Mám autistické dieťa. Cesta a výzva zároveň

lucec: Jakubko je este strasne maly, fakt sa moze este vela zmenit, v jeho veku mojho Lukaska nezaujimalo nic, ziadne auticka,volantovanie..by som to skor brala ako pozitivum, pokial to uz nie je samozrejme obsedantne, co podla popisu nie je 😉 . Ak si pozries diskusii nestandardne deti, tam je vela postupov, ako pomahat, trenovat ocny kontakt,cvicit ukazovanie prstom, porozumenie,info o logopedoch 😉 Podla mna robis pre maleho dost, ja som v tom case este netusila, ze mame problem a nerobila som nic, zacala som na malom makat (ucit ho jest lyzickou,vkladat tvary...) az v 1 r.11 mes. Ale nic nelutujem, ono ak citis, ze by si mala robit nieco uz teraz, tak skus logopeda,homeopata, trenuj jemnu motoriku, jedenie, samostatnost..A ak sa ti maly ani po polroku nebude pozdavat, objednaj sa k dr.Janosikovej na rediagnostiku. Pochybujem, ze sa da v tomto veku urobit este nieco ine 😵

No ja som bola u Dr. Jánošíkovej minulý rok a žiadne opakované vyšetrenie nám tiež nedala. My sme tiež dostali dg. špecifická porucha reči a úzkostné stavy, čo sa malo po roku v normálnej škôlke napraviť. Nič sa nenapravilo, aj keď pokroky síce sú, ale ťažko vybojované a z normálnej škôlky nás po tom roku pekne vypoklonkovali, že je ťažko zvládnuteľný a potrebuje špeciálny prístup. Ja ani nemám chuť ísť k nej na nejakú rediagnostiku.
Ja už ani neviem, či fakt sa mám hrať na "mŕtveho chrobáka" a čakať, že to všetko jedného dňa príde, však je ešte malý. Dokedy mám takto čakať?! ☹

@andreabe to ti verim ze ti odlahlo.. 🙂

on tam chodi aj teraz skolka skoncila, ale nemocnica ide este aj pocas jula, prave odisiel pride az po 16 hodine;. 😉

oci uz robi menej na bok.. teda malo .. teraz.. niekedy aj ked sa tocil tak daval oci na bok vydrzal sa tocit okolo vlastnej osi aj 20 minut bez toho aby s amu hlva tocila, aby spadol!!! no bolo to cudne.. a vzdy oci na bok, bod prichodu a tocil sa.. 😒

no pato je velmi silny..
tera zj eto ine pred tym ked mal krizu tak ublizoval sebe hadzal sa do zadu dovsetkych stran bez toho aby pozeral kde to robi.. nehovorim ked bolo sklo za nim , ako mi bilo srdce..
tera zto otocil zlost frustraciu si vybija na nablizsom cloveku pri nom, alebo rastline je to dost sokujuce snazime s ato kludnit.. je to aj cast jkeho diagnozi a nebudem klamat bojim sa co bude v buducnosti ked vyrastie.. ☹

zuzi:ja normalnu skolku ani nejdem skusit 😔 ale stale v hlbke duse verim, ze sa mu polepsi a bude ok..

erika:tak to je fakt podobne, len u nas to je vsetko presne take ale v miernejsej forme, toci sa okolo svojej osi, ale da tak 3 kolecka, viac ho to nebavi (ale hlava sa mu toci, chodi potom ako opity 🙂 ) On hlavne chodi a pozera do boku, hlavne, ked je v novom prostredi, doma malo 😕 no je to cudne, okolie uz divne pozera 😒
Frustraciu si vybija hryzenim do rucicky, zakazujeme mu to a celkom s uspechom. keby sa mi hadzal ako Patko, by som mrela strachom, aby si neublizil..
A nie je sanca na zelpsenie, ze by sa ako Patko spravnou terapiou skludnil a bol v neskorsom veku dobre zvladnutelny?
Lebo ja nejako stale verim na zazrak, ze to proste nakoniec bude dobre, ze bude maly mozno trosku viac exentricky, ale v ramci sirsej normy. No vecna optimistka som.. 😵

@andreabe sanca tu je.. a preto je v nemocnici.

