Monday, April 13, 2009
When: Monday, April 27th
Where: Vestavia Methodist Church
What time: 6:30-8:30 p.m. (speaker starts at 7)
Speaker: Chuck Andrews - Chuck is with Northwestern Mutual. He has an adult brother with Down Syndrome, and is familiar with the need to make sure a permanent source of funding is there to benefit the child after both parents deaths. He also talks about the importance of a letter of intent, and has good handouts. His company is a leader in working with families that have a child with a disability. Chuck spoke last year in a joint presentation with Katherine Barr. We learned a lot from him. Again, this is a meeting that I think all of us need to hear. Hope to see you there!
Call Laura Davis for more information 706-1311
Thursday, March 19, 2009
Questions & Answers from
New Parent’s Meeting 3/23/09
Post Your ANSWERS to these questions & New QUESTIONS below!!!
1. Q: How do you deal with allocating time for each of your children? How do some other parents insure that they spend quality and ample time with each of their typical children?
A. My child with DS does need more caring time. Try to take/make time - set aside for typical child(ren), a parent with other children together or one on one with one child at a time. Special, quality time even if it is not a lot of time is still very valuable and its effects, lasting.
i. Making use of the time when the child with DS is in an activity or in therapy, to do something intentional and focused with your typical child. Transforming their waiting time into quality time with you.
ii. Find a special place that is your typical child’s(ren’s) very own special place – which your child with DS does not go to. Having the place is what is important for this aspect not the frequency that you go there.
iii. Setting bedtime for the typical child to be 30 minutes after their sibling with DS’s bedtime is one idea or having time before your child with DS gets up in the morning.
iv. Sign up for respite afternoon/evening service and use this time for a special outing with your typical child.
2. Q. How about the jealousy that siblings feel for the disproportionate amount of time parents seem to spend with the child with DS?
A. Try to remember family life is cyclical.
B. Parents and siblings need to be reminded that each family member has different needs and varying amounts of time needed at different times in their lives.
C. More often than not when the child with DS is younger the amount of attention time they need can be significantly more than their typical siblings but as they age this tends to even out.
3. Q. Do you feel guilty about time with your child with DS and time not with your typical children? A. You might feel guilty. Life when your child with DS is young will be very different when this same child is older. Communication is a crucial key to explaining, the similarities to an older sibling on how they took more time when they were younger too. Depending on the closeness in ages, a younger sibling may have more similarities than expected to the child with DS because of their developmental delay.
4. Q. How and when do you tell your child w/DS about DS, that they have DS? Visa versa - How and when do you talk to your child typical about DS, that their sibling has DS?
A. Explain it as it arises. Give simple, basic answers, answer only as they inquire. Keep in mind their personality and how they process information.
B. Same answer - Explain it as it arises. Give simple, basic answers, answer as they inquire. Keep in mind their personality and how they process information.
5. Q. Our older child (typical) can now drive. How do you handle child with DS who voices that he/she wants to drive too?
A. Explain; communicate the complexities of driving, the risks and dangers.
B. Child can drive a golf cart if available
C. One parent appointed the child with DS a car – it was “her” car – when they go someplace for her/with her – they drive “her” car.
6. Q. My child has behavior issues and temper tantrums and it is because of these he gets lots of attention, now my typical child is acting out but never before – I it is because of her brother’s behavior. Any feedback or advice?
A. Try not to make a lot of excuses for their behavior or blame the behavior on DS.
B. Keep your family rules consistent – have realistic expectations, flexible methods and creative enforcements for each member – but same rules apply to all.
C. Do Not use the “she/he has DS” card as an excuse
D. Use varying modes of communication. Verbal – Visual - Signs - Actions
E. Siblings delight in the discipline of others. They will see it coming for them as well if your correcting and discipline are consistent.
F. No reward for anyone with bad behavior
G. Discipline – Discipline – Discipline for their entire life
H. Be consistent – patient – and enduring. Your child with DS will get it eventually.
I. Give attention before or after – but not during or because of bad behavior – Try to determine what the child is "asking " for in the temper tantrum. Give it to them after they have calmed down
J. Identify – what the tantrums are about – attempt to pre-empt the undesirable behavior and reward the restraint.
K. “Take away” discipline. Remove the item of their attention/distraction – tell caregivers to use “take away” discipline as well. Permit the item only when they can remain positively engaged.
