Stay strong…..

It looks like our lives will be a little different for a while. It’s helpful to implement a schedule/routine if you can. This decreases the angst for children. It sets mini goals for each day, and it also outlines shared responsibilities from family members throughout the day.

If you can, go out for a portion of the day – either on your lawn, porch, backyard, out your window, your roof, or down your street ( P.S- I know one person who ran a mile with her son in his wheelchair, while they were only permitted to move 300 m from their home, in each direction, by their local government!)

You’re probably working harder than ever to keep everyone busy and happy.

So, to make that ‘together time’ as a family- fun, productive and positive, I’m suggesting MOVEMENT.  Active movement promotes endorphin release, improves blood flow, and maintains muscle strength and flexibility.

To exercise with your little ones:

Floor time is the best exercise for your little one who is not yet walking. While your child is on the floor, get comfortable get on the floor it’s a great time to plank, superman exercises, complete straight leg raises, hip lifts or pushups.

Short arc squats-Stand with feet hips width apart. Hold your child, and slowly bend knees, squat, and return to standing while you sing or count.

Hold your child; start in a seated position on a chair. Slowly rise, and then return to sitting. Hold your tummy muscles tight.  You can use words such as UUUPPPP and DOOOOWWWNN, use inflections in your voice and have fun with it!!

Side stepping- Hold your child and take a step to the side, stop. Then take a step in the opposite direction and start from the beginning. Side to side. Put music on and have fun with it!!

Heel lifts- Sit in a comfortable chair; bend knees, feet flat on the floor. Hold your child facing you, on your lap, closer to your knees, and complete heel lifts- Point toes, push down on the floor and lift heels, return to flat feet.

Lay on your back, bend your knees and place your feet flat on the ground. Hold your baby on your belly or trunk, march your legs in place.

Bridging- Lay on your back, bend your knees and place your feet flat on the floor. Hold your baby on your belly, lower than your belly button.  Squeeze your buttocks and lift your pelvis slowly, and then return your pelvis to the floor.  Include UUUUUPP and DOOOWWWWWN, with inflections in your voice.

If your child is small enough, put them in a carrier and take a walk

Relaxation techniques… deep breathing and visualization (look it up). Lay down in a relaxed position and contracts relax different groups of muscles.

Here’s some relaxation techniques to try –

Start at your toes, squeeze tight, hold for 3-5 seconds and then let go.

Move up towards your ankles, point toes downward, hold for 3-5 seconds and relax.

Bend ankles and lift toes towards your head….

Push knees down and tighten your thigh muscles….

Squeeze your buttocks…..

Take deep breaths in and out… fill your belly with air and blow out …..

Squeeze your hands, make a fist and relax…

Try to squeeze shoulder blades together or push elbows down on surface, hold for 3-5 seconds…..

Squeeze shoulders up and let them fall down and relax…..

Over exaggerate mouthing vowels, open and shut eyes, make an angry face and a surprised face, squeeze lips together and then, relax.

Repeat each movement 3x and move up your body.  Include your facial muscles.

Of course, only move in pain free ranges.  Check with your doctor before you exercise if you have any condition.

Movement breaks are important for everyone! It can be therapeutic, bonding, silly, fun, musical, and most importantly – filled with LOVE!!!

Day 10

We are currently on day 10 of isolation as a family. It’s hard to think that we have another 3 months to go. I am trying not to think about it, but it’s hard not to.

It’s so blatantly apparent in the media, on your timeline of every social media account, by even looking out of your window and the fact you aren’t able to be out there – that this is all very real, very scary, and really hard work.

It’s hard for everyone right now. I am trying not to wallow. I keep reminding myself why we are doing this, how serious and important it is. Every now and then I waver and the reality hits me.

My child requires occupational therapists, speech and language therapists, nurses, care workers, consultants, dieticians, physios, teachers, teaching assistants, and many others. Right now her dad and I are all of those things.

The pressure is tremendous.

But there is something I am learning. First and foremost, we are her parents first. Children know how to push their parents’ buttons. Amy is a child before she is a child with cerebral palsy. She is so much more likely to react to us with honest frustration and anger than anyone else. We are her safe space. The feistiness and lack of compliance is strong in this one! She knows how to articulate herself without words. Her lack of words is compensated with sounds, movements, hits, kicks, shouts and all sorts. It’s quite alarming actually as she gets bigger. (Just as I typed this I heard her dad shout “OW!!”… No doubt a back hand to the face.)

