Looking Back....Where We Were and Where We Are Now

[MomOfABunch]

DD is now in 8th grade! For so long, the focus with her was managing her behavior. She's come a long, long way. She's been in a fantastic private placement for 2 years, and finally got meds that work made all the difference in the world.

 

Her 5th grade year, I walked into an IEP meeting and requested residential placement. Her behavior was really that bad. We compromised on a behaviorally focused private placement. We had to regularly restrain her and could not leave her alone in the same room with her little brothers. We had to resort to locking her in her room during tantrums and she often kicked holes in the wall, and through the door. She broke an aide's foot at school. She broke her own collarbone during a tantrum. The dr prescribed a sedative for when her tantrums became unmanageable. Forget academics.

 

Now, she clears the dishes every night at dinner and helps wipe the table, she can pick up and put away things and is learning to vacuum and fold laundry. With she starts a tantrum I can say "go to your room" and she will. She may lay on her bed and kick and yell, but that's ok with me. Then she comes back and says "sorry I scream." She loves art and spent 2 hours yesterday painting with her little brothers...unsupervised while I was working in the basement. She asks to be read to often, listens to the entire story and answers questions! She is learning to copy simple sentences using cowriter. She learned to count quantities to 10 correctly this year. She mastered the pre-primer Dolche list, which she has worked on since like, kindergarten. This year at her IEP the discussion revolved around academic goals and not behavior. She still has a behavior plan, but it is largely maintenance and crisis management, for when old behaviors resurface. I can leave the house with her. Last week I took all 5 kids to the grocery for something I had forgotten, and it was fine.

 

This is what I want to remember instead of focusing on all the things she can't do yet. Will she learn to read? I don't know. Will she ever write her name? I don't know that either. And you know what? Maybe it doesn't matter as much as all these other things do.

[OneStepAtATime]

Your update brought tears to my eyes.  I am so happy that there has been that much progress.  Academics are only really possible if she is functional.  Now maybe she can make progress in academics, too.  Honestly, though, if she is willing and you are, too, she can take whatever time she needs to move forward academically.  Years and years if necessary.  At whatever pace and to whatever level ends up being possible.  Progress in behavior that allows her to truly function, and improves the dynamic within the family, is huge.  Academics just aren't as critical.

 

:grouphug:  Mom and good job.

[Lecka]

Wow!  What an improvement :)  

[MomOfABunch]

It is huge improvement! And I'm trying to keep that perspective. She is 13 now and thinking about the future is scary. She has 9 more years until she ages out of her private day placement. That's a long time...but at the same time it isn't. At that time her brothers will be 10, 12, 14 and 22. I don't see us transitioning her to a group home until my younger kids are grown, unless that's something that she really wants to do. In my area, once kids age out of special education, there is pretty much nothing for them; she will be home with us. And that's probably ok. Now, she's better off at school. They maintain a 1:1.5 ratio, which is better than I can do for her with the other kids.

 

The tricky thing is to pick out the skills that will really benefit her in the future. Obviously, maintaining the behavioral gains she has made is most important. Functional life skills next: independent personal care, clean up after yourself, occupy yourself with something constructive.

 

Basic academics after that, but with a functional emphasis, like typing with word prediction so that she could learn to text so that she could have a phone. Learning how to talk on the phone would be a good too. Enough reading so she could read for enjoyment or look up things that interested her on the Internet. Functional math so that she could do her own shopping and manage her own money. Safety and how to access public transportation too.

 

More than anything though, I want her to find something to occupy her time that is meaningful for her. I don't think I'd make her have a job, unless she wanted to; she'll have SSI. So she needs a hobby that is meaningful. Ideas? She loves arts and crafts, but needs a lot of help to do more than 3 year old-ish painting, coloring, cutting/gluing, etc.

[OneStepAtATime]

What about something more like abstract painting?  Where you don't have to make things look real.  DD does lots of different kinds of art, with a ton of different medium.  She likes to experiment.  At the moment she likes using acrylic paints with crafting and art tools to make unusual patterns on canvases.  We just put a large piece of plastic on the floor and let her experiment with the materials at hand.  I buy art supplies whenever there is a big sale so I try to keep the art cabinet stocked.  It is lockable so we can limit use when necessary.

 

Also, might your DD be able to learn to sew?  Or knit?

 

Maybe sculpting basic shapes like bowls with clay?

 

Does she like creating stories, even really, really basic ones?  Perhaps she could work on using text to speech software and create her own stories?

 

Maybe baking?

 

What about a musical instrument but with a program that is very gentle and does not emphasize reading notes?  Simply Music is a great piano program that teaches patterns on the keyboard.  The notes are introduced, too, but very very gently.  The assumption is the notes will come with time but to get someone playing more quickly the patterns are the place to start.  It is like how we normally learn our native language.  You start by hearing the spoken language and associating the words with what you see around you.  It was originally written for blind people but adapted for anyone to use.  There is usually an offer of life time access through Homeschool Buyer's Co-Op for a one time fee.  Lessons are pre-recorded.  They are short.  