L. Use humor when applicable.
M. Use more than one mode of communicating discipline and direction.
N. Helpful Read - The Way they Learn by Cynthia Tobias. Her sequel - You Can't Make Me (But I Can Be Persuaded).
O. Explain – why the discipline is being given simply– be patient – don’t give up – same discipline over and over again – it may take time.
7. Q. My son, with Down syndrome will be 6 soon. I feel at times I put too much responsibility on my 4 year old daughter (who acts 6) to help with her brothers. Is this common etc…???
A. Yes this is common and it may be alright. Evaluate how much this child can handle? What is her/his temperament? – Discern if it is your guilt speaking or truly your child being overwhelmed or is this child capable of the added responsibility. It may seem like work to you but could be very enjoyable and like play to them.
B. They are learning by your example that it is a privilege to work together and serve another
C. Keep them included and use positive communication – make work fun and enjoyable. Use “we”. Encouraging language - not lecturing words.
D. Tasks can be made fun – work. Teaches them physical work and responsibility is rewarding.
E. Children believe what you say and learn from your interpretations. If you say “I’d rather play with you but I have to work.” Instead try – “this would be so much fun if we could do “this” together!”
F. I will do this – Can you do that? – then we can do ________ together!
G. You are the parent – it is always appropriate for you to take away a “grown up task” from a sibling that has taken it on with a good heart to “help” if you feel like they have taken too much upon themselves to their detriment.
8. Q. What do you do with your child with DS who reacts to transition not with a tantrum but with allowing their body to go limp, becoming dead weight?
A. Give instruction to get up and take the action you are requesting. Do not force or drag them. Wait with them until they get up - if you can.
B. If in a class – let the students move along. Do not derail class or family for the child with DS. Wait with them, they get the picture that if they want to be included they need to get up and get going.
C. Hold arm up, perpendicular to their body, at wrist. So they will want to stand.
9. Q. My child is playing with their “poopy” what can I do to help him stop? Are there signs when a child with DS is ready for potty training?
A. Wipe with & clean them up with cold water (not icy)
B. Potty Power – DrPotty.com
C. It has been indicated that there are several physiological signs to signal a child's readiness to train, one of them being able to maneuver the stairs (walking up and down) alone safely.
D. Time their body rhythms – regimented visits to the bathroom
10. Q. My 3 yr old daughter with DS and has had 3 set of tubes, has had her adenoids taken out and a tonsillectomy. Still she is constantly sick with sinus infections and ear infections. I have a 10 yr old daughter as well – how do you handle, engage & give attention to the older child when the younger one is ill all the time?
A. Capitalize on the good – healthy days your child has and seize the moment. Quality is lasting and memorable for your other child. Plans are hard to make with a sick child – so have a “healthy day plan” in place so when a good day does happen you’re ready and not just beginning to think about it. The plan doesn’t have to be extravagant – time with you will be extraordinary just because…
B. If it is available to you, engage and accept outside help. Find the quality time you want by finding and allowing someone outside the immediate family to care for your child with DS. Be really honest if someone asks if they can help – be willing to admit that you need help. Safety is an issue in leaving your child with any caregiver – don’t give up looking for the right person.
11. Q. My child will not sleep – what do I do? I am exhausted with no energy left for my other children.
A. Evaluate their bedding and room set up. Did they leave a baby bed (crib) too soon? Can they be returned to it? Can the bed be on the floor? Safety is always primary!
B. Secure their bedroom - provide a night time area – play music.
C. Help them with Self comfort –Take steps to “break” poor bedtime habits. This may take some time (especially if their current schedule and manner has been a long time routine). By introducing a new item(s) and manner – this may become the “new” necessities but because the goal is to be completely in their room, hopefully in their bed it is the appropriate habit for their bedtime or sleeping independence from you.
D. Put a baby gate on the bedroom door.
E. Try letting little sisters/brothers sleep together.
F. Evaluate developmentally where they are? Regiment and schedule – make their routine as consistent as possible.
12. Q. My child with DS flees – how do you make the other children be conscientious about keeping doors closed, locked and not feel like prisoners themselves? Answers Needed