It’s me, I know you can’t believe it. Me neither.
Today; I was reflecting on all the families I talk to now and over the years. Typically it’s about resources that I know off the top of my head or living with Rett. Interesting enough though, I’m one that can’t even tell you what the heck I ate for breakfast today. But, when it comes to special needs in MA and resources’ it now comes second nature to me. I give thanks to my favorite pink ladies 😉 Particularly; from my old boss Mary whom I’ve learned from over the years in more ways than one. She’s a keeper!
With that, I said to myself (don’t judge-you do it too) “Gosh Mags you could just put it in that blog you never write in anymore.” And here I am.
But, I’m going to take it a step further. I’m going to start in the beginning. After all, this blog is about living with Rett.
It started when my beauty was 3 years old and we didn’t have a diagnosis of Rett but of Autism. Some of the things I did with her didn’t make sense. Like, I would make her walk up and down off sidewalks. Walk through plants (even in cold winters), danced around nonstop in the living room-it was a game for us. She was a busy body (skipping on the side walks in military housing with those 5 dollar plastic heels). Click click click, back and forth she went. Like I said “wiggle wurm, busy body”. You wouldn’t have known that a year later she would be diagnosed with Rett Syndrome. I’m grateful to this day that I pushed her and everyone in her life continued to push her in the physical aspect of her life. Once, diagnosed with Rett Syndrome (I will always remember the numbness that day). We enrolled her in therapeutic horseback riding. I drove her every Friday for almost 40 minutes to go to the closest riding facility called High Hopes. In my heart, she pushed herself and become stronger and stronger. I’m thankful for pushing-as today the doctors are amazed on how well she can maneuver independently. She only uses a wheelchair if we go to the hospital, mall, somewhere that walking even for myself would be exhausting! My advice: trust your gut. Do the little things like play, be goofy and who cares who is looking. Your daughter will truly enjoy it and you will be thankful too.
So, I talked about the physical part. The communication is a “big factor” BIG! I was just chatting to a mom recently whose daughter got a diagnosis of Rett and she asked me “what’s the number one thing you are glad you did?” “Look at me”. When Madasyn was little it became a habit for me to ask her “look at me” “I need your eyes”. I can tell you why. I didn’t do it because I thought it would have an outcome or benefit. I did it honestly, because I hate repeating myself. L.O.L. little did I know that my life would be like a groundhog day forever. This became so crucial in her later years….. “look at me” became imperative as she didn’t have hardly any typical vocal speech, she started to lose the ones she had. My hubby and I taught her this new skill in the most quiet times. Meaning the most quiet in terms of able to get her attention. Right when she laid down for bed. She was calm, I would sing her my special song and say “look at me-does mommy love you?” I would then squint my eyes real tight and say “yes”. Then I would ask “do you love mommy?, look at me.” I would tickle her right under those pities to get her to giggle and sure enough she looked at me. Then after NIGHTLY doing this-she always waited for the tickle (lil’ bugga) and then she did it all on her own. She tightened her eyes too while looking at me. My heart dropped. Here I had a little girl who understood and showed me I can do it mom moment (you’ve had them, if not my promise to you-YOU WILL). Believing set in and it’s been a driving force ever since! She started to cry for everything. I MEAN EVERYTHING. If, something hurt (cry), toilet (cry), hungry (cry) and tired the list goes on. (I’ll make you cry if I keep going 🙂 But, our focus stayed on these listed above. She was crying in bed a lot and we couldn’t figure it out. It was driving us insane, to not know how to help her. Something was wrong-we needed to fix it! So, while in bed we gently leaned over face to face we started with “look at me if…” ” look at me if your hungry”, “look at me if your tired” and so on. She started to communicate by looking and we could help her. Fast forward at age 15-she looks on command and it’s even been helpful on her Tobii device. I don’t know what I would do if she didn’t have a firm “yes” and “no”. To this day you can rely on her to “look at you for yes”. But, caution life isn’t about “yes” and “no;s” don’t constantly ask direct questions if you use a Tobii (she will shut down for sure!). Communicating is not a test, it’s spontaneous. Teaching a skill and using it when its appropriate is different. Overboard is deadly when it comes to direct questions. We’ve lived it. That’s another blog time..I promise!
I do regret not focusing on the hand skills-she did have OT in school only but, I wasn’t honed in on the signs of her decreasing functional use. Do, I regret it? Indeed, everyday. A neurologist told us once when she was first diagnosed to keep her hand functions going. We were lucky to get the D.E.S.E. grant 2 years ago through the Department of Developmental Services here in MA and the Department of Education. It’s a grant that is yearly till age 22. I got to write goals, manage on what to work on and when to work on it. We focused on communication goals, physical, ADL’s and incorporated lots of opportunities for hand functions too. She’s age 15 now and she has been grabbing her fork to eat, she’s been self drinking with easy grips and a covered cup. Once again, her determination is shining through. She never seems to amaze me that’s for sure. We started though with everything having to be built up. A paint brush-I would go to Home Depot and buy pipe insulation that stuck to each other and cut it up. It would great. Markers had crayola model magic on them. I went to the craft store and bought wooden knobs or spools and added Velcro to it and placed the connecting side to big rubber stamps. Now her paint brushes are typical. She’s been holding a nonbuilt up fork and with advice from her awesome in home tutor she’s learning to turn on and off her lamp in her room by stepping on it!!!! The increase in wanting to use her hands has been only after two years of having an art therapist student who was her skills trainer (through the grant) teach her “wrap your thumb”, “pancake hands”. Loads of patience, making things fun and believing in her. All the while modeling on the Tobii and encouraging natural speech. We don’t have Leanna any more but, she was an intricate part of Madasyn’s life of teaching. We love her. It also,transformed into something bigger. Madasyn’s amazing home aides all started doing it too. Whenever it was natural we did it, whenever we could work on a goal. We did it and still do it. It has to make sense-meaningful and please make it something she’s interested in. Let her try age appropriate things for the love of Pete. Our aides I’ve noticed have been starting to put themselves in her shoes. Meaning able to think outside the box. When you find folks like that-grab them!! It’s rare to find them and it’s invaluable to us and Madasyn. I wish I could give them all raises, I would!! She’s had many aides over the years and ,most touched her life in someway and ours. The ones that came up with ideas of their own-and weren’t afraid to ask to try it and truly loved her, my heart has a special spot for you. There aren’t enough words.
