Practical Advice

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Practical Advice

Article Provided by The ARC of Georgia

If you think there is something different about your child…

Be persistent in seeking help. You know your child well. If one doctor
tells you that there is nothing wrong, go to another one.

When your child is first diagnosed…

It’s OK to be sad. It’s OK to be in shock. Take time to get used to it.
Find out if there are groups that you can contact (such as the Down Syndrome Association, Babies Can’t Wait, Children First or Parent to Parent of Georgia).
Find other parents to talk to. There might be people in your church, at your office or in your neighborhood who know someone whose child has a similar diagnosis. Don’t be afraid to call.
Trust your own instincts about your child. Don’t follow advice of well-meaning friends or family if you don’t think it’s right.
Don’t feel guilty if you didn’t realize that there was a problem right away, especially if this child is your first.
Call family/friends if you are feeling overwhelmed.
If your baby has to stay in the hospital after you come home, it’s all right to grieve. You don’t have to be brave all the time.

Raising your child…

Change your definition of success.
Celebrate all your child’s accomplishments. Some things may take longer than they did with your other children.
Be patient..
Love all your children for who and what they are.

Your extended family…

They may educate themselves about your child’s disability and become your “second brain”. They are your greatest allies - use them as much as you can. Take them to doctors’ visits, have them go with you to IEP meetings, let them take over for you when you need a break.
Often, family members will deny that your child is any different. They will believe that everything can be fixed. You may not get as many offers to help as you do/did with your other children.
Become the “family expert” in your child’s disability – offer to explain things as much as you think you can – once they know the facts, they may be less embarrassed and more comfortable around your child.
They may offer advice on how to raise your child or “be a better parent.” Trust your judgment and knowledge. You know best how to care for your child.

Talking to your other children…

Explain the disability as clearly as possible, at the level that is right for the child’s age.
Don’t try to tell them too much at a time. Let them lead with questions, and answer as honestly as you can.
Emphasize how much your child with a disability can do, and what your other children can do to help.
Be understanding of their feelings about having a sibling with a disability. Don’t expect them to always feel positive toward their sister or brother.

Record keeping…

Keep notes on everything.
Keep all your records in one place.
Keep all correspondence – you never know what will be important. Print out emails as soon as you get them
Document names, dates, and the nature of all phone conversations.
File everything by date.
Get a health record book that has room to record everything.
Keep a notebook with doctor’s appointments and record how it went, what the doctor said, what meds were started, stopped, or changed, reactions that happened.
Get a portable file box to use just for your child’s records. Keep useful articles in there, too.
Buy a file cabinet if you need to.
Use a 3-ring binder for each year with sections for each type of record (medical, school, therapy, psychological, etc.)
Use a 3-ring binder for each type of record.

Medical care…

Find a doctor who is familiar with your child’s disability, has worked with children with disabilities, or has a child with a disability him/herself.
Do your own research on areas that are especially important with your child’s disability (like eyes/ears/heart for Down Syndrome, loose connective tissue for Fragile-X or blood chemistry with Williams Syndrome). Keep your doctors aware of what you find and what they need to watch.
If you can, meet with doctors before they see your child, so you aren’t trying to explain things while you are watching out for your child.
You will probably have several doctors to deal with and will probably have more visits than with a typical child. Not all of your doctors may be good with your child.
Explain to your child what is going to happen before you go.
Take your child to the office of a new doctor before your actual appointment.
Try to make a special friend of someone in the office, so your child will have a “buddy” to see every time.
Bring a list with all your questions or concerns. Don’t leave until all of them have been addressed.
You are the expert on your child’s disability. Be positive, friendly and informative, but make sure the staff knows that you know a lot.
Be as assertive as you need to be in explaining how to handle your child.
Be willing to walk away from a bad medical worker or a tense moment, even if it means you have to come back another time.
Be prepared to be knowledgeable and firm if you have to go to the ER. The doctors there may not be familiar with your child’s disability.
Don’t be afraid to leave a practice that you don’t think is giving your child (or you) the best treatment.
You may have to interpret your child’s signals for the medical personnel. If your child is non-verbal and can’t tell you he/she doesn’t feel right, you may have to go to the doctor just because you think he/she is “acting different.”
If you think you see signs of illness in your child, you are probably right. Even if the doctor says there is nothing wrong, keep insisting.
Your child may need to be sedated for some procedures (like a hearing test) that typical children don’t. As long as it is done safely, don’t be afraid of it.
If it is too hard for your child to go to the doctor and if you are comfortable doing so, call the office for advice and care for minor illnesses at home instead of going to the office.