vies ak sa to nezvladne teraz tak hrozi ze bude ; ako psychopat nicit vsetko bez stipky citu.. ☹ ☹ znie to hrozivo ale ja dufam ze sa to zmierni a moja laska tiez nieco urobi.. proste verim a dufam ale u neho je mozne vsetko , schizofrenia a ine mozne diagnozi nikto nevie poved ☹ t do predu..
jedna vec je uz lepsia ze uz o sebe nerozprva apathologicky v spojeni s niekym inym, ako neaka postavick as telky a podobne.. malo to uz robi.. ale uz nie tak vel aako pred tym , a hlavne nie v nemocnici.. 😉

inak sorry za jazyk niekedy prekladm nazvy ako s apouzivaju tu , a znie to tak strasidelne v slovenscine 😉

@andreabe Nas po muroch nechodi a ani nechodil. Ani s tymi ocami sme to nemali to je zvlastne... jeden cas si okusoval kozu na rukach skoro az do mesa 😕 ale po mesiaci stravenym doma medzi slovenskymi detmi to robit prestal. Chodil tam do skolky ten mesiac kym sme boli doma.
Co je to (SPD)? Skus v angline snad to dookazem prelozit 😀 Maly horil prve slova do roka mama, tata,baba a tak ale po roku prestal. A nikdy nevedel na rzlucku nikomu zamavat ze papa a ani zvuky auticka nikdy nevydaval aj ked sa s nimi harl. Ked nieco chce stale pistal ukazoval. ☹ Potom zacal pekne pomaly. Do skolky chodil. Teraz pojde do Specialnej skoly na 1 rok aby vlastne zistili aku pomoc vastne potrebuje. Tam bude mat svojho vlastneho logopeda. Budu ho tam sledovat,ale vraj hned ako zistia ze tam nepatri tak ho poslu ihned do normalnej skoly,ja osobne si nemyslim ze by tam chodit musel ale psychologicka si mysli ze 1triedu proste nezvladne vo velkom kolektve a tam v tej Speci ich bude 9 deti. A keby sa potvrdil Autizmus vraj moze ist aj donormalnej skoly ale d triedy co je pre autikou aze uvidime co bude. Co to je DSS?
@erikasadek no nemas to lahke musi to bt velmi zle ja by som umrielala strachom aby si nieco nespravil. Aj ked nas kolko krat vylezie do okna a vobec sa neboji ze vypadne 😕 za to ja mam paniku.

Inak som zabudla dodat ze nas maly poraze rozpravky v cestine,slovenstine,angline a nemcine takze sa mu to miesa dokonca si po nemecky vypita aj mlieko a syn a podakuje 🙂 takze je dost mozne ze to ma v hlavke len pomiesane . 😅

@jarka82 ani ja neviem co je to dds a ani ine skratky 😀

no lahke to nie ale da sa zvykla osm si. 😉

inak vcer ami povyhazdoval oknom hracky.;a na okne mame barieru samozrejme inak uz by davno vypadol. 😠

skoro ma slak trafil..

erika:v pohode, tie nazvy nezneju pekne, ale ked je to tak, co clovek narobi, ze 😔 urcite vela urobi dobra starostlivost, isto niekde vnutri citi, ze ho veelmi lubite a to ma velky vplyv vsetko 😉

jarka:on nechodi po muroch 😀 on len chodi popri muroch a pozera pritom doboku na ten murik 😝
dss je domov socialnych sluzieb, funguje ako skolka, kolektiv max 6 deti
inak je mozne, ze je Martinko iba pomyleny tolkymi recami 😉

Moj sa zase dost boji, ked ho dam na nieco vysoke, tak sa boji pohnut,aby nespadol. Papa daval snad ako rocny, potom prestal a teraz opet zacal, kyva papa a krici pri tom papa 😵

To o tom SPD neviem najst link, ale mam skopirovany text, tak to hodim do dalsieho prispevku.

Semantic Pragmatic Disorder
"Most people in the field of autistic disorders do not consider there is any value in separating semantic-pragmatic disorder from the autistic spectrum. The disadvantage of doing so is the failure to recognize the child's whole pattern of disabilities and therefore a failure to address all their needs. It is also most misleading for the parents."
Lorna wing MD, FRCPsych

I am the mother of a child with Semantic Pragmatic Disorder. I was asked to write this article for the Hi2u website so that people unfamiliar with this disorder can begin to understand what it means to have SPD. My hope is that it also gives teachers and other professionals involved with a child with SPD an insight to what life can be like for the parents and carers too.

What is Semantic Pragmatic Disorder ?
Semantic Pragmatic Disorder is language/communication disorder, commonly found in children on the Autistic Spectrum. The disorder's validity as a sub type of developmental language disorder, which is where it was originally defined by Rapin and Allen back in 1983, has been questioned on and off since it's introduction because of the autistic features the children often show. The professional community is slowly extending the boundaries of the spectrum to acknowledge disorders such as SPD and high functioning autism that can blend into the realms of "normality".

