What is it like to bring up a child with Fragile X Syndrome?

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I get asked this question a lot by other parents and wanted to address it here. Before we begin though, I would just like to say that my son (Charlie) only has mild fragile x, which we are very thankful for – it could be worse. Also please note that none of the information provided here is advice and you should always consult a doctor or medical professional. Continue reading

Developmental Milestones: Early Detection of Fragile X Syndrome

Fragile X syndromeAre you monitoring your child’s development? Is he achieving every developmental milestone as he should? If your child is not showing signs of positive development in terms of physical, mental and psychological aspect, you should consult your pediatrician so you’d be referred to a specialist whenever needed. Here are some developmental delays that a child may have when he has fragile X syndrome:

Developmental Milestone. Children with fragile X syndrome may have difficulty sitting, standing and walking. The earliest symptom during infancy is their inability to roll to one side as expected to happen during the first six months of infancy. Within the first six months of life, your child usually should respond to sounds by making sounds, sits without support for a short time, smiles back at you, as well as turns his head when you call his name.  When he doesn’t do any of this in the first two months of life, you should consult your doctor so that tests can be done to identify the problem.

Feeding and Nutrition. Parents or caregiver may experience difficulty in feeding the baby as there is frequent reflux and vomiting. In some instances, the syndrome may not be noticeable and may be attributed to other condition because the child frequently asks for food, leading to obesity.

Behavior. Noticeable behavior changes like tantrums, with episodes of self injury do happen. They may have difficulty coping when routine activities are altered. You will also notice that they rarely respond when you talk to them, much like an autistic-like behavior, like poor eye contact, social avoidance and hand biting. They may also show signs of attention deficit with hyperactivity, as well as defiant oppositional traits. Seizures may also happen between 6 to 24 months of age that the child may require anti-convulsive therapy medications.

It is best that these symptoms be recognized and diagnosed for confirmation of Fragile X syndrome so that parents can help the child as much as they can. Plans on subscribing for Bluebird Care (Maida Vale) especially for these types of condition may be sourced out as soon as possible. The earlier the child’s condition is accepted and dealt with proactively, the more positive outcomes can be expected accordingly.

Note that this condition is not curable and it is hereditary. The focus of care is supportive such that there may be recommendations for bluebird care for home modifications, disability learning or domiciliary care, whichever is applicable. Research is still underway for fragile X syndrome babies. They grow strong with proper support from parents and love ones. Helping them learn despite their mental disabilities is one of the most significant elements, especially when the child reaches school age.

Though the syndrome cannot be treated as of now, the child can be helped to reach his full potential. There may be medications prescribed by the doctor to improve behavioral problems. A team of allied health professionals and special education teachers usually helps the child with fragile X reach his fullest potential. It would also be recommended that the family seeks emotional support from loved ones and community organizations that offer resources for fragile X syndrome babies.

Make Your Home Safe For Your Child With Fragile X

This post really applies to all children, but I decided to keep it relevant to the main topic of this website.

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Today I would like to talk to you about keeping your home a safe environment for young children. Many of you readers have young children and you know I do, making it an important topic.

Furnishings

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Very disturbing image of window blind dangers

The first thing to think about is the basics. Are there any sharp corners on tables or cabinets? Do you have high cabinets that can be climbed? Are there window blind cords in reach? On that note, you should go to Jones Perfect Fit Blinds for no cords. Is there any small parts on your furnishings that can potentially be pulled or chewed off?

This is quite a bit to think about, but it’s important to having a safe environment for children.

Dining

You will want to invest in special cutlery, plates, bowls and cups for younger children. Ceramic plates/bowls can be very easily broken and for young children, plastic is the best material for cutlery.

Toilet

When my son was a bit younger, on one occasion he managed to lock himself in. He locked the door without any problems at all. But it was a bit stiff and he couldn’t unlock it at first. After he calmed down a bit, he did manage to unlock it fine. It is not a problem anymore. With younger children though, you may not want a lock on the door. I have heard of people using a do not disturb sign to hook on the door, that’s up to you.

Well there you have it. A few ideas for making your home a safer environment for children. Don’t forget to check out the Jones Collection of child safe furnishings. Take care.

In home care and assistance for your child with Fragile X

This is the the second post in the 2 part series of hiring home assistance to help stay healthy and take care of a family member with Fragile X Syndrome. Read the first post here: Hiring a Chef to Help with your Diet.

