Parenting - - Learning Curve -

Jody Ste­wart shares the roller­coaster ride of par­ent­ing a child with a dis­abil­ity.

When you are ex­pect­ing your first child, there is noth­ing that can fully pre­pare you for what you are about to em­bark upon. You can read all the books, talk to all the ex­perts and search ev­ery web­page, but noth­ing is bet­ter than first­hand ex­pe­ri­ence – learn­ing as you go and trust­ing your gut. At the end of the day, the thing that mat­ters most is that your child is healthy and happy.

When Harry was born we thought we were well-pre­pared. I was pretty dead set on get­ting him into a rou­tine and breast­feed­ing him un­til at least 12 months. That all went out the win­dow three weeks into his short life when we learned that he had hy­dro­cephalus. When the doc­tor an­nounced to us in a gen­tle, sooth­ing voice that our son had this con­di­tion, it struck fear and be­wil­der­ment in both of us. What do you say to the guy who tells you your first­born child’s brain is not work­ing prop­erly? What do you do with all the ‘why our fam­ily?’ ques­tions?

The neu­ro­sur­gi­cal team at Star­ship Hos­pi­tal ex­plained hy­dro­cephalus to us as some­times be­ing called ‘wa­ter on the brain’. It hap­pens when the fluid that flows into the brain does not flow out again. As a re­sult, Harry had a shunt in­serted into his brain at three weeks old and again 10 days later when the first shunt failed. An­drew and I were dev­as­tated.

What do you do with all the ‘why our fam­ily?’ ques­tions?

Look­ing back at that time, it all seems to blur to­gether. There was no time to think, only act, and the few weeks we spent in the hos­pi­tal with our first­born child was a bit of a shock to the sys­tem.

Harry was an in­cred­i­bly ‘easy’ baby. He slept when he was meant to sleep and has al­ways been a very good eater. In fact, Harry prob­a­bly would have slept all day if I had let him. I re­mem­ber hav­ing to wake him up to feed him. I didn’t man­age to make the breast­feed­ing goal to 12 months like I had planned, but I wasn’t too hard on my­self about it. Af­ter all, a baby’s got to eat.

Harry be­gan his phys­io­ther­apy at nine months old be­cause he wasn’t rolling over yet. He didn’t crawl un­til he was 15 months old, and only be­gan walk­ing just be­fore his sec­ond birth­day. This stage was really dif­fi­cult be­cause of the com­par­i­son game. That first baby gets watched, poked and prod­ded for ev­ery de­vel­op­men­tal mile­stone and if he’s not achiev­ing them the same way your friends’ ba­bies are, it is easy to feel down and con­cerned. Church helped and hav­ing a com­mu­nity of friends who could pray and give a glim­mer of hope was in­cred­i­bly valu­able. Es­pe­cially when the com­mon phrase we heard when we first started learn­ing about his chal­lenges was, “He will be fine.” When in fact, he didn’t seem ‘fine’ at all. Al­though he didn’t ap­pear dif­fer­ent from other chil­dren his age, he cer­tainly didn’t play or in­ter­act the same way as them. I also found so­lace with the lo­cal Plun­ket play­group – in­ter­act­ing with other mums who had chil­dren who were not ex­actly the same age as Harry was eas­ier and less com­par­a­tive. They were (and still are) in­cred­i­bly sup­port­ive and un­der­stand­ing of Harry’s dif­fer­ences.

Shortly af­ter Harry started walk­ing, he had an in­ci­dent on a tram­po­line and ended up with his leg in a cast for five weeks. We were so sad since he had only just started walk­ing and we all know what a mas­sive mile­stone walk­ing is. In the end it turned out to be a bless­ing in dis­guise be­cause the on­col­ogy depart­ment at Star­ship Hos­pi­tal asked us to com­plete a de­vel­op­men­tal sur­vey for Harry. This high­lighted other ar­eas of de­vel­op­men­tal de­lay, not just phys­i­cal, and he was re­ferred to the de­vel­op­men­tal pae­di­a­tri­cian as soon as pos­si­ble.

This is when the ap­point­ments started rolling in. Oc­cu­pa­tional ther­apy, speech and lan­guage ther­apy, horse rid­ing for the dis­abled, more oc­cu­pa­tional ther­apy, de­vel­op­men­tal pae­di­a­tri­cian and dis­abil­ity groups. I be­came the diary keeper and it was a full-time job or­gan­is­ing and man­ag­ing the places we needed to be each week - a phys­i­cally tir­ing and emo­tion­ally tor­ment­ing task, to say the least.

We de­cided to en­rol Harry for a couple morn­ings at Life Child­care Cen­tre in or­der to help his so­cial de­vel­op­ment, com­mu­ni­ca­tion and con­struc­tive play skills, and to give me a break too. By this point my daugh­ter, Molly, was about eight months old and so it was time for me to be kind to my­self and take a break. Life Child­care and all the teach­ers there were swooned by Harry’s charm and en­joyed cel­e­brat­ing the small achieve­ments he was making with us. It be­came eas­ier be­cause now all the ther­apy ap­point­ments could hap­pen there in­stead of hav­ing to or­gan­ise them all my­self.

An Early In­ter­ven­tion Teacher from the Min­istry of Ed­u­ca­tion got signed up and Harry was given the sup­port of an amaz­ing Ed­u­ca­tion Sup­port Worker. To­gether, we all worked hard and pa­tiently to teach Harry to use the toi­let, make choices, join in with oth­ers, amongst other skills that came slowly and surely.

