactly realistic, but I would settle with for being able to go to the bathroom without an audience or just to read a book in peace for an hour…. I look at my best friend from high school (no kids yet). She talks about all the exotic places that she has travelled to and all the wonderful experiences she has encountered as she lives abroad…. I think to myself…”Wow… what I would do to live life that carefree again!” No screaming kids, no worries, no IEP’s or major stress for that matter. Sigh, it does sound kind of nice, doesn’t it? I usually feel that way after a particularly trying day at work or maybe after talking to Eli’s teacher about how he pushed a little girl to ground because he grabbed her toy, or after paying the bills.

Before I become a pitiful mass of snotty tears, I stop what I am doing and look at this picture:

20120110-224019.jpg

My mom had snapped the picture as she babysat for me one night while I went out with my aunt and cousin. The minis had a fun filled day touring Charleston during one of the hottest summers on record. Still, they were sad that Mommy wasn’t there to put them to bed so they just passed out while they tried to wait for me and watched cartoons. When I came back from my evening out my mom showed me this picture and it literally made my heart swell with love and gratitude.

I realized that I made these beautiful, perfect little creatures. I carried them for 9 months and besides Hubby no one else knows them as well as I do. They love me when I am happy Mommy and sad Mommy.. When I laugh and when I yell… When I look hideous and when I am done up and ready to go to work. After a long day at work they come running to me to strangle me with bear hugs and cover my face with kisses. They are love in its most perfect form. They are mine and I love them fiercely.

After I stared at this picture the first time I saw it, I forgot about the palm trees and quietly snuggled up next to them, falling asleep and holding their hands….

8 Things to Remember as a Parent of a Child with Special Needs

I don’t think that very many people ever say when they wish to have a child with special needs. Most people just assume that everything will go perfectly, without a hitch.. Whether you realize it during your pregnancy, at the moment you give birth or with the slow realization of missed developmental milestones; I don’t think anything can fully prepare you for what to expect. If someone had told me 5 years ago all the trials and tribulations that we would go through I don’t think I would ever believe it….

20120110-001928.jpg

So here are 8 things I learned along my smooth, bumpy, hilly, mountainous journey:

1) Beware of the internet!!!! When you first walk out of Dr. (insert the name of your preferred pediatric doctor)’s with a diagnosis or when you first start to get a gut feeling that something is not right you will be tempted to research the internet till the wee hours of the morning. There is no doubt that the internet can be a useful tool and give you ideas on therapies/medicines. However, beware of information overload! It can also take you to the brink of insanity (ahem… me being a case in point) with conflicting advice that may not be applicable to your child. I am not saying to not use it; just be careful.

2) Keep clear and concise records of doctor’s reports, therapist evaluations, notes. I know the sheer of paperwork that you have compiled over the years is probably equivalent of the Redwood National Forest. My suggestion is to scan them on to your computer then make up a back up of that on a thumb drive for portable access or perhaps an external hard drive. Keep a yearly notebook with notes that you may take at meetings and phone calls with school districts.
As far as having all your paperwork in order for your IEP meeting I found My IEP ToolKit to be particularly helpful tool. This binder with specific tabs easily help parents get the mammoth stack of paperwork organized and whip out whatever obscure piece of paper the child study team asks you for at a moments notice.

3) If you are at the stage where you are dealing with school districts, then I am sure you have heard of horror stories of dealing with uncooperative school officials, etc. I even have some battle scars. Go into your meetings alert, informed and educated in your rights, but don’t start off your relationship on a combative note. Check out your state’s parent advocacy agency. I can tell you that the Statewide Parent Advocacy Network (SPAN) provided me wealth a knowledge for advocating for own child and taught me what my child’s rights were. If you can take training courses hosted by these types of organizations.

4) You are not alone. Yes you will feel alone many times during your journey. You may feel alienated from your family that is either in denial or that thinks that you are overreacting. Heck, your spouse may even be in denial and this can be the cause of many arguments. There other people out there going through the same things that you are going through.
My advice? Seek support groups in your community or blogs.Try to find other parents that are going through similar experiences as you are. If you feel that your relationship/marriage is suffering then try to find a therapist that has experience in dealing with relationships affected by special needs.

5) Don’t neglect your other relationships. Dealing with your child with special needs may monopolize a lot of your time, but don’t forget that your significant other or your other children still need you too. I don’t mean that you wouldn’t take care of your family’s basic needs, but REALLY try spend time with them. That was my biggest mistake when I first started going through all of this. Of course, I still loved my husband and daughter, but it’s almost like I put them on the back burner when I made Eli the little dictator of my universe and I paid for it dearly later. I know it’s easier said than done, but try to keep a date night as often as possible (without the kids!) and try to give other the kids undivided attention when possible. I try to go to all my Boogie’s extra-curricular activities.. I think it makes her happy when she can look over at me at any given time and see me there watching her swim or play soccer.

20120110-002814.jpg

6) It’s easy to forget yourself in the chaos of your daily life. Again, yes I know, easier said than done.. I know I am going to get some snorts of laughter here, but try to get away from it all for a little while. Take a walk somewhere, window shop, sit in a park, get a manicure, read a book without a kid tugging at proclaiming that they are starving. This is so very important!! If you don’t do this every once in a while, you can just end up burning out. Trust me it happened to me… One blubbering mass of crying mommy/daddy is no good to anyone!

7) Don’t beat yourself. Many times I blamed myself for everything happening…
“Maybe if I hadn’t skipped my prenatal vitamins when I was nauseous and couldn’t keep anything down?” or “Maybe if I hadn’t broken down and eaten that one California Roll that I was craving?”
Placing blame or torturing yourself is not healthy and is counter-productive. Just keep it moving!

8) Last, but not least love the child that is in front of you just like he or she is. At the risk of sounding too corny or kumbaya-ish, appreciate the little things. Yeah, your neighbor’s kid the same age as your 4 year old might be talking up a storm. So what your kid only speaks gibberish that only you can understand? That’s what makes it so much more delicious when you hear the words “Aaah ohhh oooh, Mam” (‘I love you Mom’ in Eli-ese)…

20120110-003006.jpg

Previous Older Entries