Seizures and Brain Damage

It looks like you have gotten some great advise from everyone. I wanted to say I started a little online support type group for parents in my area of special needs children. I would love for you to join. I know it sounds like you stay busy but you could just post when you can.

I just now started it so its slow going but the more parents that join the better so we can use each other for support. Also to learn more about resources we need for our children.

http://health.groups.yahoo.com/group/Specialneedskidparent/

My son is 2 yrs old and has a brain disorder and visual impairments. Currently he is in the Early Steps program. He also gets therapy at Shumpurt KIDS clinic. When he turns 3 he will start a new program where he will go to school. I am assuming that is probably what your son is in.

My daughter has siezures too.
I wrote a letter to teachers explaining what happens during a siezure so that they can recognize it. I also made sure the school had the proper training available for her teachers. As far as the general public, I tried to explain to people what she has and I got alot of personal experience stories and not alot of help. Most people don't know or understand siezures.

As a general rule of thumb don't tell people unless they need to know because they are directly responsible for her care or will be a constant part of her life. The cashier at the store doesn't need an explaination if your daughter isn't "acting her age." Your daughter needs your confidence and strength for when she gets older and has to deal with these people on her own, and you don't want her to be making excusses for her disablities.

Developmentally, I suggest talking to professionals, but don't assume they are totally right or your not doing it right cause it isn't working for your daughter. Several people have suggested some great places to start. I recommend that you research your community. Start with your doctor, the hospital, schools, library, and government. A quick trip to the Chamber of Commerce could give you some great leads. Social services and childwelfare organizations aren't all bad either, just cause they work towards getting children out of bad situations doesn't mean they will take your kid away. They have lots and lots of info about the community and can give you good advice.

Research tips:
1.Name the disablity not your child when you are asking information. No one needs to know why, or who, your looking for this information.
2.Make phone calls productive. Write down your questions before you dial and have a pen and paper ready when you start talking. This is also a good idea for face to face meetings.
3.Don't be afraid to ask the same question to each organization. Not everyone has the same information or the right information for your family.
4. Make a list of what you need and a list of what you want. If you need special services then that should be at the top of the list. If you want something for your daughter don't be afriad to ask for it. (A lot of parents don't think they can afford the special equipment sometimes needed for special needs children so they don't ask for it.) There are groups that provide used equipment or rent it out if its really expensive.

Libraries sometimes have educational toys the are loaned out just like books. Talk to your doctor and find out where her development is. Ask for specifics. Then you'll know what educational toys will actually help.

If you need help researching you can come to me I'll help. ____@____.com
Jen

Various websites for autistic children have a business card printout available (don't have it,never did it) that basically says I know my child's behavior may be disruptive, but he/she is developmentally disabled-autism, and we are doing the best we can to ensure he/she develops and socializes appropriately. (or something to that affect) and then they list a website for autism. Now, here's the next thing, and please understand that I have a child with Autism, and am constantly searching for things that may help my child. There is a company called Manatech, that has a product called Ambertose. Ambertose is purported to help the body heal, and they have documented some incredible changes with children with Autism and Downs. If it truly heals and helps the body restore what was damaged/lost, it could help your child. I do not sell the product, but I douse it. I signed up to sell, but the truly would rather just pay someone to order it and get it to me than have to do all that myself and be involved in it..so I only buy from others and dropped any selling aspects. I guess the set up is like Amway, but if I had not seen the changes in my child and others who are using it, I wouldn't mention it. Let me put it this way, I know money must be tight, but it can't hurt to try it and see if it helps over a period of time.

Contact your pediatrician and ask them for the number for ECI (Early Childhood Intervention). If they don't have it, email me privately and I will get it for you. They are funded by the state to work with kids/families of developmentally delayed children. Also, get hooked up with a pediatric Occupational Therapist. The one my son uses has a speech, occupational, physical, and developmental therapist all in the same place. They are wonderful but I live in Kingwood. If you need a referral, ask your pedi. You have to be a proactive advocate for your daughter or they will just tell you not to worry about it, she will do better if you work for her and not let her be directed by Dr's.

Good luck
C.

My son was able to go to public school at 3 because of his disability. The program at the public schools is called PPCD, I'm not sure what it stands for but he started at 3 and is now in Kindergarten. You should contact the public schools and see if she can attend. Hope that helps!

Also, I noticed someone mentioned ECI, they actually stop at 3 but that is when the kiddos get to go to public school. Maybe ECI can help you figure out how to get her in public school.

A., I have a niece that was also diagnosed with seizures since at a very early age. If you havn't been told, during the seizure, keep your child should lying on her side so she won't choke on her tongue. Stay with her throughout the entire seizure, talking to her, comforting her and being there for her. Bye toys of "brain progression", as in puzzles, Legos, toys that will keep her mind/brain occupied. Watch her, make sure she doesn't seem to look out into "space." She may be in a "pre" seizure stage at that point and can be "talked" back into reality. Sad to say, she may never grow out of this, but please be patient with her and be there for her.

