Grace for Rett » Grace's Life with Rett Syndrome

Rett syndrome regression // the screaming and crying

“If you’re going through Hell, keep going.” -Winston Churchill

One of the most heartbreaking issues to come up in the parent support groups for Rett syndrome is this issue of the screaming and crying during the period of regression. The helplessness in the voices of these parents – I remember it so well. And I’m here to tell you two things:

You’re not alone.

It WILL end.

Here you’ll find an abstract from a paper about the regression phase of Rett syndrome. A quote about the crying: “Social withdrawal and inconsolable crying often developed simultaneously with social withdrawal for shorter duration than inconsolable crying”.

In this from the Mayo Clinic, I quote, “Periods of crying or screaming may begin suddenly and last for hours”.

So there you have it. You’re not alone and your daughter isn’t unusual.

Let me tell you, when Grace was in this period, it broke us. Grace’s screaming happened at night for hours and hours. She could scream and cry for 4-6 hours. And this lasted for months. At times, Steven and I screamed and cried with her. I have never felt such feelings of helplessness, desperation and utter hopelessness. I yelled at God. I swore. I pulled my hair out.

There’s no explanation for why this happens. Are they feeling pain? Is it an autonomic response? Grace wasn’t able to control it either, so I can only imagine that living in her body felt like being on a runaway train. Can you imagine…you’re just getting your start in life, learning how to feed yourself a cookie and then -BAM- you suddenly can’t grab that damn cookie and everything you just learned how to do is slipping away like grains of sand.

Point #2: it WILL end. I swear to you, someday you’re going to look back on this with relief that it’s over. I realise that when you’re going through it, that doesn’t help. But just hang in there. I swear it will end. Here are some things we learned in this period:

  1. When she’s crying, check all the normal things you’d check if a kid is crying. Does she need a nappy/diaper change? Hungry? Thirsty? Is there something poking her, pinching her? Has she recently been ill?
  2. Ok so now you’ve ticked those things off the list. Give her a cuddle. Rock her a little. Is she just plain sad?
  3. Because Grace couldn’t talk and I didn’t know if this was pain, we gave her pain relief almost every night during this period. Nothing major, just a little paracetamol (that’s “Tylenol” to you in the USA). This at least put our mind at ease in the case that this was pain.
  4. After you’ve done everything you possibly can, there must come a point where you ask yourself, “does me staying right here fix anything?” I found that staying up screaming and crying with Grace did nothing but render me incapable of functioning during the day and we had two other kids to nurture and care for. Easier said than done. I really only remember sleeping in my bed while Grace screamed like 2 times. But I do remember countless nights of sleeping with my arms around her while she cried. I don’t know how I managed to fall asleep with her screaming in my face, but desperate times call for desperate measures.
  5. If you’re married or in a relationship at this time, this period will likely majorly test your togetherness. There are striking statistics about the failure of relationships after something occurs like the death of a child or major trauma and let me tell you, this period of Rett tested our marriage. We blamed each other for things, fought about whose turn it was to stay up with her, fought because we couldn’t find out why she was crying. We vented on each other because in the dead of night, there’s no one else to lash out on. Lesson learned: give each other a break. If he/she went off on you in the night, give them a clean slate in the morning. You have enough to worry about without letting your confidence in each other to wane because of unforgiveness of naughty behaviour.
  6. If you live in close proximity to your neighbours like we do (we live in a semi-detached house) then it might help you feel better about night time screaming if you just explain to your neighbours about your daughter’s diagnosis and why they may hear her crying at night. This isn’t something we did, but I wish we had because at night part of the stress was knowing that their daughter’s room was right up against hers and I realise it may have just sounded like we were neglectful parents who didn’t tend to their baby.
  7. As much as you can, talk to your daughter and explain that you know she’s going through something horrible and you’re there for her. In fact, there was a point where we sat down with Grace and explained to her that she had been diagnosed with Rett syndrome and that it would be hard but we were going to do it with her.

Here are some excellent tips from Steven about getting through it:

  1. At night, take turns getting up. If one spouse works and the other is a stay at home parent I would recommend the one who works would get up 3 times that week and the one who stays at home 4 times. Only because you don’t want the bread winner falling asleep at work or having a nervous break down.
  2. Rotate weekend lie-ins. We do this as often as possible and it’s a great gift one can give to the other.
  3. And once the crying stops, when they grow out of it, get counselling. Individually and as a couple if needs be. You need to find yourself again. You are not just a Rett parent! You are so much more and the whole intense period of regression can make you feel like nothing more than a special needs parent.
  4. Talk about the diagnosis and the the crying to a stranger who is trained to listen and give good advice.
  5. Get away for a day or two. One parent holds it together whilst the other one gets a break. Visit a family member, go camping, hiking etc. Then the next opportunity the other person gets away. Turn the phones off when gone or ask the spouse to only call in dire situations.
  6. Husbands, become (if you’re not already) a hands on kind of dad and husband. Cook, clean, serve you wife. Put the kids to bed. Take them out for a day or a few hours and give the mum a break.

Overall, the most important thing I can remind you of is that you have to take care of you because YOU are the one who’s holding it all together. It’s not selfish to sleep. It’s not wrong to get a baby sitter and go away for the day. The dishes will always be there. Forget the washing. Accept help. We have a saying in our house “if momma ain’t happy, ain’t nobody happy.”

