Let's Get Real

Special needs parenting does indeed have its gifts.  It teaches us patience and resilience.  It forces us to be better people.  It forces us to find our voices, so we can advocate for our children. It opens the door to friendships with people we may never have ordinarily crossed paths with.  Every time our child learns something new, the pride we feel is immeasurable. No "milestone" is taken for granted.  We get huge  amounts of joy from the smallest accomplishments, things that other parents may take for granted.

But there is another side to the story. One we are sometimes shamed into not sharing. One we are supposed to "suck up" and hide away, because some people are uncomfortable with hearing our pain.

So let's get honest. In many ways, special needs parents get a bad deal. My husband was fired from his job (with a Disability Services provider!) largely due to taking too much time off to attend Sophie's appointments. They refused to accommodate part time work. I've had to take more than two years off work (and am at possible risk of losing my job)  because of depression and anxiety largely resulting from a traumatic birth, chronic sleep deprivation in Sophie's early years and high stress around Sophie's extra needs.

Make no mistake...I am FULLY aware that there are plenty of parents who have kids with much more devastating issues than Sophie. But I'm sick of minimizing what we go through. And today I'm going to be brutally honest.

As parents to a child with special needs we fight. All the time. We fight for access to services. We fight to be heard. In Sophie's first year I was accused of being "paranoid and delusional" by one pediatrician, an "over-concerned" mother by at least three other doctors, and other unmentionable things by more doctors than I can remember. All because I thought my daughter had a genetic condition, and they thought I was imagining it. They were wrong, I was right. They shamed me and made me question myself, because they would not look outside the square.

A doctor at the sleep clinic at our local children's hospital refused to listen to my opinion that Sophie's chronic waking and screaming were pain related. He said she was waking because I was depressed and we had poor bonding, and if I was just prepared to let her cry it out then she would sleep. Would you let a child in pain cry it out? I wouldn't. We healed her pain (through the GAPs diet) and she started to sleep through the night.  If we had listened to that doctor's advice, she would still be living in pain.

Special needs parents fill in paperwork. All the time. We can't just enroll our kids at daycare or school or ballet classes or soccer and be done with it. We have to have special meetings, and write up information on our children's challenges, educate the teachers and carers in how to help our kids. Check in to make sure that our instructions are being followed. A teacher at Sophie's special needs kindly fed Sophie gluten (which she can't tolerate, and the teacher knew) and she had the hide to tell us she "figured it wouldn't kill her". Sure, it didn't, but was the teacher the one who had to get up in the middle of the night when Sophie was screaming in pain afterwards? I think not.

We have to hold our children down while they scream as they have blood drawn. Cradle them in our arms as they are anesthetized. Cook special meals for them because their systems can't tolerate a "normal" western diet. Console them when they tell us they asked all the kids in their class if anybody wanted to come to their place to play, and they all said no. Console them when, at just four years old old, a child in their class spat on them. We have to trek around and sort the wheat from the chaff when it comes to medical professionals and therapists. We question ourselves ALL the time...are we doing enough? Are we doing too much?

We have to teach our kids basic skills that come naturally to "normal" kids. We have to watch on while they are rejected by their peers. We have to face the shame of seeing that our own kids are so much braver, more positive and more courageous than we are.

We love our children without doubt...deeply, endlessly, honestly. And at the same time we sometimes hate the things we have to do every day. We hate the endless list of doctors and therapists. We hate the fear of wondering when the next thing in the list of issues associated with our child's diagnosis is going to raise its head...for us, with Kabuki... epilepsy, kidney failure, chronic immune deficiency, hearing loss, joint replacements and more. When our daughter complains of sore legs and asks to be carried, we have to wonder whether we are indulging her, or whether she is having legitimate joint pain associated with her disorder. We have to face the stares of parents who watch us carry our child into the water while she is screaming...because they think we should wait until she is ready, and we know she will only ever be "ready" by being pushed past that barrier of fear. We berate ourselves for looking too far into the future, and question whether we have looked far enough into the future to provide the assistance they may need to help avoid some issues.

As grown adults, who have been used to being financially independent for years, many of us (yep that's us) have had to accept financial help from our parents. Which we are so utterly extremely grateful for, but that makes us feel small and beholden and inadequate. We won't deny Sophie the therapy that our parents have helped us to afford, but we feel guilt that we can't do it all ourselves.

Generally we minimize it all. Almost all of the time. We write and talk about the positives, the pride, the joy. Because the average person doesn't want to know, they want to tell us to be positive. And because we are SCARED that we will lose friendships if people know that these deep and dark thoughts are within us. And yes, positivity is needed, and a great thing to strive for. And positive reinforcement is invaluable. But sometimes we just want to be heard. We want to cry for our children's difficult life path. We want to be held in our pain, and allowed to process it, rather than being told to deny it.

