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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2 Comments (+add yours?)

  1. Express Yourself SLP
    Jan 11, 2012 @ 14:09:00

    Wow, what a great post! I am bookmarking this. I wish all parents could be such strong advocates for their children with special needs.

    Reply

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