Back on track!! (For now)

Ok so I am admittedly horrible at keeping New Year’s resolutions! Not only did I fail miserably at my diet goals (I actually gained 15 pounds), but I didn’t keep my promise about continuing my blog.

So dammit! Now I am back on track! Between, school, kids and work it’s been a little crazy to say the least… Hubby has had to pick up a lot of slack and it hasn’t been easy. Even with his help I am freakin’ exhausted constantly and dragging myself around….. I have got to get my butt back to working out!

However, I am still no longer smoking (yay) and still in school, doing well! My determination there hasn’t waned!! I’d like to be done with my associate degree in a year so that I can transfer to a 4 year school ASAP.

Eli is doing well in his new school. I am blessed to have a wonderful team working with Eli. These ladies have hearts of gold and the patience of saints! Honestly, I don’t know how they do it, but they have found ways to work around his bull headed ways. They don’t give up and are determined to help him which finally gives me the peace that I didn’t have before. Speech therapy was increased from 2 times a week to 3 times a week and physical therapy two times per week was added to the mix. The physical therapy is new to the IEP since he is walking and on the surface looks ok. However, when further observing him you can see that he doesn’t have the fluidity in his movements that other 4 year olds have. He almost seems to toddle at times. When he was evaluated it was found that he has low tone in his upper body and his balance leaves more to be desired. Occupational therapy stays the same and he still has speech privately here at home 1-2 times per week. This is the comprehensive plan that I had been dreaming of for Eli! I am so happy with his new school, his teachers, his therapists. He even loves his bus driver and is thrilled to see the bus aide and bus driver every morning. Eli’s progress is slow, but moving forward! More and more approximations, words and new things in general are sprouting all the time. Yes there have been times that Apraxia and what it does to Eli has brought me to me knees with tears and frustration, but he is such a resilient little boy.. I admire his determination and guts (ok not so much when he refuses to be potty trained : / ).

Boogie is great! Doing wonderfully in school! She’s done with cheerleading clinic and swimming for the season, but still in Girl Scouts.  She is so extroverted, athletic and happy.. I am truly blessed. Thanks to grandma, Adriana will be at an awesome camp at a lake where she will be outside all day long. She is truly a joy; I love having a daughter like her 🙂

Though I trip and fall from time to time (lick my wounds and put some band-aids on) on the road of life, I eventually meander my way back on track….. Thank God.

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…

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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:

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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….

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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.

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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)…

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The burn / The call to action

There are very few things in life I was definitely CERTAIN that I wanted to do or that I BURNED to do. I knew that I wanted to be a mother and I knew that I wanted to make a difference in the world, but I wasn’t sure how. After all, I am not gifted at anything in particular… I am not an amazing artist or musician or writer. I am ok at moving goods from point A to point B or getting a good rate on freight, but woo hoo! Hey, not everyone has to be renown for having that ‘burn’ for something. So I had my daughter then my son and I thought that was my calling; being the best working mom that I could be. I was ok with that. Then my son Elias threw me a curve ball. Little by little after he was born I started realizing that something was not quite right.

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I couldn’t really put my finger on it, but I could tell that he was different. Everything took him way longer to do; from sitting up to eating solid foods to just talking. Starting at 8 months old there were endless neurologist appointments, developmental pediatrician appointments, early intervention, speech therapist and occupational appointments (just to name a few). Everything from possible autism, MR, CP, etc etc was thrown at my little guy. What did I do for 3 years? I cried, ripped my hair out, lost 50 pounds and almost lost my job. I wondered why me? Why my little boy? I didn’t understand where to begin or how to fight to get my son the help that he needed. I felt like a failure. Then one day I met Portia at the feeding clinic. Elias was still eating jarred baby food and he was almost 4 years old.

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I was a hair away from getting divorced and it was a miracle that I hadn’t gotten fired for all the work I had to miss due to Elias’s appointments. Portia was a single mom to 3 sons; two of which had autism. She could sit there and cry like I had been doing for years, but she wasn’t! She amazed me every morning how she would whirl into the feeding clinic perfectly dressed, looking like a model out of Ebony, full of laughter and smiles and with something else that is imperative, hope. She sat down with me one day and took out her little black book full of precious resources and told me who to contact to help my son. She gave me advice and she shook me awake. Portia made me realize that just because my son was different didn’t mean that I shouldn’t plan for a great, productive future for him.

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Most importantly she lit the first spark of passion in making me want to do everything I possibly could to advocate for my son. Since then I have taken every course imaginable on how to advocate for not just my child, but all children with special needs. My school district learned that the bawling parent they had in front of them for Elias’s first IEP meeting was no more. There would be no more pushing around Eli and Jen M. My little boy has taken me down paths that I would have never ventured through before. I would have never met someone like Portia or even cared enough to learn about children with special needs like I do now. Ok so I am not an artist or chef or writer. I do however, ‘burn’ to help others. I want to empower, educate and help other parents the same way that Portia helped me. Elias is apraxic, non-verbal with global delays, but I want to help children and their families no matter what the disability.