I love my daughter. More than words can say. I hate my weakness. And here, today, I am choosing to share it. Not for pity, not to be judged. Just in the hope that other special needs parents might not feel so alone.  And perhaps that parents without children with special needs may read this, and get some insight into our lives. Special needs parents can't hold it in all the time. We are human. We are not "special people", chosen because we have "special gifts to offer". We may perhaps end up being "special", because we have to travel this path. But it is not one I would wish on anyone. Parenting is a challenge for anyone. And sometimes, as special needs parents, we need to grieve and moan and cry. Not all the time, that's not what I'm saying.  But if we are heard, and understood...it is THEN that we can accept the well-meaning advice to "get on with it" and "see the beauty" and fully move into the role we have been called to fill.



Check out Kathy's blog if you would like to follow her journey with daughter Sophie.

Searching for a Diagnosis - Hints and Tips

Some children with special needs may receive a diagnosis very early in life. Either in-utero, or at birth. If a child has obvious physical or medical issues such as a heart defect, a cleft palate, or respiratory issues, then a thorough medical “work-up” is generally undertaken. Some of these children may go home from hospital with a diagnosis in place.

For others, the road to a diagnosis can be a long and difficult one.

“Not all genetic or developmental difficulties are obvious in-utero or at birth” says geneticist and pediatrician Dr David Coman. You might start to suspect a problem because your baby has difficulties with feeding, won't make eye contact, has difficulties with sleeping, isn’t meeting developmental milestones or perhaps has started to regress.

Some parents may quickly recognise a problem, and immediately start to seek answers. Other parents may take longer before they begin to look for answers. This can be due to a range of factors, including the severity of your child's symptoms, awareness of normal developmental milestones, and available supports. If doctors are dismissing your concerns with words like “she's just a slow developer”, “he's just a fussy baby” or 'boys can take longer than girls”, then it can be easy to brush your concerns under the carpet. After all, most of us have been brought up to believe that those in positions of authority know best. That doctors have the answers. That if there is something wrong, they will recognise it and diagnose it. Unfortunately that is not always true. As the parent of a child with special needs, you will more than likely find yourself having to push for answers, question those in authority, and ask for second, third or fourth opinions.

Familiarise yourself with normal developmental milestones. The internet can be a valuable tool for this. There are many available resources that you can access simply by searching for “developmental milestones”. The “Milestone Moments” booklet is one example of such a resource. This booklet is published by the Center for Disease Control and Prevention, and developed in conjunction with the American Academy of Pediatrics. It contains great detail, including “red flags” for developmental delay, and hints and tips on how to encourage your child's development.

While early difficulties don’t always mean your child will have ongoing problems, according to Dr Coman, “developmental delay is always a red flag that should prompt input from a medical professional. It can be ‘global’ in that it affects all aspects of the child’s development (fine motor, gross motor, social, speech and language skills), or it can be confined to specific developmental fields.”

Also, trust your intuition. If you feel that all is 'not quite right' with your child, then reach out, get the ball rolling, and start looking for answers.

Sometimes it may be difficult to reach out – you might be afraid to have your suspicions confirmed. But denial and avoidance won’t help your child. While none of us dream of having a child with special needs, having a diagnosis for your child can be useful for many reasons. It can help you to know what medical issues may need to be monitored. It may give you some understanding of the long term prognosis for your child, and specific challenges your child is likely to face. It can help you to access appropriate early intervention and supports. And it can allow you to connect with other parents who have children with the same condition, so you can share your highs and lows, exchange hints and tips, and benefit from the knowledge of families on the same journey. Don't be afraid to reach out and search for answers. If your child does indeed have special needs, there is much to be gained by knowing exactly what you are dealing with.

Finding Help

If you suspect that your child may have some genetic or developmental disorder, speak to your GP or pediatrician. Come to the appointment with a written list of your specific concerns. Request a referral to a developmental pediatrician or geneticist.

Your doctor may brush off your concerns and suggest that you return in a few months time, so they can better determine whether a referral is necessary. This may be your first taste of experiencing what it is like to have to advocate for your child. Trust your instincts. Time is precious. Early intervention is invaluable. If you believe that further investigation is required, put your foot down. Insist on a referral, and don't leave until you have one in hand.

Prepare carefully for your specialist appointments. Write a list of your specific concerns, including developmental and physical issues, as well as behavioral problems. Simple dot point lists, separated by headers, are generally easier to read than long paragraphs. It is recommended that you include the following categories:

• Details of pregnancy and birth


• Your child’s developmental milestones and when they were attained


• Any physical anomalies you have noticed


• Behavioral problems


• Feeding Issues


• Sleeping Issues


• Family history

It can also be useful to take health records and pictures of your child at varying ages to the appointment. For older children, information from the preschool or school can be extremely valuable.