Don’t feel bad for not being able to do activities how you expected.

Secondly. Hard as you try to be all of those people – it isn’t possible! Some days I find I struggle even to be myself, nevermind an untrained, unrested specialist! Amy does NOT want to read books with us. She doesn’t want to bake cakes, or paint, or do messy play. Any attempt we make at broadening her horizons is often met with defiance and distress. It can be very disheartening and every time we give in and let her watch youtube I feel myself failing her as her parent. I’m not a lazy parent. I hate youtube. I am sick of nursery rhymes. She would have them 12 hours a day if she could. It torments me deep to my soul! However sometimes, you do what you have to do.

I have to remember. When she is crying and shouting – she is struggling. It isn’t me that’s struggling. She is. I feel angry and frustrated and it hurts that in spite of my best efforts I can’t calm her. We have days like this a lot however the difference right now is that we can’t just go for a walk, or to the shops, or indeed anywhere. Every time I bring her in from the garden she descends into crying chaos. I try countdowns, I try “now and next”, I try giving choices/options, I try explaining why we have had to come inside. You can only try and that’s that. I too am struggling massively with not being able to leave the  house. I am used to being in isolation in hospital during flu season, or being stuck home because Amy is poorly, but this is a whole new level. I often crave isolation – but generally by myself with my own choice of music whilst I get on with my jobs. Right now I can’t even keep on top of my jobs.

We have upped our game with PECS/PODD symbols. We still don’t know cognitively where Amy is at. Sometimes she shows great understanding and we know she’s incredibly clever. Other times she is distant and disconnected and doesn’t show she understands. Yesterday she chose “swing” as her activity several times. Today she wouldn’t choose between any of her symbols. I have to remember, if today was a bad day, tomorrow might not be, don’t lose heart. Dust yourself off and carry on. Her level of distress is no reflection of my ability or a parent. In fact if anything I am great in spite of how I am feeling.

I am trying my best and working so much harder than I ever expected to have to.

Have you seen the “rainbow in the window” thing going around Facebook? Children are painting rainbows and displaying them on their windows as a symbol of hope, and something to look out for on their designated hour of exercise. I tried to get Amy to do one. She reluctantly helped me do the red, then became very agitated and we had to stop. I finished it by myself, feeling a bit aggrieved that she saw something most kids would love, as some sort of punishment. I have to tell myself, it’s fine – she’s not into crafts, it’s challenging for her and she can have her own hobbies. It’s just that her hobbies are so restrictive and involve either carrying her everywhere (which is hard work!) or music (which is sending me crazy).

I adore our life with Amy. She’s our world. But I do count down until my next break as the physicality of her care is challenging on our backs. The last ten days has felt like non stop meds drawing, nappy changes, transfers, showers etc. It feels like there is no end in sight right now which I know sounds awful – but we qualify for help for a reason. We did briefly have carers come into the home and it was great,  but in the end I decided it added to the risk of catching the virus. We’ve already had two letters and a phone call to tell us Amy is extremely at risk. So if we are going to do this we are going to have to do this properly. I was so looking forward to our little holiday in the Peak District. It hurts to have something you were looking forward to taken away, but it’s going to be so so good when all of this is over even just to leave our garden!! I really feel for people who don’t have any outdoor space during this time, we are very fortunate in that respect.

My heart aches at some of the stories I have read.

Families not being able to attend their own child’s funeral for example. My heart is warmed by how our community has pulled together. A few nights ago people all over the country stood outside at 8pm and clapped in appreciation for our wonderful NHS. There were cars beeping, fireworks, claps and cheers. It made me very emotional. We have managed to get a few deliveries of food supplies from local companies so that we didn’t have to go to the shops, there are people delivering home cooked meals to elderley and vulnerable people. I have been saddened by the selfishness and stockpiling that has occurred in our supermarkets. People were bulk buying things like hand sanitizer and various other things that as parents of a tube fed child use every single day to minimise risks and infection.

I’d love to know how everyone else is filling their day? Our days involve being in every room at least twice. We have used the swing lots, the standing frame, every toy, the ipad, the tv, we have patrolled the perimeter looking at every flower and leaf, we have sang so many songs. We baked, we painted, we tried all of the things we feel we are “supposed to” do even if they’re not Amy’s idea of fun. Gotta try hey. Whlist she’s awake we don’t really get time to do things for ourselves, we take it in turns to do jobs and make meals etc. At night it feels so good to sit down and watch the TV song free!

