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!!!
Turns out in some ways it's a lot like how other kids do:
I've been working with our local YMCA to start some classes there for kids with special needs. We started the first one this month, a special-needs dance class - although I think of it more as a dance party. It's deliberately very unstructured: I play music, provide colorful scarves for the kids to play with, and we let them go. So far, all the kids seem to be having a great time. Some move by themselves to the music, some run around the room chasing each other, some find other ways to play with each other. A few moms have reported that their kids sleep REALLY well after the class.
Today there were only three kids there. A few, including my daughter, had colds so stayed home. The three who were there ran around with each other, tried out dance steps and played games that they made up.
I was talking with one of the moms. She told me that her little boy - let's call him Sam - was very very persistent about learning to do things he wanted to do, like walking, running, and most recently jumping up and down. But there were some things he just wasn't interested in. Stacking blocks was one. At school, when the teachers worked with him to stack blocks, he would tolerate it but made it clear that he really didn't like it, she told me.
A little while later, we watched as he enthusiastically helped a little girl to stack the pile of yoga blocks she had found on a shelf in the room, into a big tower.
The scene just reinforced for me what I've been thinking about my daughter's therapies and education. She's currently in a special-ed preschool, but is scheduled to move on to kindergarten next year. I'm keeping an open mind, and I'm going to go visit the school in question but I don't think I'm going to send her. I've written elsewhere about some of the problems I see with traditional education. Much of this hasn't been an issue for her yet because of her level of development. So far, being in school has only helped her. When she first started, we noticed a tremendous burst in awareness, alertness and interaction with others. I think some of it was just because she was being stimulated by a new environment and new challenges, but I also think a lot of it was being around other kids her size.
Over the past year though, she has started to be a lot more independent - or, to want to be more independent. She doesn't like having to do what her therapists want her to do, or to sit in a chair in school when she doesn't want to - she doesn't like all of the things that I would never subject her typical brother, or any typical child, to. But she's different, she needs extra help. So what do I do?
The answer is that I'm not entirely sure. I'm not going to abandon her therapies altogether, and I am going to make sure she's in an environment with other kids and with some kind of routine and structure. But I'm pretty sure that the standard "special-ed" track is not what I want for her. I want her to learn to interact in the world and with people, not to do math problems on a piece of paper, or "follow instructions." I'm also pretty sure that she is going to learn as much, if not more, from her peers as she will from any teachers or therapists - just like most kids do.
So for now, we're working with some professionals to design a mode of therapy around her specific needs. And I'm going to be setting up more special-needs classes at the YMCA. I'm also making plans for a special-needs playgroup to meet at our home. The idea will be similar to the dance class at the Y: Very little structure, just lots of tools and an environment where the kids can work and play with each other and learn from each other. I'll be posting more about all of this in the coming weeks.
Our daughter suffers from seizures, and we are considering trying cannabinoids to get them under control. We are currently trying the ketogenic diet, and hope that works. But if it doesn't, medical MJ is our next step. So today I called to get an appointment with a doctor who can prescribe it for us, so we'll have the prescription if and when we need it.
It was a weird process. Our own doctor cannot prescribe cannabinoids. Apparently it's a whole "thing" and not every doctor wants to be in the position of prescribing medical marijuana. I can understand why. So we had to find a doctor who could prescribe it for us. Our own doctor didn't know of anyone, but had a patient who was trying it and after getting permission, gave us her number to call.
I spoke with the mom, who has been using a cannabinoid oil with her severely disabled son for a few months now. This family is not using Charlotte's Web, but they are on a waiting list to get some ("talk to Ray, at Realmofcaring.com", she advised me.) I asked her what strain she was using, and she said that there was no name for it, but that it was high in CBD, which is thought to be good for seizure control. Dosage guidelines haven't really been determined, so they are just "winging it."
She told me that they saw some decrease in seizures, as well as a faster recovery from seizures when they do happen, but just as important, they've seen a dramatic improvement in his mood. He is now doing things he hadn't done in a long time, if at all: Laughing, smiling, making more eye contact, making an effort to get up. She told me that her son used to grind his teeth a lot, and that that has stopped. He is happier, she says.