A lot of the time, standard child carers or day cares may not want to work with children that suffer from Fragile X. It is understandable because often in times it will make the job more difficult. Well today I would like to show you what I have personally tried successfully and that is hiring a professional carer to visit your home and offer assistance. For me personally, this can be with preparing meals as per the previous post, or more importantly – allowing me the opportunity to go to the gym and keep fit & healthy.

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This service is called domiciliary care in the care industry. It is also often referred to as “home care” or “in home care”. You would usually hire an agency rather than an individual, this way you are not tied to relying on a single person. An easy way to find local domiciliary care agencies that are reliable is in local directories. You’ll also want to check their quality standards. In the UK for example, you can have a look on cqc.org.uk to see their care quality rating.

But before you start searching for a local agency, here are some of the benefits of hiring one:

  • Flexible care to your specific requirements
  • All care takes place in your home making it easier for you to manage
  • Your child will be more comfortable being in their usual surroundings
  • Their carers are professionally trained to deal with children with Fragile X, Autism, etc

Overall home care is a fantastic service offered by people that genuinely care about help others. I personally use it for help with preparing the meals, small household chores and allowing me the opportunity to visit the gym for an hour every so often. If you have any questions about the service, I am more than happy to answer them.

Also I must note, you do need to make sure they are trained to work with children that have Fragile X. For me personally, having experience of working with children that are similar was very important to me, but they can be fully trained without having much experience. Just a thought for you.

This video will help explain domiciliary care services a bit further:

On a completely unrelated note, but not important enough to put in a separate post. I recently ordered these blinds for the downstairs:

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I got them from a company called Blinds Manchester. They were fitted today and look beautiful. Now we just need to get the bedrooms done and the upstairs. Charlie wants one of the kids themed blinds. Apologies if you’re not a regular reader here, this may seem unrelated, but I like to share with my readers as you all seem to care so much.

Back to the topic at hand, what do you think of hiring home assistance? Have you done it before or do you believe it will help you? Let me know in the comments section below.

Hiring a chef to help with your diet

It’s hard to look after a young child while maintaining the house, cooking meals and so on. I personally struggle with it. That is why I wanted to share with you something I’ve been experimenting with recently, hiring another set of hands to help you prepare meals.

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It is also one of the biggest reasons I see people giving up on their diets. If you have junk food around the house, you can easily eat it or throw together an unhealthy meal with burgers, chips, and so on.

Whereas if you hire a chef or an in-home assistant to prepare meals for you. Especially if they are a healthy chef such as a raw food chef, or a paleo chef, etc. they will either buy the ingredients for you or tell you exactly what to buy. Then you’ve got no choice but to eat healthy. Alternatively if it is simple an home carer, at least they will prepare the meals for you, this way you don’t need to free up lots of time to prepare a healthy meal.

The downside of hiring a great chef is the price, in fact I’m not privileged enough to be able to afford one myself for every day of the week. You can always eat out at a healthy restaurant, but that gets expensive too. The next best alternative is to only buy healthy ingredients that you and your family should be eating and then hiring in home assistance from a home care agency.

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Home care is mostly aimed at older people, but it is a great option and used by many families. Make sure you explain that you’re interested in this type of assistance because they’ll have to ensure someone is right for the job. Home carers are also fantastic for caring for your child that has Fragile X. I have already heard of so many of you in the exact same situation and I am blessed that you take the time to read my blog and experiences. If you explain to the agency/carers that your son or daughter as Fragile X Syndrome, they will give you a specialist with past experience. This means they can give you some extra assistance on top of more time freedom. I’ll write an update later with more information about this.

If you are going to look into hiring one of these agencies, they are called domiciliary care agencies. They provide services such as home care and live in care. Both are basically different planned schedules around having a professionally trained carer visit your home to help you or your family. These visits can range from 30 minutes all the way up to “live in”, where they literally live in your home with you.

I personally have a regular home carer who helps with preparing meals and gives me some alone time where I can go to the gym and keep my health & fitness up. How you use their time is completely up to you.

Good luck with living a more healthy lifestyle and caring for your child with Fragile X. Please leave a comment if you have any questions.

Staying Safe in the Sun with Perfect Fit Blinds

Part of the process of keeping healthy is avoiding dangers to your health. Most people see this as exercising regularly and eating better foods, but there are many other dangers you should be thinking about. One of those dangers is sunlight. Over exposure to sunlight can cause cancer as well as many other problems. That is why my husband and I decided to have blinds fitted in our conservatory/sunroom to protect our family from the sun.