Sensory overload, not just for her but myself, her brother and dad too. Seriously; we all had to be desensitized. She needed it in the real world and we needed it from Rett World. When that nasty head appears and the crying days of her having a non language based device (before Tobii time), she had a device I called it the beast. We were guilty here at the home, desperate for her to communicate, we asked her direct questions all the time. The school used the device to test in general. All hell broke loose. The only thing we could do was change the scenery. Often, it became the television. DON’T RELY ON THIS TO BE THE OUT! Television is not your child’s friend. A little is great, but it’s the number one thing I regret was introducing t.v. to her. The weird thing is for years she wasn’t interested in it at all. We kind of forced it on her. (yup not too smart on our part). But, when you are desperate and can’t take the crying-well I mean screaming. You do what you gotta. Well, that back fired real quick! Her crying became a behavior for the tube! Caution and I say it with extreme caution when using it. Even though it was a way for us to have a guarantee quiet dinner time. We were creating a behavior that we are still working on till this day. Her screaming has decreased a lot (not gone away though), it’s due to everyone doing things the same. Not giving in, most of all having a device to communicate on and that YES/NO reliability. For years I envied “typical” families. Going to restaurants, shopping, gatherings….(we couldn’t) because that Rett monster would appear with a screamer attached to it everywhere!! If, we went somewhere and there where too many people already there-here anxiety hit the roof! If, we were invited to a family party-hubby or I would have to be with her inside. It was too hot or too loud for her. Honestly; we gave up going anywhere. She hated being out and about and so did we with her. I know it’s not nice to say, but it ruined everyone’s time. My husband and I wanted to do it as a family. Then when we tried-reality set in. She couldn’t handle it, nor could we. We gave up. I know now the more you do it, the more they learn to cope. It’s exhausting, but worth it. Just three years ago she was introduced to being desensitized to outings. With strategies put in place. Well, we have to prepare first-after all we are talking about Rett remember? Go to the parties early and allow people to trickle in, tell her what is expected often. And for places you can’t control? Well, start out small-go to the grocery store for 5 minutes, make it a quiet small store and have her pick something out. Then leave. Keep increasing it each time-but go to the same place. PRAISE HER A LOT! AND TELL SHE’S OKAY IN S A SOOTHING VOICE! Be specific “Madasyn I’m proud of you for going to the grocery store.” Now-the little wiggle wurm asks on her Tobii to go somewhere ALL THE TIME. She’s getting expensive-she loves the mall and shopping!!! (it’s awesome!-very typical for a 15-year-old).
Resources: (my experience is from Massachusetts)
- Apply for the Department of Developmental services. You want help now and need the state to recognize she has a disability to get supports that she is entitled too. Create a connection with them. Don’t just always ask for what she needs, tell them how she is doing too. After-all you want them to remember who your family is. Enrolling early will also help for her future supports. You will learn resources through D.D.S. Don’t be afraid to say I don’t know, can you help me find out? Or do you know where I can turn to?
- What services can you get? (Fiscal runs from June 30th-July 1st). Request a sit down to discuss her needs prior to the fiscal year. Always keep in mind her “needs not wants”. Be realistic.
- Family Stipend Plan or Family expenditure (can help pay for therapeutic services not covered by insurance ie; horseback, music, swim are some of the ones we’ve used)
- Connections to support groups, or community activities, grants and so much more
- Apply for Mass Health Insurance (even for secondary or third insurance for your child)
- What are you able to apply for, if qualified? Personal Care Services, Pull ups or Diapers, Chux, Gloves, Assistive Technology, Speech, Occupational Therapy, Physical Therapy. (all of these your child’s pediatrician can put a request in for these).
- Once approved apply for Premium Assistance
- Seek a communication device if needed, trial various ones. Your daughter is never too little to communicate! Insurance will pay for Assistive Technology (A.T.) (communication devices, switches, activity chairs any supports she needs to be able to function on a daily basis). Typically, an Occupational Therapist or Physical Therapist writes a letter of medical necessity (I used her school). Key words “medical necessity and continuity of care”. For example: we got denied for a bath chair that moves up and down in the bath tub. They would approve a hoyer lift style. So, I wrote a letter and asked the therapist to write a letter too. We stressed on how it was medically necessary for her to be able to have a chair that can allow her to ease in safely in a bath tub. She can not use a hoyer lift style because she couldn’t hold on-it’s unsafe and can be fatal if she falls. Well, we were approved for the automatic. Sometimes, insurance companies will wait for the appeal. So, do it-what do you have to lose?
- Consumer Empowerment Funds Program:up-to $500.00 a year for training’s, conferences, workshops and I used it for communication camp (not camps in general tho)anything that can empower you, the family or your child. Apply as soon as you know you are interested. They will let you know if you are approved and then will reimburse you after the event.
- Family TIES of Massachusetts (resource experts!!)
- Federation for Children for Special Needs (will answer any advocacy questions for schooling and so much more!!! for free!) Take their advocacy training-it will pay off in the long wrong on how often you will use it!
❤ REMIND HER DAY IN AND DAY OUT HOW MUCH YOU BELIEVE IN HER ❤ Continue reading