I haven't had a chance to fully explore the EpilepsyMoms.com website. Good intentions. Just not a lot of time. Energy. Or motivation.
But I happened to skim today's email digest pre-junking. And the below article caught my attention.
It's filled with a lot of very practical advice. From a mom who's been there. Some specific to exactly issues I'm dealing with right now! And I thought it may be of interest to you too...
"Raising a child with a disability of any kind has it’s challenges and it will change your life forever, but there are ways with good information, support and lots of love, you can help your child reach the best of their abilities.
There are some important things I learned along the way that I think can help make your journey a little easier. It takes a little more work, but it can be done. I want to share these with you because most parents are overwhelmed and just need a little encouragement and direction along the way!
1. Don’t let the Guilt consume you
Every parent of a special needs child has guilt. If you’re feeling guilt regarding your child’s condition or feel you may have caused it, guilt over your decisions regarding their treatment, or guilt because you are unable to control your childs seizures, or any guilt at all, remember you are not alone. I recently did a podcast with Dr. Mittan and we talk about guilt at length. It will interfere with your ability to move forward so recognizing it and overcoming it is essential.
2. Don’t take the Criticism personally
People who do not understand your circumstance can be mean! They see something they are not comfortable with, or a bad behavour and they are quick to criticize. It can be hurtful and painful and has happened to me several times. Keep your chin up and let it go. Do not get into a debate with them. What I did was have little cards made up (the size of a business card). They simply stated “What you have just witnessed may have made you uncomfortable. My child has been diagnosed with _________ and does not always have the ability to act or say appropriate things and we are in treatment. If you would like to discuss this further, I would be happy to chat. call (name) at (xxx-xxxx). These can be modified in any way to suit your needs. They worked great.
3. Make time for other kids, spouse and yourself
This is huge and often overlooked when you are so consumed with your daily tasks. It is important to Keep things as normal as possible - have fun - go places - take short day trips. As a parent you will become overwhelmed fast so apply for respite. Someone will come into your home and watch your child so you can take a break, or they will take your child out.
It is important to keep both parents involved in the treatment and care of the child. Don’t try and go it alone – involve your spouse. Be aware that having a child with special needs places a huge strain on your relationship so you need to take time to date and spend quality time together without your child. It is equally important to make time for yourself - have lunch with a friend. Treat yourself to a spa treatment.
Take your other kids out - try not to put them on the back burner. They have just as many needs. Use the respite time to take them out and make sure they are praised for their accomplishments.
4. Read everything - Learn everything
It is really important to understand your child condition and to get the correct diagnosis. If you are incorrectly describing your childs seizures, your doctor might prescribe the wrong medication or treatment. Video tape the seizures for your doctor and do your own research. Early intervention is the key. The Internet will open a whole new world of information for you. Read other peoples blogs and experiences.
5. Go with your gut
Easy to say and hard to do - if you are not happy with what is going on, time to find your inner strength and face each challenge head on. Challenging your doctor, or switching doctors is not easy but could be in the best interest of your child. Remember that if you are wanting to try an alternative treatment such as the Ketogenic diet, quite often the doctor will not tell you about these treatments or may tell you it is too difficult. You must be persistent and do not stop until you are happy. Keep the communication open and be the “sqeaky wheel”.
6. Be money smart
Be smart about money. You may need to budget just to pay the cost of medication, cost of various therapies and possibly rehabilitation or special diet needs. Having a special needs child can incur additional expenses that can be major. Find out if there is financial aid available from local, state and government agencies. Keep all receipts together and check with an accountant on how you can claim expenses.
7. Have a strong support group
The Internet is full of great support groups. These other parents will understand what you are going through much more than anyone else. Learn from them and ask questions. Ask for help from friends and relatives who are part of the child’s life. Join your local epilepsy society and get on their newsletter list.
Have a meeting and explain your childs condition and abilities to teachers so they have a better understanding and can meet your childs needs. One of the things I did was get a note from my pediatrician to give to the teacher - in fact when we were having issues, he came to the school and talked to the education team.
Teach every child to have self-respect and discipline. Some may feel that disciplining a special needs child sounds harsh but it’s vital. Set limits based on the individual child’s level and ability to understand.
8. Choose your doctor
Choose the best professionals available. It is extremely important to get a BIG binder and start to Keep records. Record the diagnosis, and change if any. Write down each treatment, therapy, tests, appointment, specialist, therapists, facilities, and prescriptions. Record what worked, and what didn’t. Keep an accurate seizure record. Make a list of seizure triggers, anything that happened within two days of the seizure. Ask the doctor why they are pursuing the treatment and what the benefits are. Write it down. Allow a reasonable time line for any new treatment to work. Be involved.It is VERY easy to forget so a binder is essential so you can see at a glance the changes that are being made.
9. Journal your feelings
Writing down your feelings can be very theraputic. You will need to accept your child condition and love them as they are, not as you wish they might become. Take time to apreciate what makes your child special and celebrate each small accomplishment.
10. Grieve, get mad, then get to work
There is a grieving process - we will grieve the loss of what we had hoped for our child. We will cringe as we watch younger siblings pass them in abililies. We will have a tendancy to overprotect and shield them from the real world.
Once we get through the grieve and accept the condition, most parents will go through a stage where they get angry. Angry at themselves, the doctors, pretty much anything. They want badly to lay blame on what has happened or let the guilt creep in. This is normal.
The next stage is to get to work and follow all the steps outlined above. Become your childs advocate and work hard to make changes. Be realistic. determine your child’s strengths and limitations. Don’t try to force your child beyond his or her ability. Remember, this is a journey and not everything will work and not all advice is right for you. Be patient, give lots of hugs and make some great family memories together." -- by Arlene Martell