How is everyone's day? Mine is eventful to say the least. That's everyday around here though. Have any of you heard of E.C.I. or DEBT? I'm working with our local/district ECI with my daughter and they are Awesome. My understanding they work with mother's who have high risk pregnancies and special needs kids up to 3yrs old. I'm here to tell you I couldn't get through some of the things with my daughter that I have without them. My daughter has Epilepsy, CP, and Failure to Thrive. She has a feeding tube that she could vary well have the rest of her life. By the way she is 23 months. We/I/ still don't know the extent of brain damage she substained at 3wks when she was a near SID's baby. To this day I still catch myself watching her sleep at night. Now as far as ECI. You can check with the hospital or schools in your area. These chat rooms are a major help too.

My daughter is tube fed as well.

I have quite a few resources online that I would be willing to share with anyone who wants them. Mostly groups online that deal with support and a great equipment exchange group. I get daily digests on most of them and just read them all at once or you can go online and read them straight from the group site if you don't want mail clogging up your inbox.

I have bought and sold tons of used equipment that way. So much cheaper for things that insurance won't pay for or something you just wanted to try.

Heather I'm like you in many ways no support from the dad. Oh and by the way I have a son who has ADHD too. Yet like Britgal I just sit down and cry my head off at times.

works both ways. I have a little boy with some autistic querks. Mother has not seen them in 2 years.

works both ways. I have a little boy with some autistic querks. Mother has not seen them in 2 years.

I am also raising a special needs child. My son is 8 yrs old and was born with a genetic disorder called Lowe syndrome. Rare disorder, approx 2,500 cases known worldwide. He is developmentally delayed, working around 7 yrs behind. He doesn't walk or talk yet. He goes to school full time, and has all of his therapies at school intertwined in his normal daily routine. He also is autistic, kidney problems, was born with cataracts and had surgery to remove them at 2 weeks of age, behavior issues - biting/hitting/scratching/kicking. But is the most loveable child out there, those ready smiles, ready hugs and that belly laugh just makes me melt. He eats like crazy and just loves his Elmo movies. His father never sees him, but I think for us, its best as he isn't the nicest man out there.

njmom. Sounds like you're dealing with so much. I have a hard enough time dealing with my kids and their challenges, but man I couldn't imagine what you go through on a daily basis. Keep your head up. No matter what anyone tells you. You are an awesome person and a VERY strong person.

Agreed!!! You guys all rock! Your kids are lucky to have you!

I think I'm the lucky one to have my kids since I was told I couldn't have kids. Now I have two awesome kids.

Hello everybody....I was reading this forum and was so happy that you all have reached out to one another. I am a teacher of special needs children....and love my job!!!! I've taught 6:1:1's, 12:1:1's, and was team leader over autistic teams....until I missed the classroom sooooo much that I wanted back in the school. Traveling all over the county was really hard on me and my family of 4 children.

I hope that you don't mind me posting. I'm here for any support you would want. Just drop me an email.

Torey you're just as important to the kids as us parents. You fill the space in their days that we can't. So you're always welcome as far as I'm concerned.

Some Tips for Surviving the Holidays

Plan ahead and make your calendar your friend. Get one for 2009 and start carrying it for advanced planning.

The earlier in the season you plan routine check ups and regular appointment the less likely you are to be over booked or delayed waiting.

Ask about holiday hours and closeings. Know who is the back up doctor. Meet them if you can.

Check refills and make sure they are not going to run out while offices are closed or swamped.

Get home remedies while they are on sale and you are not trying to take a sick kid out or yourself.

Get decorations down from storage early so you can pick the earlier or at least dry day to put them up out side.

Hold off on putting too much up inside too early. It is added dust and stimulation at an already stressful time. You don't have to use all of your decorations every year.

Make a gift list and stick to it. Don't be guilted into giving caregivers gifts that you can not afford. Relize that shower a child with gifts will never make up for their disability or the sacrifices siblings make.

Make it clear that it is not ok to gift only your special needs child to the exclusion of siblings.

Make sure you are not booking appointments over siblings Christmas plans or school performances.

Take your flu shot and practice other preventive health measures like increaseing hand washing.

Schedule Respite care as early as possible. Remember your rest is majorly important to your good performance also. Have Mommy Time Outs in your schedule.

Modify traditions to fit your needs. It won't be the end of the world if you don't do things the way you did last year. Sometimes adding walks and or non holiday activites can slow down the pace.

Have a holiday free zone in your home where you and your child can escape the stress.

If the tree is just too enticeing for your child try putting it up on a table or out on a patio or in a corner where it is less likely to be focused on constantly.