Receiving sunlight is clearly very important, our bodies rely on it for the natural nutrients (e.g. Vitamin D) but too much exposure to it has been proven to be dangerous. Just search “dangers of the sun” in Google and you’ll get 24,100,000 – that’s 24.1 million results, yes I said million.

Most of the dangers from the sun are ultra violet radiation, this has been scientifically proven to cause skin cancer and is very dangerous if overly exposed to humans in amounts or time. The earth itself has a natural protection for us from the sun, the ozone layer, though it’s being damaged more and more from the greenhouse effect – but we’re getting better at that now.

For the non-science / technical people like myself, this image kind of explains it best:

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This post isn’t so much about the dangers because there is a lot of people scientifically trained that will give you much more information about that and most likely much more reliable information. What I’d like to talk about is one specific way of preventing over exposure to sunlight and UV rays. It is related to what I’m doing right this second.

Relaxing in the conservatory.

I burn easily so this is also an advantage to me. A lot of my friends have or had conservatories without any sort of sun protection, they looked empty like this:

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Whereas in my house, we have something called perfect fit blinds (by Harrietts), which does 2 things for my family and I:

  1. Looks very nice in my conservatory, the primary reason we chose them
  2. Protects me and my family from direct sunlight and UV rays

I personally opted for UV protected pleated blinds, but you can also get perfect fit venetian blinds, roller blinds, and wood venetian blinds.

This is how they look when they’re fitted:

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I didn’t want to use a photograph of my own house, so you may notice that there isn’t any blinds on the roof. I personally have this in my house and it works great with the perfect fit blinds system. My house is a bit of a mess, you really do not want to see it!

From a blinds perspective, the reason I’m showing you PerfectFit blinds rather than regular window blinds is that they require no drilling into your conservatory. You can always replace them in the future without any problems. They fit in nicely and look like they’re part of the conservatory rather than an after thought.

I do hope that helps with one avenue of protecting your family from dangerous sunlight. If you are interested in this type of information, I will do a follow up post about keeping your family safe and healthy at home. Please leave a comment if you are interested.

Caring for a family member suffering from dementia

Unfortunately no matter how great your health, you can still suffer from a disease such as dementia or alzheimer’s. We recommend rather than trying to care for a family member suffering from one of these diseases yourself, you hire a home care stamford agency to help with it.

They’ll usually have trained carers that have dealt with different levels of dementia before, this way you’ll get the perfect care for your family member. The other thing you’ll need to think about is the amount of care needed. Will it be a short 15 minute visit every day? Or a long 24 hour visit multiple times a week? Care at home agencies built a schedule around what works best for you, and the person in need of care.

dementia care stamford

It’s advised you arrange an appointment with a home care agency and discuss your family members needs with them, this way they can help create a tailor care package for you. This will also account for your funding, whether you’re paying for this personally or have a level of outside funding to help cover it.

Another “strange” thing that’s been proven to help sufferers of dementia is a pet.

Why You Should Never Skip A Meal

When you are a full time mommy, it is super easy to get caught up with “stuff”. Household chores, looking after your children (especially when they suffer from fragile x syndrome), and so on. If you are anything like me, which I believe many of you are, you’ll know how easy it is to pass up on a meal. You’re busy doing things and want to get it finished first. Plus who has the time to stop and make a meal? It wouldn’t hurt to miss a meal, could be useful with weight loss, right? Wrong.

I must confess I’m guilty of skipping meals plenty of times. Asking a few friends showed me that I am not the only one. But skipping meals is definitely not healthy. If you want to stop eating, you should only be skipping snacking between meals, the meals themselves are fundamental to a healthy lifestyle.

Well for the past 6 months I have barely missed a meal. Unfortunately I cannot say I have not missed a single one because I am human after all. In most cases though, I am getting my 3 meals daily.

To explain this to you better and using  science from an expert on the topic, I found this video on YouTube. Take a look, it’s fascinating and very information.

So what should you be doing? Put simply, cut down on the unhealthy foods. Personally I done this bit by bit starting with fizzy drinks, chocolate, then all candy. This did eventually evolved into chips and most fast foods. Now-a-days I practically exclusively eat healthy foods except for the occasional cheat day. Everyone deserves a cheat day sometimes. Tim Ferriss has recommended one per week before, I personally only take one every month (for the most part anyway).

One great place I suggest learning about eating and living healthy is the Nutrition.gov guide to healthy eating. It’s owned and ran by the US government so it is definitely a trustworthy source of information.

Live long and healthy!