Dental care…

Find a dentist who has experience with children with disabilities .
See the suggestions for Medical Care above.
If your child has heart problems, be sure you get antibiotics before a procedure.
Go slowly. It may take several visits before you even get your child into the chair, and even more before he/she will let the dentist look into his/her mouth.
Explain as much as possible about what is going to happen.
Brush their teeth twice a day, if you can. Brush them yourself, if you have to. Check after the child brushes.
If you can afford it, consider seeing the dentist four times a year instead of twice.
If your child likes to chew, give him/her toothbrushes to chew on.
Try an electric toothbrush.
If your child isn’t good at spitting out, use a non-flouride toothpaste.
If your child won’t use toothpaste, back off and just use water. Try toothpaste again later.
If there is a procedure that you think would be too hard for your child to handle, see if it can be put off, or even skipped (like braces, if the child can get along without them).
Your child may need to be sedated, even for cleanings. Be sure your dentist is experienced and comfortable with sedating a child.

Therapies…

Try to make it as much of a game as possible. Most therapists do this.
If your child is young, see if you can arrange for the therapists to come to your house.
Talk to other parents about therapies for children with your child’s disability. See what they think works.
Do something special after therapy (lunch out, a trip to the park, a special book, etc.)
If your child likes a particular activity, try to work it into as many of his/her therapies as possible. Let the therapists know what your child likes.
Participate in therapy if it helps your child stay with it. Check her/his mood to see if you should join in or stay on the sidelines.
If a therapist doesn’t seem to “click” with your child, ask if there is someone else you can see. Most therapists will not be offended – they want what’s best for your child.
It is very hard to convince a teenager to go to therapy!

In the hospital…

If you know your child may need outpatient procedures or hospitalization, try to create a plan ahead of time to care for the rest of the family (relatives, friends, church members whom you can rely on).
Sometimes, you have to take turns being with your child and being home with the family.

Puberty and dating…

Puberty often throws everything off – medications, coping skills, etc.
Spell out the new rules – hygiene, personal space, appropriate touching, social rules.
Just as with any child, answer your child’s questions as best you can, in a way they can understand.

School stuff…

(preschool)

Your child is eligible for Special Ed in the school system as soon as they turn 3 (even if it is in the middle of the year). Be sure you begin laying the groundwork for moving into the school system well before your child turns 3, or there might be a period when she/he is without services.
Find a teacher who has “been there” or at least is willing to try what you suggest.
Go for full inclusion if you feel it is appropriate for your child.
Know what is available for your child and ask for the services that are appropriate.
If your child has behavioral issues, know up front how they will be handled. Will they call you? Do they have behavioral specialists that know how to work with your child?

(elementary school)

Try to have your child go to the neighborhood school unless there is another school that is better at providing a good education for children with your child’s disability.
Make sure that you agree with your child’s placement – that you feel your child is in the right kind of classroom.
Know the teachers, know your principal, and know who to call when you need to.
Learn all you can about school and your child’s disability so you can make suggestions to the teacher(s).
Try to find another child who will be a friend for your child.
Help the teacher(s) recognize your child’s gifts rather than focusing on what she/he cannot do.
Share your hopes and dreams for your child. Keep a portfolio of his/her work with a current picture on the front of it.
Volunteer in your child’s classroom or somewhere else in the school. It gets you brownie points! The school will see you as a valuable resource and not a constant source of trouble. You can learn a lot about how a school works by being there.
Mentor a child in your child’s classroom.

(middle school)

Be on the alert for bullying and social isolation. Act quickly with teachers, counselors and administration before it can become a big problem.
Continue to volunteer, even if your child doesn’t want to see your face. There are places to help where you won’t run into each other!
Teach, teach, teach about your child. Offer to help out in any way you can.
There may not be as much specialized attention paid to your child, especially if she/he is included in some regular classes. Many children with disabilities can fall through the cracks.
It is not too early to start thinking about transition issues and making sure transition plans are documented in your child’s IEP.

(high school)

Your child’s special gifts can shine. Help staff be aware of them.
Find ways to help your child be involved in extracurricular activities.
You probably can’t help out in the classroom, but you can help in the office, the library, the computer lab, etc.
Be sure you are keeping up with transition planning.

(after high school)

Evaluate your child’s potential for higher education, their special skills and gifts, and their ability to manage on their own (don’t underestimate) and help them have a future doing something they really like to do.
Make sure your child has “life” skills.
Start early finding resources that will help your child.
Know about group home resources (if it is applicable) and financial planning.
Join an advocacy group that speaks and works for adults for disabilities. Numbers make stronger voices.