So my advice to myself and everyone else is. Do what you have to do to get through this (within reason of course!).

You can not be your child’s entire team of specialists. You still have to be yourself and somehow do things for yourself, even if it’s meditation in bed before going to sleep. Don’t let the judgments of others drag you down. Only you know your personal situation. Don’t compare yourself to the supermum’s of facebook. If their life looks perfect on social media, remember that it’s just social media and not real life. I’ve made Amy look like the happiest child in the land on Facebook recently. We don’t film the tantrums, the meltdowns, the seizures and so on.

Be kind to yourself, be safe, stay home! We will all get through this, you got this.


Coping and Embracing

This is undoubtedly a scary and hard time to be living in 2020.

The uncertainty alone can cause panic attacks. Doctors are prescribing anti-depressants more than ever before. I spent the first several days once the virus hit the US in a state of panic. It began to affect the whole family. My husband and kids noticed the mood change and I felt frustrated with my short temper. This is not the usual me. Of course, as a parent sometimes you lose your patience but overall, I tend to be upbeat and positive.

I stopped watching the news and slowed down my brain as much as I could. I found that stopping the news and embracing our time at home was what I needed. I began making my to do list of things I have been meaning to accomplish. I sat down and made list of activities that I could do with the kids.

My husband and I came up with the best plan to keep our family safe.

It’s not often that we are forced to slow down. Our lives (especially with kids, let alone kids with special needs) are incredibly busy. We rush from one thing to another and from appointment to appointment. We rarely have time to accomplish things on our to do list at home and end the day feeling frazzled. This is the time to relax, enjoy family time and get some spring cleaning done.

I am a busy body. I tend to fill my schedule to the max and then push things I don’t accomplish to the next day. I recognize this in myself and I come by it naturally. My grandmother was the same way until her dementia began to set in.

This slowing down has not been easy for me.

Even now, forced to be home, I still find myself filling up my schedule with hopes and dreams for the day. I have a lot of things I want to do but I know I won’t be able to do them all during this time. I know this because my to do list, like many of yours is 100+ long.

As I sit and stare at our blank calendar for the month, I realize that now is the time to embrace it. One year from now when we are rushing around and staying so busy, we feel frazzled we will wish we had the time to slow down. We will wish we were told to sit and watch Netflix and have forced family time for months. Embrace it.

Coronavirus and Us

Wow how life can change in just a matter of weeks. I mean Life as we know it has been completely tipped upside down and shook and my god have we lost a lot our routines; School runs, commutes, work, lunches, after school clubs, gyms, classes, meet ups with friends.

Then we’ve lost our support, physiotherapy sessions, hospital appointments, hydrotherapy sessions, social workers.

And then boom we have lost our respite. Schools closed, carers can’t get in to see us and suddenly we’re left feeling very alone and vulnerable and we can’t even have our usual pick me up treat because all the coffee shops, pubs and restaurants are closed. And there’s not even a shoulder to snot on!!

I mean perhaps I could cope.

For a week, maybe two but how am I supposed to manage… home schooling, sen schooling, look after a one year old, manage all of Harry’s needs, keep the house tidy and clean, do the washing, fit in the exercise, cook and conduct Harry’s therapy?!

Wine I hear you say?! Well I suppose so but what I find is vital, is for me to look after my mental health during this time by scheduling in some time out for Me.

And yes we can find the time because it’s more important than that English lesson you have timetabled or that physio session you’ve planned. Because if you break then so does the rest of the family.  And let’s be honest the coronavirus doesn’t need to take any more casualties.

It’s not as easy but it is possible to step away from the indoor chaos we are now living in and do something that will help us to relax, de-stress and breath.

For me it looks like going for a walk or reading a book or just having a cup of coffee in the garden.

This is not a luxury it’s a necessity during these stressful and anxious times we’re living in. Take aways are gone, meet ups with friends are postponed, holidays are something for the future.

But whilst we’re in the now, find something to smile about each day. Find time out of the madness just to exhale. And then have some wine!

Waiting for the diagnosis

It’s March. It’s the start of Spring. It’s Cerebral Palsy awareness month.

Something I knew very little about before the birth of my child. Jaxon is highly likely to be diagnosed with Cerebral Palsy within the next 12 months. It’s one of those conditions that you have to wait to see how a child develops to see if they have CP, what type they have and how severely it affects their life before you can put a label on it.

