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Advice for Downs/ADHD brother (Long)
My brother, Jackson, is 10 years old. He is the 5th of 5 children (including me) in our family. We love him more than words can express.
Jackson has Downs syndrome and has also been diagnosed with ADHD. Like all Downs people, he is VERY stubborn. He is mentally compared to about a 5 year old. He can spell his name, but cannot write it. He can read a little bit, but his speech is extremely hard to understand. It is very difficult for him to communicate his needs to us and for that reason it is frustrating for him and us.
Physically Jackson is very
exhausting. What I mean by that is that Jackson has more energy than
ANYONE I know. LITERALLY. He is VERY strong. So strong that my dad, who
is 6'4 260 lb farmer, has a hard time holding him back when he has his
mind set on something. For example, holding him down (for something like
a haircut- which he HATES) is impossible so my mother cuts his hair
while he sleeps. He also is a incredibly fast runner. He can run faster
than my sister who is a gymnast, or my mom, who is not a runner, but
physically fit.
Jackson has fear of danger or in other words has to be watched EVERY SECOND. He has an incredibly high pain tolerance- one time he shut a door on his hand and didn't even flinch. He would walk out into a busy street, without thinking about it, or grab a log out of a bonfire without a second thought.
His attention span due to the ADHD is super short. And there is no relaxing when he is around.
Ok
hopefully you have enough background information now. I am just writing
for advice or input (medically or other) for my parents who are run
completely ragged and physically exhausted. They NEVER get time for
themselves, even a half an hour. They RARELY get to go to b-day parties,
potlucks or anything that seems like a normal fun outing for anyone
else. They have both had to cut back on work, because 1) someone has to
be with Jack at all times and 2) because if they make as much money as
they used to make (which is a modest amount) Jack will not qualify for
certain state programs that my parents cannot afford themselves. Jackson
wakes at 5AM every morning and goes to bed at 8pm every night. After
that, there's always hours of housework to do, 2 other children to
attend to (there's 5 of us but me and my brother are on our own now),
among many many other things.
I am so impressed with my parents, they are SO good with him. But
like I said, there is no relief. My mom, who is a RN is sure that he
receives the BEST medical care, and has tried over 40 ADHD meds on him
(through his doctor) to try to sedate him if even just a tiny bit. The
meds either have terrible side effects or don't work at all. Also, he
cannot swallow a pill, so that eliminates many options.
Jackson qualifies for some great state programs, including
respite care and having a full time PCA. However we have had MANY PCA's,
and after finding out how much work Jackson is they quit almost
immediately. My parents live in a rual area (3 hours from Minneapolis- where I live)
which doesn't help things at all because there aren't many PCA's or
respite care to choose from.
We feel very blessed because Jackson was born into our family and not a family that would neglect him or abuse him. We just need some relief. Is there anything we are missing? New ideas to try? Or even ideas as to how to keep the PCA's that get scared off by him. They get paid very well (for a PCA) around $12-$13 starting pay, plus my parents pay out of their own pocket for gas for the PCA to take Jack to the YMCA every day or some other physically activity.
Thanks in advance
Re: Advice for Downs/ADHD brother (Long)
He needs resources and fast.
What kind of help is he getting now -- from a social worker, from the school system, from counselors?
Is he in school at all? If anything, he can benefit from speech therapy.
There has to be some type of school he should be in; he is 10 -- and he should be in a school that's suitable for him.
He may also need to be reevaluated --- there's got to be some type of meds that are beneficial to him. (Maybe the mix of meds is contributing to his unruliness)
Start with your child study team first; then go from there. Good luck.
He is in school full time. 20% in the regular classroom and 80% in special ed room. He's home at 3pm each day and all weekends.
He regularily sees a speech therapist in school, he sees a social worker, a dr that deals with only downs kids, psyciatrist, ENT (for ear problems), among others. My parents drive him 3 hours one way (to Minneapolis St Paul where I live) for his appointments specifically so he has the best available.
Sorry there's so many details you needed to know to give input that I left that out.
My nephew has a severe form of autism and ADHD. He is 10 years old with the mind set of a four year old. He is extremely strong and is the same height as his mom. He also does not realize dangerous situations or pain either.
My sister got involved with a social worker from her state who helped her with a ton of things to assist her in his care. One of the big ones being respite care. My nephew is such a sweetie, but he can be a lot to handle. The social worker was able to find respite care workers who specialized in children with his needs. Just a regular PCA or respite care doesn't usually cut it when it comes to children with special needs. It can take a while to find the right care worker, but once you do, it is amazing. My sister is able to have someone help her out and she can go do certain things without constantly worrying about my nephew. I would get in touch with a social worker asap. Best of luck!
It sounds like your parents are in need of a more involved caseworker/social service agent. I grew up babysitting for a young man who was only 2 years younger than me but has downs syndrome as well. He was sometimes tough to handle just with the Downs alone - I can't imagine adding ADHD on to that. The family I babysat for got regular respite care, great family counseling, care attendants who worked on his social learning as well as academic, etc. Now that the young man I babysat is an adult, he lives in a fantastic group home with 3 other young men his same age and level of functioning and it has been a wonderful transition for him and he's very happy. I know that is a ways off for your brother but I do believe that it can work out well in some cases! I haven't ever had to research a PCA but is it possible to get more than one so they're working with him 1 or 2 days a week?
Is he involved in athletics or anything like that (Special Olympics is HUGE in MN and there are chapters all over the state)? That could help him burn off some energy in a positive way too. Just a thought!
MN has typically been very good about providing assistance for families with special needs children but I do recall that some major funding for assistance programs was cut this last year due to the budget shortfalls and sadly, that may play into the scenario for finding a good social worker or care provider.