 

 

[kbutton]

More than anything though, I want her to find something to occupy her time that is meaningful for her. 

 

Wow, I am very excited for you and your family. This is a wonderful accomplishment for her.

 

I think you are onto something with this. I would try to balance out artsy stuff with things that don't require fine motor skills and complicated directions. We have friends with SN kids that don't have constructive things to do unless prompted and cajoled (and they wish their children did), so if you can find things, I think this will go a long way. Sometimes these kids just don't have a lot of interests, but they respond to people. The friends in question are elated because their daughter (older HS age) was selected for special job training this summer, so she won't be stuck home bored. (She's more of a people person than an occupy herself person--it's not slacking on the parents' end.)

 

One woman I know has helped her daughter volunteer over the years. They often did this together. They also got into an exercise routine, so the daughter can use the Y. I know that part of it was a need for something to keep PT skills going, but I think that's a wonderful area to focus on.

 

Would she like to garden, learn to sort things (lots of volunteer jobs involve sorting), learn animal care? Would investing in some tools that make arts and crafts easier and less skill dependent be helpful? I'm thinking of things like punches or a mini die cut machine to make shapes and pretty things to go on note cards, for example. (If she likes card making and such.) If you have a friend that is heavily into a craft that has overlapping interests with your daughter, maybe that friend would let you use tools to make pre-cut crafts and such. 

[MomOfABunch]

Would she like to garden, learn to sort things (lots of volunteer jobs involve sorting), learn animal care? Would investing in some tools that make arts and crafts easier and less skill dependent be helpful? I'm thinking of things like punches or a mini die cut machine to make shapes and pretty things to go on note cards, for example. (If she likes card making and such.) If you have a friend that is heavily into a craft that has overlapping interests with your daughter, maybe that friend would let you use tools to make pre-cut crafts and such.

We recently moved and are venturing into more self sufficient living. We have chickens and she likes them ok. We had sheep at one point and she really liked when we had lambs. Getting a garden going is in the plan for this year. She used to like playing in the dirt and she does like to pick the petals off flowers 😛

Getting her a die cut machine is a great idea! Her favorite thing in the world is if she can get someone to draw shapes/characters so she can color them. I can't believe I never thought of that! Thanks 😃

[MomOfABunch]

What about something more like abstract painting? Where you don't have to make things look real. DD does lots of different kinds of art, with a ton of different medium. She likes to experiment. At the moment she likes using acrylic paints with crafting and art tools to make unusual patterns on canvases. We just put a large piece of plastic on the floor and let her experiment with the materials at hand. I buy art supplies whenever there is a big sale so I try to keep the art cabinet stocked. It is lockable so we can limit use when necessary.

 

Also, might your DD be able to learn to sew? Or knit?

 

Maybe sculpting basic shapes like bowls with clay?

 

Does she like creating stories, even really, really basic ones? Perhaps she could work on using text to speech software and create her own stories?

 

Maybe baking?

 

What about a musical instrument but with a program that is very gentle and does not emphasize reading notes? Simply Music is a great piano program that teaches patterns on the keyboard. The notes are introduced, too, but very very gently. The assumption is the notes will come with time but to get someone playing more quickly the patterns are the place to start. It is like how we normally learn our native language. You start by hearing the spoken language and associating the words with what you see around you. It was originally written for blind people but adapted for anyone to use. There is usually an offer of life time access through Homeschool Buyer's Co-Op for a one time fee. Lessons are pre-recorded. They are short.

That sounds really interesting, I'll check it out. I saw this the other day: http://www.abapianolessons.com. Genius. I wish I thought of it.

 

DD has pretty significant fine motor issues, so idk about knitting/sewing. She may like clay, there's something to try. She hates play doh though, it's very hard for her to manipulate. I like the idea of an art cabinet for her. I think I'll work on that this summer.

 

I think she would love writing stories. I have yet to find a text-to-speech program that understands her though. I also haven't looked that hard. She has apraxia and is mostly understandable to people that know her, but not unfamiliar people or technology.

 

I would love for her to learn to cook/bake. I saw a little kid cooking program somewhere. She's in the 3-5 year old developmental age range for most things. Safety would be my biggest concern.

[OneStepAtATime]

There are things to cook that don't really involve ovens or knives. Microwaves seem safer to me. I think I remember a cookbook for those with dexterity challenges but I can't recall specifics.

 

Maybe you could start her with salads. I have a friend that would precook/prechop what was needed for salads and have her kids do the assembling. Everything was stored ahead of time in the fridge and the kids would assemble the various ingredients into something. They chose order and quantities so it could be their own creation for the family to eat.