Waiting for our consultant to give us the official diagnosis, well it’s kind of like waiting for somebody to rip the plaster off.

I know it’s going to hurt, but I’m prepared for it and I know it’ll be okay.

Last year, after one of our many hospital admissions we were sent home with a discharge letter that said one of Jaxon’s diagnoses was ‘Cerebral Palsy following HIE’. It took me by surprise as that wasn’t how I’d expected to receive the news. When I talked to his consultant about it at a later date, he apologised that I’d read it there but he said that the official diagnosis will come from him and it will come in a face to face conversation. He said it was too soon to give him the label but to be prepared that it almost certainly will come at some point

I knew that. I’ve known that since Jaxon was maybe three months old as his limbs were very stiff. I knew as he missed milestone after milestone that it was on the cards. I’ve felt utter sadness and I’ve cried many tears over it. But with time I’m beginning to develop a thicker skin, I’m starting to accept life as I expected it will never be but this life that we are living can indeed be beautiful in many ways.

I’m prepared for the diagnosis now, I’m as ready as I’ll ever be and in some ways I just want to hear the news officially.

I want that conversation over. Once it’s done then I don’t have to do it again, I don’t have to hear the words “Jaxon has Cerebral Palsy” for the first time ever again.

It won’t change anything, it won’t make anything better or worse. It may make life slightly simpler as more people have heard of Cerebral Palsy than they have HIE. But it won’t change life as it is now, it won’t change how Jaxon develops or the overwhelming love I have for him.

It’ll just be another label. Not a label that will define him. Just a label.

Looking on the bright side

Things all feel very surreal at the moment. I’m old enough to remember the SARs outbreak, but this covid-19 really seems to have thrown the world into a panic like nothing else.

Like many in our community, Dude, J and I have taken the decision to self-isolate to keep him safe. Both he and I are on the vulnerable list (him far more so); making the switch to working from home fulltime hasn’t been a big one as its something that I do semi-regularly anyway. In that respect we’re lucky.

Good is coming out of this crisis already however – community spirit is slowly coming back.

Suddenly, people are thinking about their elderly neighbours, about the families with vulnerable loved ones where they live. Acts of kindness are being seen and reported regularly. As a family, we are already aware of just how much good there is in this world – the amount of support, love and help we’ve had from complete strangers never fails to humble me. But how good is it to see this humanity spreading out across towns, counties and countries?

Isolating is tough. There is no getting round that… the Dude is missing his friends, he misses his teachers, TAs, his driver and passenger assistant who he adores.  Entertaining him is exhausting, but at the same time I’m being forced to slow down. I can’t maintain my usual manic pace as circumstances prevent me from doing so.

This week alone I’ve spent more quality time with my son than I’ve managed in months and it is BRILLIANT.

I’m being stricter with my work hours – being at home means I stick to 9-5, leaving my evenings free for him and his Dad… usually I’d spend several hours every evening working and checking emails.

This week we’ve baked, read stories, watched cartoons together and Daddy has helped him build lots of Lego. I’ve been able to help Daddy with the housework, so he’s not as tired or stressed as usual either.

It’s a difficult and scary situation for everyone right now. But that doesn’t mean that everything is bad. As SN families we are good at adapting and riding the waves life throws our way… yes, we’re anxious, but we’re also prepared x

What it means to be a mother

“I’m a Mum” that’s a very true statement but one that I’m not sure has completely sunk in even though I’m 17 months into my journey of parenthood. Something I once wasn’t even sure would ever come to fruition.

I was diagnosed with polycystic ovarian syndrome six years ago and when I asked what my chances of conceiving a child were, I was told it wasn’t impossible but it probably wouldn’t be easy. Lo and behold Jaxon was conceived when we weren’t trying for a baby. He wasn’t unplanned per se, I always wanted kids. I’d just planned to wait another year or two. I’d come off the pill to give my body time to readjust and naively believed that, given I’d been told I’d basically be lucky to conceive a child, it wouldn’t happen that fast.

I was still absolutely overjoyed (and panic stricken to high heaven) when I saw those two lines.

It was what I’d always wanted but the fear that a brand new person would be coming into the world and relying on me to keep them alive was very real.

Now, our journey has not been plain sailing and that’s putting it in the mildest terms. It has been hard work. REALLY hard work. It’s driven me to breaking point and there have been days where I’ve wondered how much longer I’d be able to carry on. 