Good luck!
Are your parents involved with the advisory committee in their district? There should also be a developmental disability division they can also call. Keep in mind that there is a high co-morbity rate with kids who have Down Syndrome and autism as well. I have a child with Global Developmental Delays, one with autism and learning disabilities, and a 3rd with a 16p11.2 duplication and autism. I am right there with them with being tired and needing a break at times.
Perhaps there is a level of sensory needs with him? When one of my boys who is sensory seeker is bouncing I have him jumping on a pillow or a trampoline. I give him something called "heavy work" and that helps tire him out. He is still not sleeping through the night which is frustrating on my end.
There should also be a Down Syndrome chapter for support in your area. I would also suggest contact them for suggestions.
I would also contact the insurance companies. They can provide a case manager to help with the doctors.
I'm sorry I can't offer much help as far as social workers, etc. but your story just hits home, almost to a tee, so I had to comment. I have a brother who is now almost 20 with Epilepsy/Autism and has been able to physically overpower my dad who is also a large guy for years now. We have had many incidents where he saw something that he wanted (like Taco Bell!) and put himself in danger by crossing roads, or taking off, or even grabbing the steering wheel! Unfortunately there just insn't any way for him to safely go out in public anymore. But he also has a high tolerance for pain. My dad and stepmom are also very rarely aloud the opportunity to get out of the house and do anything together. The main difference here though, is that I truly do not believe my brother has any capacity to learn or gain from a school setting. WE adapt to him. So I don't mean to be discouraging, there is a clear difference.
I know my parents really appreciate that when I'm home I always try to make sure they get at least one night to go out and I stay home with my brother. There are so few people who are comfortable and able to stay with him that they just appreciate the occasional date night. Something that also helps them is that they work opposite shifts, one on days and one on nights.
Parents of children with special needs make such sacrifices, and I respect them so much. I also know first hand what it's like to be a sibling and be one of about 3 people to be able to "babysit" for years, and to be away and wish you could be there to help more. Kudos to you and your family!
I have an uncle who is mentally handicapped due to an accident at birth. He is in his 50's now.
When he was a teenager, he became too much for my grandparents to physically handle. He was a big kid (still a big man!). He was apparently often really out of control. My G'ma missed my mom's wedding, bc they "couldn't" leave him with anyone and he was out of control if they tried to bring him somewhere like that. (I say couldn't in quotes, bc obv. his issues made it hard to find care, but a lot of it was my g'ma refusing the help that was available). Anyway, crappy situation all around.
They eventually reached a point where they had to have him live in a group home. He started off living there "FT", but my g'ma would pick him up and bring him home quite a bit. Then as she got older, she started only taking him out of the groups home occasionally. They also had to medicate him quite a bit to calm him down- he was 6'2" and over 200 lbs- it was just too dangerous. I dont know what drugs he is on, but now he is able to be in public, visit people, etc, and not dash out into a street, or pick up a grown lady and squeeze her (he tries to give people hugs but he used to hurt people).
Anyway, when my g'ma died, she gave her house to the group home organization. My uncle is able to live in the home he grew up in (with 3 other SN adults). It was very very hard for my g'ma to take that step, but also really necesarry for both her health, and my uncle's.
Another thought.... I know they are building a children's hospice in the TC's. It is for both end of life care, and respite care. I wonder if something like that would be possible. Also, I know even when my uncle lived at home, he used to go to a special sleepaway camp in IA called Camp Courageous. It is for SN children and adults, to give families a break. I don't know if driving to IA would be possible, or if there is something similar in MN.
http://www.campcourageous.org/
I totally get your frustration and your parents. I work with children with autism, and provide in home therapy. The "system" is hard to navigate, but finding help for your brother now is imperative. He is only going to get bigger and stronger. I would seriously look into behavioral therapy/ABA. It is most commonly used in children with autism, but is effective for any child with behavioral issues. I have had clients with downs syndrome and they have really excelled. They can set up contingencies so that good behavior is rewarded and can help increase impulse control.
I STRONGLY disagree with an earlier poster that mentioned that their brother with autism had no capacity to learn. Perhaps not in a typical setting, but all children have a capacity to learn. If the public school system is failing a child with special needs then they are not doing their job.
TTC since Feb 2012
Diagnosed with PCOS and anovulation
2 round clomid 1 round femara--no response
1st round injectables/IUI 1/31---BFP!
Well, I hope that is the case, but I've been one in few people providing him care for 20 years now so I think I have a better grasp on the situation than yourself. I would love to think he could, but it's hard to teach someone anything if they have no ability to communicate. He hasn't spoken for probably 15 years and wasn't able to learn signing or other techniques that have helped other autistic kids. Feel free to PM me if you think you have some info I should know b/c I don't want to distract from what OP is looking for here.
This. Support groups, local agencies and non-local. You'd be surprised how many resources are out there. Ask around and you should be able to find something.
Shelby adopted after 9 months!
Sorry for the response, but as someone with a sister with Down syndrome, I have a bit of experience. Have your parents looked into a local advocacy/support group? I'm not in the MN area, but I am very familiar with the national organizations and can certainly do some research and help them locate a group. They should also be more assertive with their case manager and more insistent with the PCAs. It is not normal that they quit right away, they have training to handle children like your brother and it shouldn't be an issue. I agree with the Special Olympics suggestion, they have some awesome (and free) programs where your brother could release some energy. What about mental stimulation through board games or puzzles? Most people don't realize that those require as much energy as running around. I know that he has ADHD, but with as many puzzles and games out there these days surely something can catch his attention.
Good luck with this, happy to help if you have questions!