You can do it. It will end. You’re not alone.

Pam Almstedt Swain - February 24, 2015 - 7:54 pm

A friend of mine daughter did this, But she was older in her 20 could this be the same thing? Nothing would quite her sometimes and one time I stood outside and listen to her scream not knowing what to do. Her parents did the same hing we were all at are wits end.

Scott L. Vannatter - February 24, 2015 - 8:06 pm

So glad to hear you are holding it together. I worry about you and your family. Keep posting. I am learning so much.

Delaina Pitts Hancock - February 24, 2015 - 10:02 pm

We aren’t dealing with Rett but with two special needs children, one with Aspergers who has some big meltdowns and one with PTSD and major trauma which does result in lots of screaming/raging this was actually a very helpful article for me. Thanks for posting this.

Monique Ray - February 24, 2015 - 11:17 pm

As a fellow rett mom I have to tell you that you nailed it. I think we went through all those same emotions. You gave great advice.

Becky Vandergriff - February 25, 2015 - 12:15 am

Wow this was an excellent read. Literally all Rett parents from the start need to read this. I wish I’d have had it. Brings tears to my eyes as I remember that time. Thank you for your honesty. This will help many.

Roxanne Parr - February 25, 2015 - 2:16 am

Never realised it was so prevalent in our girls. Went through this for about 18 months.

Yazmin D Diaz - February 25, 2015 - 3:46 am

Thanks Betty! Its right on. Funny I was just talking to a newly diagnosed mom about regression.
I’m sharing this with her. Thank you!

Annette Leone-Visconti - February 25, 2015 - 7:04 pm

Although I am not a Rett parent, I am a new mom and I really appreciate all that you guys had to say. I think it’s excellent overall parenting advice. I admire both so much for your love and devotion to Grace and the rest of your family. God bless you all :-)

Sally Harpic Luxton - February 26, 2015 - 9:22 pm

Wow. I think that my daughter might of had this but not been diagnosed.

Adriana Benavidez - February 27, 2015 - 4:32 am

Wow speechless this makes families Come closer n help each other out in caring for out rett babies

Candace Elise Rodriguez - February 28, 2015 - 8:25 pm

This really help i love this article

Cathy O'Sullivan Pellegrinelli - March 11, 2015 - 10:46 pm

Great advice

Emma Elson - March 16, 2015 - 3:08 am

Does it have something to do with PBA?

Our drive is going gorgeously!

We have been so astonished at the outpouring of generosity from people since posting about helping us with a place to live while we’re building Grace’s house adaptations. Here’s a little update so far:

  • We’ve found the house where we’ll live (It’s such a blessing and it’ll be 1 hr commute every morning to school and work)
  • As of today we’re at 85% of our fundraising goal! That’s BIG news!
  • No, your eyes are not playing tricks…our original goal was 3000 but we realised there are some hidden costs associated with moving out (and then back in again) and so it’s been increased a little.
  • Our £20,000 loan has been all signed off and building has been officially scheduled for 6th Jan. So it’ll be Christmas, Boxing Day, Packing!

Again, thank you everyone.

If you haven’t yet, you can donate here.

Please share this on Facebook and help us spread the word.


Anonymous - January 23, 2015 - 7:54 am

Congrats. God is good and provides so much. It me two years to modify our house here in the US. poulsen Home modification. God even provide an elevator

Help Grace’s family find a home

Grace is a 5 year old girl in England with Rett syndrome. Her family wants to keep her out of care, so the local government is helping to turn her house into a place she can live with her family for the years to come.

This is currently one of the largest builds going on in the region and due to a series of setbacks and mistakes by the council, this has been a whopping 4 years in the making! Thanks to inflation over these years, Grace’s family is now being strapped with a £20,000 bill towards the job.

So now they not only have a gigantic loan to face, but the prospect of moving out for 2-3 months while the work is being done. The council make no provision for this. There is no place to for Grace’s family to go so they need to raise the money needed to find a place to rent in the area.

Finding this place is no small feat in itself. With two large dogs, school, university and work to attend and a profoundly disabled Grace, just finding this place is going to be a difficult task.

To this end, we’re looking to raise the funds that will be needed to rent a house while Grace’s home is being turned into a place where she can continue to live with her loving family.

Will you help?

P.S. Any funds raised over and above (hopeful thinking!) will be put into the building work.

Rett Syndrome is a Processing Disability [describing the mental side]

Grace fell asleep, so her friend James had a chance to play

Finally! We have found a way to describe the mental disability side of Rett. Obviously, “mental retardation” doesn’t apply to Rett syndrome. Neither does “cognitive impairment” nor “learning disability”.

Yesterday when Grace was having an eye gaze training with Hector from Tobii, he said, “Obviously, eye gaze is more difficult for Grace since in addition to a physical disability, she also has a processing disability.” This very much lines up with Susan Norwell’s description of the most disabling thing about Rett syndrome being apraxia which prevents the girls from turning thoughts into meaningful actions as quickly as the rest of us do.

So there we have it, folks! When it comes to the mind side of things, Rett is a “processing disability”.

Grace’s Upsee Story [video]

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