You see when I was pregnant, I never anticipated that I’d be parenting such a complex needs child, especially when all our scans were showing that he was developing perfectly despite the fact I had idiopathic polyhydramnios.

Everything was fine until right at the end when I was 41 weeks pregnant and had a short period of reduced fetal movement. That was the beginning of life as I knew it changing forever.

HIE is cruel. It strikes the majority of families completely unexpectedly and it leaves parents having to navigate an utterly devastating path of uncertainty. Jaxon’s HIE event happened shortly before birth and left him with a severe brain injury. The nine months I’d spent trying to keep my baby safe, following all the rules to ensure he arrived into the world completely healthy felt like they had been for nothing. We still have no answers why, we maybe never will.

I was finally a Mum. Only I was now a Mum to a child who would likely grow up with profound disabilities. Who may never walk or talk. Who may never see or hear. Who may never be independent. Who may need 24 hour care forever. Who may not even live beyond childhood.

But despite my journey into motherhood being entirely different to how I anticipated, it has taught me much more than I could’ve ever expected. It’s taught me how to fight to get my child’s needs met. It’s taught me to scream and shout from the rooftops like never before. I’m not only a Mum, I’m a therapist, a teacher, an advocate. I’ve learnt more medical jargon than I ever did when I worked in health insurance. I’ve learnt how to do pump feeds, suction, give nebulisers, carry out therapies, adminster medication, recognise seizures. I’ve learnt how to read my child who despite his complexity, has a very cheeky, very colourful personality.

I’m not the Mum I thought I’d be but that’s primarily because my son isn’t the baby I thought he’d be. He’s no worse, nor better, he’s no less loved or less deserving of life. He’s just different and that’s okay. 

I’ve had to go through a period of transition like every other parent, only during this transition I’ve had to grieve the loss of the life I expected with the baby I imagined whilst learning to love the baby I’d already had to accept in the very beginning I’d lose. I’ve had to come to terms with the trauma I experienced at the time of Jaxon’s birth and the week following where I had to watch his tiny body vibrate as the oscillator breathed for him. I’ve had to try and cope with the memories of the times I reached through the incubator and felt his ice cold skin during the cooling process as they tried to protect his already injured brain. I’ve had to deal with the lasting trauma of signing an DNR to let him pass away only for him to surprise everybody and turn it all around, breathing entirely unaided once he was extubated. I’ve had to accept that I’ve been more affected than I thought and reach out for help to cope with the difficult feelings and emotions I deal with on a daily basis.

I’ve had to deal with the sadness of the first year as the impact of his injury became apparent, as he missed milestone after milestone. I wished the hours and days away, instead of breathing in and enjoying this miracle that I had in my life. Instead of enjoying my baby being a baby I spent day in, day out wondering what new challenges we’d be facing and where I’d gather the strength to carry on, whilst enveloped in anxiety and grief.

I naively believed before my child was born that the role was simply bringing up, loving and taking care of them.

That much is true of course but on this journey so far I’ve learnt it is so much more than that. I’m slowly learning what it really means to be a mother. It’s accepting and loving my child unconditionally, no matter who he is or what he’ll go on to achieve in life. It’s recognising that my child is incredible regardless of his struggles and finding ways around his challenges to encourage him to be the best version of himself he can possibly be.

It means being ready to take on any battle to ensure my child gets whatever he needs to give him comfort, happiness and security. It means putting my child first every single time and making every decision with his best interests at the forefront of my mind. It’s recognising that I won’t always get it right because there’s no such thing as a perfect parent yet never stopping striving to be the best I can be for him. It’s being ready to do whatever needs to be done because my child is my universe and I’ll do whatever is needed for him, all whilst just trying to be like every other Mum around me; simply loving and enjoying my baby.

Our Seizure Story: Epilepsy Awareness

On December 26, 2018 Sawyer was sleeping in my arms when I noticed he was drooling.

I was super confused by it and a few seconds later his lip began twitching. I called my mom over and tried to get him to respond to me.

We had never seen a seizure like this and to be honest, I was confused.

I yelled at my husband to bring the rescue med, prepared and administered it. It didn’t work and after speaking to the doctor we were instructed to call 911.

On the ride to the hospital he continued to seize but the EMT was hesitant to administer a second rescue.

When we got to the hospital they laid him down and he crashed. He had been breathing too shallow for too long and they had to intubate.