Visit the places you plan to go and figure out accessibility issues before you go. If you are going to need special services make reservations early and re-verify a couple of times. Pre-pay with a credit card if you can. Have and alternate plan. Para-transit is always swamped during the holidays. If you have paratranist in one municiplaity it is universally accepted in others but you have to provide documentation and know the rules which you can get off line. Don't assume the driver will necessarily know all the rules.

If you are going to need a lot of equipment in a distant location consider mailing it ahead so you don't have to transport it. Insure it for loss or damage. It may be better to rent ultralight or smaller versions that are easier to disassemble. Check for lending programs.

Consider having family gatherings at a hotel rather than taking your child into an environment where you can't get around to bath or toilet. If various familys rent a block of rooms often the hotel will comp a suite. This is often amicable to older family members that want to host but really can't reorient there home for special needs children.

Plan Holiday menues in advance so you can do some of the steps on less busy days. measure dry ingredients and write recipes on baggies. Freezing cookie dough in mellon ball shapes makes it much easier to bake and carry. It is ok to buy some things ready made. It is ok to have guests bring pot luck dishes. If you have help see if they can pick up special ingredients or even a food basket for you.

Ask for help early and remember that if you are strapped with medical expenses often you can get food and toys to relieve dollars for other areas.

If you have a special needs child make certain you are on medically fragile utility discounts and emergency services. If the power goes down they will come to you first.

Write your holiday letters early and address envelopes in the car while you wait. Make sure it doesn't sound like a medical report or focus only on the special needs child or exclude them.

Don't take your special needs child where the majority of the visit is a lesson in the disability. Provide your hostess with the infor- mation they will need about your situation in advance. Most disabilities have groups that can provide well worded and current information about the disability to your hostess or family members. You don't realize how much you know that even people who love your child don't. Useing medical terms or even accurate names for body parts is going to be offensive to some. Modesty may have a lower priority at your home than others. Try to be respectful. If you are going to need your child to use a covered cup or diapers to protect your hostessses good carpet ect. get your child used to the transition before the last minute. Carrying a change of clothes and protective underpads is essential. You frequently can not buy child size diapers anywhere close to and airport.

Occassionally family visits "blow up". A lot of hidden feelings can be a part of the reality sinking in that a grandchild or step sibling is disabled. People can carry a lot of guilt and anger and greif that sometimes makes people do stupid things and sometimes play it off on other things. If you can sometimes it is part of the reality of being a person with a disability and your child may just have to deal with it. If it is severe be prepared for alternate houseing arrangements. Expect siblings to be upset also; maybe more so. Children tend to idealize Grandparents and a disabled child being the catalyst for yet another loss can be devastateing. It may be better to have seperate visits. You have had time to come to terms with your situation but various family members come along in their own speed. You have a right to your feelings but don't burn bridges that you may someday want.

If you have to carry medications or expensive equipment consider buying a locking tool box. It might prevent a serious injury or poisoning. Unfortuneately sometimes families do steal things or commercial services staff. Do have documentation that what you carry is prescribed.Don't be alarmed if they ask to search your medications. If a sensor allerts to pharmacutical dust they are required to. Search dogs are not pets but they well trained and I have never seen them hurt a suspect without being commanded to do so. If this occurs don't be surprized if this story "gets around".

If you are going to leave your home for a period of time ask the police to do a close patrol. Medical equipment and medications are favorite targets of theives who can sell it almost immediately. Ask your local vender or saftey program to engrave ident numbers on all removeable parts and the main piece of all equipment.

If you can carry a lap top or blackberry so that you can access local assistance if the enevitable emergency arizes it is helpful.

Airline people are not going to upgrade you just because you have a disabled child. Ask about seating and realize the seats nearest the toilets are not going to recline and your child will be chronically stimulated by people walking by. Know your rights as far as air travel and compensation if they deny your boarding it is very minimal. Getting upset will not help your case. Be aware you may be openly discriminated against by other passengers but the airline is not responsible. Sometimes it is actually easier to take several shorter flights with longer lay overs than be crushed for time but it ups your risk of being bumped and looseing your luggage. Occasionally Angel Flights will accomodate special needs children. Especially if your child has a scheduled evaluation at your destination.

Put id tags on every child while you travel. You would be amazed how fast and how far they can get away from you in an unfamiliar location.

Don't assume that someone won't take your special needs child if for nothing more than the wheelchair, hearing aid, electronics, or coat he might be wearing. Note what your child is wearing in your calander and carry current photo ID's.

Last but not least work toward a happy holiday atmosphere that allows your family to be as normal as possible. If your child is fragile don't be over permissive because it might be the last holiday because everyone is already aware of the possibility and that will only amplify the stress. You never know the miracle of the holidays to transcend and create peace and healing. Have a Blessed Holiday Season...Star

Thank you so very much!!!!