It's good to hear this kind of report. There are clinical trials of cannabinoids going on now, but for now what we have to go on is mostly anecdotal, and mostly positive. I hope the diet works and we never even have to try it. But if we do, we'll have the proper ridiculous piece of paper giving us permission to do so.
Oh, and in case I haven't made it clear elsewhere: F*** the war on drugs and F*** the state.
This is disgusting. Please sign her petition. Says mother Jenn McNary:
It is taking too long…
I was a mother of two dying children, Max and Austin. Now I am a mother of a dying child, Austin. Both of my boys have Duchenne Muscular Dystrophy but Max has been receiving Eteplirsen for the past 2.5 years and continues to get stronger each day. Your past support has been immeasurable and I am so thankful for it. There is no denying that your support has made a tremendous impact. However as a mother of a dying child – there is no such thing as steps forward or progress. I can only measure success in one way. Austin getting Eteplirsen. Every day that passes – every day that he gets weaker – every time I see him struggle to feed himself - I know that I have failed him. It is simply taking too long. From experience, I can tell you it is exponentially worse to be a mother of a dying child that you know you can save than being the mother of two dying children. This is torture.
I want the needless torture to end. I want the laws that we have created to be implemented. I want the White House to hear this story so that no one has to watch a loved one die when there is a viable treatment available. Simply, I do not want anyone to have to go through this again. Please support me – support Austin – support every child with DMD – support access to life saving treatments for our loved ones for any disease. Let’s not fail them anymore.
The Obama Administration has promised an official response if we’re able to get 100,000 signatures by March 29, and we're already a third of the way there. Click here to log-on to the White House petition site
and sign the petition.
I want to be the mother of no dying children.
Thank you so much for your support.
Jenn McNary/ Austin’s Mom
(And no, the petition is not about abolishing the FDA - although it should be - but it might help this family.)
I know this doesn't look like much, but it took me several days (complete with their usual interruptions - see Harrison Bergeron for details) to accomplish. I'll post the "after" pictures first:
So here's what it looked like before:
Of course there's other stuff you can't see in the photos, but these pretty much show the difference between my daughter's organized but overly full space and her new, uncluttered one. It may not seem like much of a difference but the effect is actually huge. The whole room feels different to me now and I'm sure it does to her too. There is a chance now that she will be able to see and understand where things go, but more importantly she is not going to be overwhelmed by the visual stimulus in her environment.
According to WeAreChange:
A small organic farm in Arlington, Texas, was the target of a massive police action last week that included aerial surveillance, a SWAT raid and a 10-hour search. Members of the local police raiding party had a search warrant for marijuana plants, which they failed to find at the Garden of Eden farm.
But farm owners and residents who live on the property told a Dallas-Ft. Worth NBC station that the real reason for the law enforcement exercise appears to have been code enforcement. The police seized “17 blackberry bushes, 15 okra plants, 14 tomatillo plants … native grasses and sunflowers,” after holding residents inside at GUNpoint for at least a half-hour, property owner Shellie Smith said in a statement. The raid lasted about 10 hours, she said.
Local authorities had cited the Garden of Eden in recent weeks for code violations, including “grass that was too tall, bushes growing too close to the street, a couch and piano in the yard, chopped wood that was not properly stacked, a piece of siding that was missing from the side of the house, and generally unclean premises,” Smith’s statement said. She said the police didn’t produce a warrant until two hours after the raid began, and officers shielded their name tags so they couldn’t be identified.
Thank God we have the monopoly state to protect us against aggressors.
"I look upon an increase in the power of the State with greatest fear, because although while apparently doing good by minimizing exploitation, it does the greatest harm to mankind by destroying individuality which lies at the root of all progress. The State represents violence in a concentrated and organized form. The individual has a soul, but as the State is a soulless machine, it can never be weaned from violence to which it owes its very existence. What I disapprove of is an organization based on force which a State is. Voluntary organization there must be."
-- Mahatma Mohandas K. Gandhi, The Modern Review, 1935, P.412
OK, there's a little bit left out here - like why Germany cared whether France might be looking at it, and whether Serbia really just "accidentally" spilled Austria's drink. But parts of this will make you spill your own drink out your nose, and the ending is spot on.