Incomprehensible….

There are few times where I am truly, truly shocked and disgusted by humanity. Doctor’s that feel that they have right to play God and choose who has the right to live and who doesn’t. Better yet they feel they know who DESERVES and is WORTHY to live.

I can only understand the frustration and helplessness that little Amelia’s parents must feel.
God help the doctor that would ever THINK of saying that my son is not WORTHY to be saved with an organ transplant because he is developmentally delayed. I am just so angry at how this hospital and their representatives can be so heartless and cruel…

Today is one of those days that I wonder what the hell is going on with this world… I hope that Children’s Hospital of Philadelphia will renew my faith in the goodness of the medical profession and do the right thing; help this little girl live. They have no right to play God….

In the meantime, we can help by signing this petition

We can still make a difference.

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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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Apraxia for Dummies…

Occasionally when we are out with Eli we’ll get the ‘look.’ It’s the look that all parents of children with special needs have gotten at one time or another; the look that we absolutely despise.
It is an expression mixed with pity, annoyance or curiosity; depending on how Elias may be acting at that moment in time. I try not to lose my patience or shoot them back a look that could kill and I do my best to realize that these looks come from not understanding what they are seeing. Usually I get them the most when Eli is really happy and starts saying “eeee, eeee, eeee.” Or maybe it’s when we are standing on line at the store and people ask him questions and he gives them a blank look or he just babbles some unintelligible baby babble at them. Not would you expect from a 4 year old that is off the charts in both height and weight.
Sometimes I wish that they would stop staring at my kid as if he was some sort of circus freak and just ask me about him. I would tell them that he is just a regular little boy, that he isn’t dumb or stupid. That he laughs and gets his feelings hurt like anyone else. Then if they weren’t completely mortified I would give them a little lesson in apraxia 101.

The Childhood Apraxia of Speech Association of North America (CASANA) and CHERAB are invaluable resources to understanding Apraxia and how to try to treat it.

According to CASANA’s website the definition of childhood apraxia of speech (CAS) is as follows:

Childhood apraxia of speech (CAS) is a neurological motor speech disorder in which a child has difficulty rapidly, accurately, and consistently producing and timing the movement sequences needed to produce speech. CAS is not due to having weak muscles for speech. There are several characteristics that are generally accepted to distinguish CAS from other types of speech delays and disorders.

However, speech is not the only area of development that is affected with CAS. Many areas such as feeding, gross and fine motor issues can accompany the speech issues.
In Eli’s case all of these areas are affected. He has always had trouble with activities involving fine motor movements such as puzzles or coloring. It is difficult for him to do so he gets frustrated. Therefore, he would rather not do the activities that he finds challenging. If a therapist or teacher tries to make him do it then he will begin ‘the behaviors’… Eli will start to cry and throw the puzzles /crayons on the floor; he will drop to his knees and refuse to move. Maybe he will try to be charming and just giggle his way out it and look so impossibly cute that the teacher/therapist will give up. If that is the case then Elias has won temporarily, but it can seriously affect his future if he continues this behavior. First of all he won’t learn anything if he doesn’t cooperate. Second; he will be given labels that are not necessarily applicable to him. The key is finding the right combination of therapists that will NOT give in his handsome dimple filled smile or strong willed attitude.
I comfort myself with the fact that we caught this early. All the therapy that he has receives (occupational, speech and maybe physical therapy) will hopefully give him the tools to succeed and eventually be mainstreamed.

The prognosis for CAS? After reading the material in the link you can see why I would have mixed feelings. There are reasons for hope and reasons for worry. When the feeling of anxiety for the future begins to over power my body I simply turn off the computer and remember that I am not alone. So at the risk of using a cliche (to some I might even sound corny), I put Elias in God’s hands. I pray often for strength to keep fighting for him and not lose my patience when he is driving me absolutely insane. A pilgrimage to St. Jude’s healing mass (where ever I can find one) is done every year. It is this faith in God that keeps me going.

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‘Team Elias’ at our first annual CASANA Apraxia Walk in Bridgewater, NJ
I had just gotten his diagnosis 2 days before the walk.

So after all this I think that person that I plan on teaching Apraxia for Dummies to…. He’ll either leave more sensitive to dealing with the differently abled… Or he’ll run away petrified for his life after dealing with me and call the cops for harassing him 😉

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.