Last week, I asked parents of older Dup15Q children the following question:
Looking back, what would you have done differently re: therapies, education, etc.? What would you do less of, more of, not at all, what do you wish you had done? What are the things you are most glad that you did for your child early on?
I got a ton of responses, and am reposting them here. I've tried to put them into categories, but of course there is some inevitable overlap. I've also changed any names mentioned, to protect privacy, and I have not corrected for spelling and grammar. I hope this is helpful:
Stress less and enjoy the little things focus less on what you can't change and appreciate what you can change your outlook on perfection! In my eyes my daughter is perfect!
Our daughter is now 21 and still doesn't have peer friends although she is very sociable. She loves older adults and I guess I'm still hoping she will develop friends so she is not alone when we are gone. Thankfully we have two older sibs who will watch out for her. Math is simply not an ability she can develop so we don't hold out hope there. She is a reasonably strong reader ( about 3rd grade level) so we try to reinforce that. Stranger awareness and animal safety are two other areas where we have had little success so would stress that early on..thanks for the great question
I would have started (toilet training) about 6. He was trained at 8. Empathy? Not even my husband can manage that so Albert is a real challenge in this area. If I am really mad, Albert sometimes says ''very very angry". Glad we did reading. Math is not a possibility. Music is a big yes. He does not pick up from those around him but can learn in an ABA format, though not til he was about 13. One to one and hand over hand works best for him. He is 27 now and his speech is still improving bit by bit. Our kids are all different but I just wanted to let you know what worked/did not work for us.
I agree (about waiting to start) the toilet training. I'm glad I have not allowed his disability to define him as a person, nor us as a family. Dup15Q is just one very small part of who we are.
We love her for who she is and she loves back unconditionally, which is such a gift! I wish we had had a diagnosis sooner, but it just didn't exist. I am grateful for everyone in her life that either just accepts her for her or tries to understand what her differences are. I cried a couple years ago when I found out about this group and actually talked to parents who had children like mine. I know this is wordy, but I hope is helps in some small way.
I am really glad we treated Cindy, 21 as normal as possible. She had responsibilities just like my other two girls. She has chores. I did not give up on academics as soon as teachers wanted to and I probably should have. She did not progress with writing and math especially after she was about seventh grade. She still loves to be read to but never learned to read herself. I wish I would have done more puberty/sex education stuff. I learned of good programs after she turned 18 and they don't work with adults. Still searching for that.
Therapies. Really wish they were as available then as now. We had Portage that finished when nursery started. I took Rose to special need and typical toddler groups. Looking back they were more of Q&A sessions to satisfy other peoples curiosity. Same with the endless appointments with health professionals who also wanted to gawp and ask questions. I would have liked to have fallen in sooner the professionals weren't offering any 'cure' would have stopped working full time if l had truly known what the big picture was for Rose. As you all know, idic is so rare that no one had seen anyone like her. I was led to believe she would be verbal but a late talker. Epilepsy killed her pre verbal skills. I listened to various friends and family telling me she was OK. That was based on how she looked. I wouldn't mind seeing that mild mannered sweet trusting Sandy again. She was quite popular with lots of friends....oh how times have changed!
That is a tricky one because as you all know we stumble through half of our days /weeks due to exhaustion and stress ....i am really glad though that i persevered in taking adam to as many places as possible to interact or observe interaction ,sometimes it was a nightmare but as he got older it became easier....i took him swimmimg most days in his early life as part of his therapy ,i believe this helped to strenghten his muscles without pain or anguish .I ensured he had spacial needs swimmomg lessons ,he swims like a fish now .His education was difficult as he is 16 now and still cannot read a book ,he can write his name but that is about it and i spent hours trying to get him to look at books ,colour and paint but he hated it .Looking back Peter would only do what he was happy to do and it would seem for a reason as it would appear that part was not going to change. He loves playing basketball ....indroduce your child to as many things as possible and when they find something they enjoy go with it . have lots of people around you and your child ,try not to focus all your energy on them save some for yourself cos you are gonna need it lol ......its a journey but we have lots of laughs the odd tantrum and thats just me but just dont forget to love and live your life x
TYPES OF THERAPY:
Our daughter is 4 1/2...saw a lot of core strength develop during aquatic therapy. We also feel hippo therapy continued with her core to help muscles for potty training. She loves music, would love to try a music class next! We try to find 'therapies' that don't 'feel' like therapies! Bottom line, I think developing 'friendships' ultimately helps in 'all' areas!!!
I'm glad we did music therapy. I'm not sure that hippo therapy mattered much. I'm both glad we did speech therapy and glad we recognized when it was time to stop. Mostly I'm glad that as soon as Alison started to enjoy her relationships with the peers in her class (freshman year of high school) we made friendships the focus of her IEP.
Music and music therapy have been great. We let her have routines, but do try to keep her flexible as much as possible. Wish I would have gone gluten free sooner, and she is only 5! I learn more everyday and really appreciate anyone and everyone's tricks or suggestions!
I would teach life skills earlier. Being accepted and having friends is so important. ; Don't underestimate what they know; start to let go early, involve them in camps, and most any activity is available somewhere in an adapted special needs format; they have abilities, step back and stop doing everything for them, they will surprise you; and I would have asked for more assistive tech stuff earlier in IEP process. Very few people are trained in assistive tech, laws are vague, there's so much out there
Special school would have been better from 7,not 10. Being told he had a BENIGN chromo duplication at 6,we had to wait until he was 19,before being told,it was NOT Benign,but the cause of all his difficulties. Should have seen that he was having absences for years,before realising that he was not Off With The Fairies,but having absences. Epilepsy kicked in at 20-what a shock! Glad he had access to SALT,PT and OT from 3 years old.