The com­mon phrase we heard when we first started learn­ing about his chal­lenges was‚ “He will be fine.” When in fact‚ he didn’t

seem ‘fine’ at all.

When you have a child like Harry, you don’t take any de­vel­op­men­tal mile­stone for granted. Ev­ery small change and ev­ery new sen­tence is no­ticed and cel­e­brated.

To­wards the end of Harry’s time at Life Child­care, we ap­plied for On­go­ing Re­sources Scheme (ORS) fund­ing. With many hours of gath­er­ing ev­i­dence and fill­ing out ap­pli­ca­tion forms, we fi­nally sent it in, only to have Harry de­clined. This felt like a ma­jor blow. We went spi­ralling down in de­spair won­der­ing how Harry would make it at school and in life, but the won­der­ful peo­ple in the Spe­cial Ed­u­ca­tion Depart­ment for the Min­istry of Ed­u­ca­tion de­cided we must press on and as­sured us he still had a chance.

With more ev­i­dence from ap­point­ments with psy­chol­o­gists and pae­di­a­tri­cians, it was de­cided that Harry was el­i­gi­ble for the fund­ing. This was a huge an­swer to prayer and mas­sive weight off our shoul­ders and we are in­cred­i­bly grate­ful.

The help of Harry’s team of ex­perts did not end there. I can hardly be­lieve how smoothly Harry was tran­si­tioned into school in 2015. The Spe­cial Ed­u­ca­tional Needs Co­or­di­na­tor (SENCO) at Water­lea Pri­mary School went above and be­yond by vis­it­ing Harry at Life Child­care and en­sur­ing us that his needs will al­ways be the main pre­rog­a­tive.

He was al­lowed to tran­si­tion for as long as he needed to, but we de­cided he could just start full-time on his birth­day and we would see how it went, and he’s loved it! His teacher is thought­ful and re­cep­tive to any in­put or sug­ges­tions we may have. I find this com­fort­ing, know­ing I can be open about what­ever con­cerns I might have along the way.

So far Harry has had a few play dates with class­mates and al­though he seems happy enough, his so­cial de­vel­op­ment is still ‘un­der con­struc­tion’ - it takes some adult in­put to keep him en­gaged with his peers. In fact, re­lat­ing to oth­ers is part of his ‘in­di­vid­ual ed­u­ca­tion plan’ at school, so I know he is work­ing to­wards it and I’m cer­tain he will get there. We see im­prove­ments al­most ev­ery day.

To­day, Harry still doesn’t have a black and white di­ag­no­sis. The pae­di­a­tri­cian says he’s a bit of a ‘mixed bag’ or as I call it, ‘on the brink of a learn­ing dis­abil­ity that can­not be named’. He has sen­sory pro­cess­ing dif­fi­cul­ties and we know this be­cause he has done count­less hours with many oc­cu­pa­tional ther­a­pists, and more as­sess­ments than I can count on two hands. It doesn’t take a rocket sci­en­tist to find in­for­ma­tion about why your child be­haves the way he does. In fact, it has been in­ter­est­ing do­ing our own re­search and us­ing strate­gies from a num­ber of dif­fer­ent tool belts. A bit of this from the autism apec­trum dis­or­der tool belt and a bit of that from the dys­praxia tool belt etc. There is so much in­for­ma­tion out there about sen­sory pro­cess­ing dis­or­der and this has been the great­est tool belt for our sit­u­a­tion with Harry. Even though it is not of­fi­cially a recog­nised di­ag­no­sis in New Zealand, it is in other places in the world and that’s re­as­sur­ing. It is both unim­por­tant and ex­tremely im­por­tant that Harry be given a di­ag­no­sis in­stead of be­ing ‘un­con­firmed’ and for that rea­son, it feels like we are walk­ing right on the edge.

When you are given the op­por­tu­nity to raise a child like Harry, whose dis­abil­ity is nei­ther se­vere nor vis­i­ble, you be­come re­liant on and grate­ful for the sys­tems avail­able. You also be­come re­liant and de­pen­dent on other peo­ple's kind­ness and pa­tience, and be­come grate­ful for the friends who turn up and love your child, and take the time to sup­port you on your jour­ney of grief, re­silience and joy. You learn to be kind to your­self and to your spouse. This can be chal­leng­ing at the best of times, but you per­sist and work through it be­cause if any­thing, the love that is shared is ex­ag­ger­ated by the con­stant strug­gle that is also shared.

At the very best, par­ent­ing Harry is some­thing of a priv­i­lege be­cause it’s like watch­ing a flower open­ing in slow mo­tion. The an­tic­i­pa­tion fol­lowed by small suc­cesses is re­ward­ing al­most ev­ery day - even though it is of­ten tem­pered with grief.

Ev­ery morn­ing I am re­minded how blessed we are to have him in our fam­ily de­spite the dif­fi­cul­ties we all deal with. Harry is funny, charm­ing and happy. He is fun to be around and he has a kind and lov­ing na­ture. What more could a par­ent ask for? Af­ter all, you have got to ask your­self, what is ‘nor­mal’? And does it even mat­ter? When your child is happy and healthy you re­mem­ber that those are the things that mat­ter most and we are grate­ful to have him just the way he is.

When you are given the op­por­tu­nity to raise a child like Harry‚ whose dis­abil­ity is nei­ther se­vere nor vis­i­ble‚ you be­come re­liant on and grate­ful for the sys­tems avail­able.

Harry and Jody.

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