Update the information on a regular basis and give a copy to every specialist that you see.

Take notice of the specialist's reaction to the information that you have prepared. Are they interested in reading it? Grateful that you have taken the time to prepare? Or do they seem annoyed by your diligence, and treat you as an over concerned parent? If you believe your doctor isn’t taking your concerns seriously, consider finding another doctor. “You shouldn’t feel afraid to voice your concerns,” Dr Coman says, “and know there are no silly questions.”

Keep records of each of your appointments, who you saw, and the reason for the appointment. The number of appointments you need to attend may grow quite quickly. It can be helpful to keep good records from the start, rather than trying to “piece it all together” later down the track. The “Appointment Log” template, developed by Mommies of Miracles, is a great tool for this purpose.

Sometimes (often!) you may find that doctors have long waiting lists. When time is ticking away, and you are desperate for answers, this can be really disheartening. Some tips that may help you to get in the door more quickly:

• Always speak kindly to the medical receptionists - they are the gateway to the doctor.


• Ask to be placed on the cancellations list. This can sometimes reduce your waiting time by months.


• Once on the cancellations list, ring back every few weeks and politely enquire as to whether there have been any cancellations.


• Ask for email or postal details. Send in your dot point list outlining your child's issues. Include a cover letter stating how concerned you are about your child, the impact that not having a diagnosis is having on your family, and your concern that your child is not receiving appropriate early intervention. In one instance, we were told we could expect to wait between 12 and 18 months to be seen by a specialist Child Development Clinic. After I sent my pleading (yet polite) email, including the long list of Sophie's issues, we were given an appointment within two weeks!

If you aren’t getting answers, don’t give up. It took several general practitioners, two pediatricians, a developmental pediatrician, a speech therapist, occupational therapist, physiotherapist, audiologist, ophthalmologist, pediatric dentist, two hospital admissions, a visit to the ER, countless hours of internet research and three geneticists for us to finally obtain Sophie's Kabuki diagnosis when she was 20 months old. It took another year before we obtained her Asperger's diagnosis. During the course of that time I was accused of many things, including being a neurotic first time mother, being over-concerned due to having post natal depression, and, believe it or not, “delusional” because I thought that my child had a genetic disorder. I started to question myself. If all these doctors thought Sophie was fine, perhaps I really WAS crazy! But I knew in my mother's heart that something was wrong. So we kept looking until we found doctors who were prepared to listen and take us seriously. For us, persistence was key.

Research on the internet, talk to other parents, keep looking for answers. By the time we received Sophie's diagnosis I was an expert at “Dr Googling”. Some doctors were frustrated by my insistence on trying to find answers on the internet. But researching can help you to become familiar with medical terminology, to rule out some syndromes, and to find ways in which you can help your child's development without having a diagnosis. We found doctors who were happy to listen to the information we had discovered. And ultimately, those were the doctors who put us on the road to a diagnosis.

If you do receive a diagnosis, you may find yourself experiencing mixed emotions. Even though I had fought so hard to find answers, I shed some tears when we received Sophie’s official diagnosis. It was undeniable now. This was not something that was ever going to go away. The diagnosis was a mixed blessing. It destroyed that final bit of hope that perhaps I was overreacting and everything would be okay, but there was definite relief. I could finally stop searching for answers. And receiving a diagnosis restored my faith in my “mother’s instincts”.

Remember - a diagnosis doesn't change who your child is. He or she is still the same child, with the same likes, dislikes, strengths, weaknesses and cute quirks they have always had. The things you love about your child remain, regardless of what their diagnosis may be. A diagnosis does not change your child – it gives you the ability to educate yourself about your child’s condition, and to take appropriate steps to help them reach their full potential.

Before finishing up this post, I'd like to reach out to those parents who may have been searching and searching, and still haven’t been able to obtain a diagnosis for their child. Unfortunately, some children will remain “medical mysteries', despite all your best efforts at finding answers, and even with the best doctors on board. While I can't imagine how difficult this must be, never forget that there is plenty that can be done to help your child even without a diagnosis. Prior to Sophie's diagnosis, we simply had to work on a “treat the symptoms” basis. Physiotherapy, occupational therapy, speech therapy, horse riding therapy, behavioral therapy. All of these things and more can be done without a diagnosis. There are also support groups for parents who have a child without a diagnosis, including Syndromes Without a Name (SWAN) USA, and the Facebook forum “Syndromes Without A Name (SWAN) International”. You are not alone! The fact that you are looking for answers shows you want the best for your child. With your love and support, your child will reach their highest potential, with or without a diagnosis.

If you would like to read more about our journey to a diagnosis, I would be honored for you to follow our journey on my personal blog about Sophie.

Blessings to all.