D., father of 1 daughter of 24 and two sons, 22 and 14...and birth doula.

I would buy educational and also some dvd's of her favorite characters for you and your daughter to watch during the time you do have with your daughter. Music is also very important as it uses the other side of the brain. I would read short stories to her as long as she is enjoying it. There is nothing as healing as the attention and love of a mother who really cares. God bless you and keep praying.

I would contact The Briarwood School in Houston. I do not know if they have a pre-school program, but even if not I bet they can direct you to some helpful resources. Best wishes.

Dear A.,

You've gotten some great responses. I just wanted to add one more thing that I was thinking of.

I've noticed how easy it is (myself included) to talk about children to adults around without thinking about the fact that the children are soaking in every word. So I just wanted to encourage you to have only positive words to share with the adults around when explaining your daughter's condition - or to wait until you can speak privately to fill them in. That way, she won't be further limited by the expectations she sets for herself based on what she hears - rather, she'll be lifted up and think better of herself.

Praying that you receive all the support you need!
Blessings,
R.

Supporting you as you nurture your family.
www.NurturedFamily.com

My oldest child has been having seizures since she was 2 weeks old she's four now. I understand what your going through. My daughter has sometimes complete meomory lapses to were she doesn't know anything or anybody after she has had a seizure a lot of times it's like having a four year old body with a one year old's mind. I have founf that is you play meomory games, make an album of their favorite toys, family, colors and other things like that it helps and is a bit easier to work on with your child. Good Luck and may God Bless!

If you need to talk then I'm here for you at anytime!
E. Silva

Good Morning, A.:

I hope this e-mail finds you doing well this Friday morning.

I know you didn't mention that your daughter was diagnosed with Epilepsy, but I talked with a friend of mine who use to be on the board and she suggested that you get in contact with
the South Texas Epilepsy Center. Here is the link to them www.texasepilepsy.net and they are located all over San Antonio.

I am sure they will be able to guide you and to even get you into a support group with other parents who are in the same situation.

Being a single-parent is hard to begin with but this can make it even harder. I also believe that if you put the situation into the hands of the Lord and ask for guidance He will help. Miracles happen daily!

Bless you and your daughter,
G. and Girls

Hi A.-

I have an 8yr old son with Autism. Although he looks normal (especially at a glace) once you are around him for a while you can see a difference between him and other kids. When he was younger I found the easiest thing to do was to compose a letter explaining his situation and a little bit about what life was like for him (especially good with sensory problems) and kept several copies on me. That way I didn't have to expalin the same thing over and over. Then after they read the letter if they have any questions I am more than happy to answer them. I also bought a couple of extra copies of books that I especially liked and gave a copy to his principal (once we mainstreamed him into a private school) and donated one to the teacher's library so that each year his new teacher can look it over or refer to it to answer questions or how to deal with different situations. I also allowed his principal to have full contact with his psychiatrist when ever she wanted. That way if there was a particular problem that needed to be addressed that I didn't have an answer for she could call and talk to him. I know that every situation is different but I hope thses ideas are some help to you. Please let me know if they work for you or you find some other suggestions that work. I never turn away new ideas.

Ann,

I am going to tell you right now that it is hard. my son is 5 now and without useing all the medical terms he had a stroke in utro. he looks 5 but in most cases he is 3. and even I have to remind myself of that so how can I expect that the other people treat him normal. I think that sometimes when when I want him to due something important I will say he has to try. Than when he can't due something and get mad I often tell my husband lay off he is only 3 remember give it 2 yrs. he is on trileptal for sizuress, our sons brain damage is in the back left part of his brain. effecting his hearing, seeing , comprehending. I often just tell people IF they notice anything wrong that my son had a bad stroke early on. sometimes that is all they need to hear other times they need to hear more. the children that God gives us in this time we have to live it he must know that He can trust us to raise a special needs child. I myself have lupus and the lupus attaked my brain. fibro too. my father M.S. and my mom post polio. my mother was just 3 mo to early before the vaccine. I hope I was of some help. remember I am here. OH make sure to get her into PT, OT and Speech if she needs it and depending on your insurence. if you are on meicade state insurance than they will pay. talk to your Dr.

Jen H p.s, sorry about the missed sppelled words I an not think today for nothing..

you should contact your local Early Childhood Intervention. They will provide services for your baby. They can provide occupational therapy, speech therapy, physical therapy..the list goes on and on. and the best part is they can come to your house, or to you childs daycare to provide the services, and they should be free. My child gets services from ECI and becuase we are a dual income family, we pay 20.00 a month. so im sure for a single mom, it would be free.