(general)

Be knowledgeable about Special Education Law and how it applies to your child.
Know what “Least Restrictive Environment” means for your child.
Don’t hide anything about your child. Be open and don’t beat around the bush.
Communicate, communicate!
Disagreements are OK. Your job is to educate, create a vision and be part of a collaborative plan to get your child what he/she needs.
Don’t “blame”, - instead, ask for help. People respond more readily to pleas for help than they do to demands.
Try to figure out a way to convince them they are saving money!
Make copies of IEP forms – they fade over time and are not legible.
Try to be complimentary and positive. It’s hard when you are frustrated, but once teachers and staff get defensive, all may be lost for that meeting.
If you sense a meeting is not going to turn out well, ask politely if you can adjourn for now and reconvene at a later time.
If you find something or someone that works with your child (a friend, a parapro, an accommodation), stick with it. It’s not unreasonable to ask that your child's friend be in your child’s class or even to have a parapro move up with your child.
Don’t sweat small stuff. Pick your battles and let things ride when you can. It makes you look much more reasonable.
Attempt to connect and make allies and friends in the school, but stand firm if you need to on what you want and expect for your child.
Ask tough questions. Have data and facts ready to back you up.
You may want to take another support person to a meeting. Be sure you have discussed your game plan and the goals you have for the meeting.
Don’t be afraid to have a long meeting or more than one if that’s what it takes.
Get commitments of resources and services in writing.
Wait 24 hours before you fire off an angry letter.
Have a binder with all the material you might need to have at an IEP. Put a picture of your child on the front of it to remind the school folks who you are talking about. They may have had so many meetings that day that they need a reminder – it’s not always their fault!
Use a tape recorder to back up your memory of what is said. Explain ahead of time that you are going to tape record. It is your right.

Life in the real world…

(out and about)

If there is a scene, smile and walk away. Give your child a kiss, and keep on going.
If you feel an apology is needed, apologize.
If your child has no fear of strangers, make sure you teach her/him “the rules”, even if it’s stuff you don’t ordinarily have to teach children
Be open and up front about your child’s disability.
If your child doesn’t handle outings well right now, wait until later.

(eating)

If your child has food preferences or restrictions, be sure you can get what you need where you are going, or (better yet) bring food along.
Stay informed about the possible effects of foods or medicines on your child.
Be flexible about meals.
If you have to stick to a limited number of foods because of your child’s abilities or preferences, let go of the ideas of “good nutrition” and do your best within the few foods your child can/will eat.
If your child has food issues, keep favorite foods available at all times; keep snacks available when you are out.
Choose your battles. Don’t waste energy on something that won’t matter ten years from now.

(bathing)

Make it as fun as you can.
If your child doesn’t like it, make it as fast as you can.

(bedtime/sleeping)

Make a routine.
Read every night, if possible.
If your child has trouble with sleeping, ask your doctor about sleeping aids.

(friends)

Be open about your child’s disability so that other people will be more comfortable.
Have play dates at your house if your child is more comfortable in her/his own surroundings.
Do what you can to foster friendships, but don’t force it.
If your child is social, do as many social things as you can.
If your child finds a good friend, cherish them.
Limit your visits to people who truly accept your child.

(parties)

Don’t take it personally if your child isn’t invited to many. People may not know him/her well enough to be comfortable.
If it’s appropriate, offer to stay and help out (but don’t hover over your child). The party-giver might be more comfortable about your child if you are there.
Listen to you child. If she/he doesn’t like parties, forget it.
Don’t be hesitant to leave if you need to.
If your child wants to be there, but doesn’t want to be with others, that’s OK.

(holidays)

Consider just staying home sometimes.
Allow for downtime.
Find a quiet area so your child has a retreat.
If you can, stick to visiting in familiar places.

(traveling)

Bring food and toys that are comforting and familiar.
Don’t drive too long.
Be well-rested before you start.

What about the rest of the family…

Have your typical children participate in a sport, an extracurricular activity, Scouts, etc., and be sure you are there to watch or help out.
Look into respite for your child so you can spend one-on-one time with your spouse or other children
Relish and celebrate the accomplishments of everyone in the family.
Try to spend “alone” time with each child each day. Give them hugs and kisses and tell them how much you love them just for being them.
Have a special thing you do with each child (reading to them, having them read to you, a special “girls’ day, “date nights” with older kids, etc.)
If people seem to focus only on the child with a disability, redirect the conversation to special things occurring with your other children.
If both parents can’t do special things with the other children, make sure one does.

Taking care of yourself…

Make it a priority to schedule some time that is just yours once a week/ once a day.
Join an online group for parents of children with disabilities
Join a real-time support group for parents. Many of them allow you to bring your child.
Take advantage of outings offered by the parents’ groups.
Have a glass of wine and check your email after everyone is in bed.
Have an evening with your spouse once a month and an evening with friends once a month.
Bubblebaths!
If you can’t get out a lot, keep up with family and friends via email.
Don't neglect your health! Make sure you go to all your doctor and dental appointments and that you have all the tests you are supposed to have.
Don’t short-change your rest and healthy eating.
Trade out with friends for massages and facials.
Put yourself in the hands of a Higher Power

Finally…

Your child is a person just like other people. Expect the best of him/her. Expect that he/she will be treated like a person always.
Play it by ear – life is often messy!
It’s OK to need help. Ask for it.
Love who your child is.



	HIGHLIGHTS There is an energy in us which makes things happen when the paths of other persons touch ours. from the Monks of Weston Priory