Pacific Star....what a terrific job coming listing all of those VERY IMPORTANT things to remember with the holidays coming up. Great advise. Something I realize is that although a child is not bothered by nor exhibits behaviors in school it could be the NUMBER ONE issue in the household. It's sooooo important for parents to keep good communication with the school staff. I am having meetings with my parents and the behavior specialist so we can address home vs school issues and we can be a better support for the parents. The meetings have gone extremely well and we're seeing major improvements. The behavior specialist is available through an outside agency and the rep. has been wonderful with working around our (parent/teacher) schedules.

They normally are good with the support systems in school. At least here they are. The teachers like yourself are priceless to have. Oh thanks Pacific Star..:):)

So how did everyone manage Halloween??? My students were wired today!!! We did a lot of hands on activities due to that. Got them in the gym, went swimming and for a long walk. Tired them right out....so hopefully they'll go to sleep for their parents early tonight.

Have a good week everyone.

We managed to get through it pretty good. I definately understand the sugar overload.

Hi everyone!
I'm also a single parent of two special needs children.One has mental retardation and autism and the other has ADHD and ODD. I have also provided respite for parents of special needs kids and also use to be a day care teacher

Hi challengingmind welcome in. The more the merrier. Well how's everyone? In doing good impatient but good. I ordered my daughters wheel-chair yesterday and now I'm waiting to get it in 2 months.

Kentucky has a multitude of resources for parents. A few to get you started are:

Annually the Developement Disabilities Councils has Parent Conferences which are awesome. They have quarterly newsletter with calendar of events and tons of information. There are scholarships for parents to attend.

Kentucky Coalition For People With Handicaps is a state wide council of both disabled adults and parents. Contact the Lexington Red Cross.

Kentucky KSPIN is a statewide council of Parents that has all kinds of peer referrals. Contact the Lexinton Red Cross.

Commission for Handicapped Children centered in Louisville Kosairs Charity Center (near the horse track.)is a comprehensive program for children with at least twelve information libraries statewide.

All army installations have a program called the Exceptional Family Member Program and they frequently know of resources and programs includeing parent support groups. If you want to start one they will help you.

Ft.Knox Ketuckey has a superior program open to military and civilian children annually called Golden Field Day where the paticipants have a wonderful play day and get garments for participateing. Parents and families and hundreds of volunteers attend. Contact the Post Information number to get information on how to get your child enrolled.

WINTER CLOTHES

As tempatures dip and winter clothes become nessesscary it can put a major dent in the budget.

Some credit card companies give out so many dollars off certain size purchases. If you don't have a credit card often friends will help you out with their discount. Still thank this person with a note or a picture your child draws.

Some stores do have layaway programs. It can be really helpful. Don't forget your pick up dates because you will forfiet a certain fee for processing.

Shopping for clothes on line can be a great way to save money. All Season's Clothing.com is a favorite of mine since they have a variety of sturdy high quality garments with a variety of features to include monograming. What is a great feature are the sturdy two way zippers and attached hoods. (Fewer purchases of stocking hats needed.) They also have insulated pants and vests and an assortment of closures includeing velcro. They also have a variety of colors so you can buy siblings identical coats but a variety of colors which is a great step saver. Ask about special discounts or free shipping days. Or quanity discounts.

Going together with friends or siblings can save everyone from 10-35% or more.
This especially true if you go together and buy a case of Hooded sweatshirts, seat sets. or other garments directly from Hanes or other manufactures. If you do this do NOT take checks as you can bet at least one of the quantity will bounce.

Most communities have a Coats for Kids Program that can really be great. Coats are new or like new condition having been professionally dry cleaned.

Salvation Army Angel Tree program not only provides wishes for toys but garments.

Parents Without Partners chapters occassionally have clothing swaps. As do Churches or Daycare. This is and easy activity to put together in any large groupe.

Thrift Store shopping is a great way to get coats for kids and yourself. It does help if you do it on the day that month that marks down inventory in that department on that day. Many have calendars so you can benifit from the bargains.

The biggest thing to really save money is to buy a permenant laundry marker and put your name, address, and phone number (or at least the full phone number) on your child's garments. Stores, bus driver's, and schools have a large collection of winter wear by spring mostly because they don't know how to tell you to come get it.

If you have coats that don't smell so great after storage try washing them with one-quarter cup ordinary household ammonia to a large load of wash. It breaks out perspiration and oders really well.

For those of you who are single parents and recieveing public assistance your social worker does have a certain amount of discrecenary funds for children that have special needs. Ask early. If your child is in a residential care facility that takes their social security and SSI they are intitled to quartlerly clothing allowaces. Hope this helps. Stay warm. (((HUGS)))