I'm really glad we sent Cassie to public school! The best decision ever!! (re: special-ed or mainstream) it's both. She is mainstreamed through out the day but works with SPED all day long.
Joanna was in a special education program from 7th grade on at the high school. Small town--little choice. She did not learn too much there but loved school.
I wish we would have not started toilet training at three and had waited longer. I wish I had spent less time an academics during the younger years. I'm glad I found some activities that Robbie and I both enjoy, ABA and music therapy were helpful. I'm glad Robbie had on opportunity to attend a special needs school when our district couldn't handle his behaviors at puberty. I'm glad we spent the last few years working on a transition program from high school.
I have been thinking of how to answer this question since yesterday, hoping that whatever I say will be helpful...so here goes. Rosanna is 32. She was not diagnosed with Dup15 until she was 25. Until that time, we dealt with developmental delays, "mental retardation" (their words, not mine), autism and attention deficits. She went to public school, repeated kindergarten, was in special ed from the 1st grade through high school, was mainstreamed for some classes, and attended a skills program after high school graduation for two years. The school experience was a mixed bag and Rosanna was left with a lot of unpleasant memories, Her father and I went through a separation and divorce during her school years and I think that did not help her emotionally at all. She has issues with math, money, and telling time (she can read a digital clock and knows what time it is, but cannot grasp the concept of a face clock or hours, minutes, etc.) Forget Roman numerals!!! She does read, although during a parent/teacher conference, a careless teacher told me she would never read and she overheard that and was very angry! She is fairly high functioning as far as hygiene and likes to do her own laundry. Her room is often messy and we negotiate that chore often, but she is open to negotiation. I think she could have been an attorney in a different life, she is quite formidable! Seizures started at age 13 at onset of menstruation. Before that, if she had seizures or absences, we didn't realize it.
MEDICAL ISSUES AND DIET, ETC:
I didn't even know Samuel had the Dup until over a year after the seizures started at 17, so he was 18 before the Dup was even known. His HFA was his "definition", basically. Dealing with autism/delays was our main concern, and he was high functioning, so it wasn't a huge concern, he was on a good path. Now that the seizures have taken center stage, I wish I had been better prepared for them, knowing that they could wreak havoc if not caught early. Diet has played a major part is giving him back a better life. I wish I had concentrated more on "preventative diet". I think they will find that this plays a major role in all aspects. Specifically, gluten free, some dairy free, some soy free, LGID, ketogenic, and MAD diets.
SOCIALIZATION AND SOCIAL LIFE:
I'm glad I had a bunch of other kids for him to identify with, mimic, learn from, protect him, and will hopefully take him in after I'm gone xo
Not sure if this helps, but for Stephen I distinguished between 'ladies' and 'friends'. Bear with me ... 'Ladies' were therapists/doctors-people he had to participate with, 'friends' are people he must be polite to (hi/goodbye/thank you) but does not need to stay on task with.....I have done that from 6 weeks old when the 'lady' came for therapy (pt/OT/speech) all the way thru. It helped with the bag of tricks. Participation was mandatory....still is! Yet he got praise and usually a sticker or hand stamp for participating. I'm glad Stephen is treated as just one of the kids....I have great kids who expect Stephen to behave appropriately, yet give him space when he needs it.
Plan breaks in social settings. Teach him to ask for a break.
Timothy attends preschool in the mornings on weekdays. He is receiving therapy there as well and loves school in general. The situations he struggles with are large crowds, going out to eat, etc. Most of the time it's with family (grandparents, aunts and uncles, etc). My kids are the youngest in the family and the rest are 8 and older. None of the family gatherings are set up to accommodate children this young. They're usually large gatherings and Timothy doesn't have the vocabulary to let others know that he needs space. I want him to be treated like just one of the kids as well. That's how how he's treated at school (with extra attention) but family just doesn't get it. Hope that makes sense...
One thing that i really stress with Kevin who is 9, is politeness he isn't allowed to demand things... I do this because it will be hard enough dealing with his behaviors when he is a teen but my hopes are that these behaviors will be easier on his helpers if he is polite. There has already been some positive feedback... Oh also teaching him to be a good sport. How? Modeling when he asks for something i'd hold it in my hand and repeat " may i please have a cookie" then i would put it in his hand but not let go until he would say thank you. He also gets extra "stars" from his service providers if he is polite... He probably won’t understand empathy but if he is rude or demanding ill explain to him how that makes someone feel. All his providers including at school know that this is extremely important to me so they help
Use visual cues to teach politeness and manners. This is one of those abstract concepts that we need to make CONCRETE so our children understand them.
Socially, she misses so many cues and it would be hard and honestly, dangerous for her to live on her own. She loves people, but doesn't have many friends. Not because she can't be a friend, but because it is hard to find young people her age to socialize with. She thinks she would like a boyfriend, and to be married, and have children, so we often talk about the reality of that. That is hard for her, harder for me, but she is so optimistic. She is a loving young lady, with an emotional range of 7 to 14 years old. She volunteers at a daycare at a local community college, can take the handicapped van around town, if she wants. She is thinking of volunteering at the Humane Society. She would love to have a service dog and has a notebook on the subject, but has gotten discouraged because she does realize it is expensive.
HOW OUR KIDS LEARN BEST:
He learns more from observation, at his own pace, than being forced through teaching, when it comes to social skills. He's learned more from you-tube about Autism since he's been out of school than he ever got taught in high school....he asks me non- stop questions about it....
Giselle also learns more by watching other people. I don't stress over the small stuff but would go to hell and back to fight for what she needs. For someone who needs routine and 'sameness' she is so unpredictable with her responses. My 'Mary Poppins' bag of tricks always comes in useful. Lots of distraction techniques work well most of the time. Colourful.....yes that the word. Our life with Giselle is colourful!!!