It was one of the scariest moments of my life. He was surrounded by doctors and they had to cut off his shirt in order to care for him appropriately.

Thankfully, once he recovered a few hours later, he was pulling on his tube and they extubated.

The reason I am sharing this story is because when I voiced my concerns about the type of seizure and how hard it was to detect, the doctor actually told me there was no way of preventing it from happening at night.

I explained that if I wasn’t holding him he would have died because this seizure didn’t stop without multiple rescue meds.

Again, he told me there was no way to detect or prevent it. I was FLOORED. Thankfully the nurses asked me several times what I could do and said they wouldn’t release me until I was comfortable.

The nurses told me to contact his complex care doctor and get oxygen and a pulse ox delivered to our home immediately.

That way the pulse ox could detect it and I could administer oxygen until the EMTs arrived.

On October 13 last year, his pulse ox caught his seizure. I was able to go in, administer meds and call 911.

They gave a second med in the ambulance and we were rushed to the hospital.

He was not intubated, he was only observed for 24 hours. Our neurology team helped diagnose him with prolonged and aggressive seizures, increased meds as well as gave us a new seizure action plan.

We now give rescue meds immediately and call 911. Had I not advocated, he wouldn’t be here today.

It is EXTREMELY important parents advocate and it’s equally important that doctors offer SOMETHING to ease the mind of parents.

I am so thankful for our AMAZING neurologist who not only caught his infantile spasms but was also the one to talk to us about SUDEP (Sudden Unexpected Death by Epilepsy) so I knew the questions to ask when he had his “new“ seizure.

As a parent advocating can be extremely hard. You feel as though you aren’t the medical expert, you aren’t qualified enough to make these decisions.

I know exactly how that feels but always remember that YOU are the expert on your child.

You know how their body works, you know how they react and YOU are the expert.

Advocate. Advocate. Advocate.

Thank you for raising inclusive children

It can sometimes be very difficult to live in the moment as a special needs parent.

I frequently try to envision a future for my daughter in a social setting, and where she will fit in amongst her peers.

That is why I consider myself incredibly thankful to be surrounded by friends and family that have embraced her for exactly who she is.

Sometimes I feel as a special needs parent we can push away families of neuro typical children because we assume they could never understand our struggles, rather than giving them the opportunity to learn.

I see from feedback from many parents in the community that this is not always the case, so I definitely do not take these invaluable friendships for granted.

It helps that a large number of the people around me are in the medical and special needs community. It is good to be surrounded by people who get it.

I also am incredibly thankful to my friends that have raised kind and inclusive children.

I try to explain things thoroughly to them (especially the younger ones), and answer all questions (even the uncomfortable ones).

As you might already know, most small children have no qualms with asking every question under the sun.

The moment you shame a child for their curiosity, you create another barrier that will limit the level of comfortableness they have around your child.

It’s not easy answering the tough questions, but I promise it is worth it.

I think it also helps to answer questions before they are asked.

It can be very jarring to see things like a surgically implanted feeding tube for a small child.

It can hurt to see other children starring at yours, but sometimes you have to do a little leg work to invite inclusion.

Sometimes it helps to simply introduce yourself, and explain your child’s situation. The whole thing can be intimidating to other kids.

One thing I have found to be helpful in starting these conversations is by introducing children to a teddy bear with the medical equipment first.

It helps soften the blow. I introduced my friend’s daughter to the teddy bear, and she was so excited to have the opportunity to help feed our daughter.

Ever since she has really taken it upon herself to keep our daughter included in any situation.

If you give children the opportunity to interact and be involved, a lot of the time they really step up to the plate.

Most children are curious and helpful by nature, until we give them hangups or make them feel rude for asking.

Also, I have found a lot of support within the special needs community.

There is a lot to be said for the power of social media when used correctly.

I live in a rural area, so having people I can relate with at my fingertips is an amazing feeling.

I can not imagine how isolating it would feel without it.

I’ve had people go far above and beyond for me that I’ve never even met, and it has allowed me to meet people in similar situations that I would have never met otherwise.

I feel these interactions are so vital in maintaining healthy mental stability for special needs families.

In many circumstances, we are unable to work due to the constraints of therapy scheduling and lack of adequate child care, and we lose that social interaction we so crave.

One very important thing I have learned is it’s not going to be handed to you either.

Sometimes you have to go outside of your comfort zone, and put yourself out there for friendships.