Children affected by this disorder have difficulties in the area of the "triad of impairments", typically associated with Autistic Disorders, ie. social interaction, communication and imagination. Their autistic features, however, are mild, but it is important to recognise these when supporting the child.

Children are usually first identified as having this disorder by the noticeable delayed language development. Parents begin to feel that there is something not quite right, but just cannot put their finger on the problem. Language starts to appear eventually, but there is often a severe impairment in understanding and using language and applying linguistic rules in conversation. Typically the child will sound odd and stilted in conversation, using memorized phrases inappropriately, out of context, echoing language like a parrot, not sticking to the topic of conversation, not knowing what is being talked about, and not knowing what to say in return to a question asked. He/she will take language quite literally, and will struggle to understand the many idioms in use in the English language today, i.e." raining cats and dogs" will mean just that to a child with SPD!

SPD children often fail to grasp the important points in a conversation, they will have difficulty processing information especially in new situations. Generalising what they have learnt in one situation and transferring that knowledge to another can be problematic for this child. They will often have poor body language too. They may stand too close to their conversational partners, avoid eye contact or may walk away in the middle of a conversation. He/she, once the language starts to progress, will start to talk fluently and articulately, eventually achieving good grammar and a good vocabulary, but they will continue to be far more capable of talking than understanding the meaning of what is being said. Obviously, difficulties with both the Semantic (meaning of words) and Pragmatic (social use) aspects of language can have an effect on the child's social life. Other children may reject the child and this can have an effect on the child's self-esteem. The need to be social is quite strong in the SPD child and he/she will try hard socially. He/she will be willing to converse, but his/her difficulties will become more obvious as the language gap widens between him/her and his/her peers. Some children may have to be placed in language units, but this is not always the case, with good support in mainstream they can do very well for themselves.

How SPD affects our family life
As, a toddler, I knew that something wasn't right. I thought my son was deaf. He would spend a lot of time watching his television on his own in his bedroom, jumping up and down repetitively on his bed! My attempts to have him stop this behaviour were fruitless. He would play with toys, but not REALLY play with them. He would, for example, line up a full set of Mr Men books from one end of the living room through into the hall! Then after that, it would be Playstation games! He loved to play with his cars, and would occasionally line them up too! But his interest, when it came to entertainment, was the Playstation console. To this day it is an obsession that he cannot live without.

When my son talked initially, he spoke with jargon, words that just sounded babble and made up. He would echo language, repeating the last 3-4 words of your sentence back to you. He was very chatty, but you could not understand what he said or indeed wanted. As you can imagine trying to express your needs and not having someone understand what you want to say would be immensely frustrating. His frustrations were released through a general non-stop tearfulness. Every few minutes we would have a few wails. This is what I found to be draining as a mother. Mothers' have a natural instinctive urge to respond to a child's cries. Having a crying child 24 hours a day puts tremendous strain on a mother. I remember ringing CRYSIS one afternoon in despair and being told, "He would grow out of it!" Well, I suppose he has in some respects, it's just that the wailing is a lot louder now, but less frequent! 

The toddler years passed and the school years approached. My son was nowhere near ready to start nursery. I had to delay his entry into nursery by a year. At almost four he was still in nappies! His language was poor. I mentioned it to my Health Visitor at the time, who said that it did not seem to be a problem!

Thankfully, when my son started nursery, he was lucky enough to have a fully qualified primary school teacher. I can rerocking
member the day vividly, when she called me over for a quick chat to tell me that she thought my son was Autistic. My world collapsed that day. I can still feel the pain in my heart right now whilst writing this…four years later! Ok, it could have been btantrumigroken to me a little better than that, but I hold no grudges at all. I owe everything to this lady, she was the one who was vigilant enough in the group of professionals that had seen my child regularly, i.e. the GP and the Health Visitors, etc. to raise her concerns.

The result of her vigilance was a referral to Speech Therapy and an Educational Psychologist. The teachers, in the normal classroom setting, carried out the Speech Therapy, i.e. there was no withdrawal. However, we started to see some behavioural problems once my son was in full time schooling with very little support.

Obviously, the tantrumming, anxiety and behaviours we were seeing were due to the processing difficulties my son was having and the increasingly changing situations and surroundings and his loss of routines. Not being able to understand your world leads to an inability to predict outcomes and events, this in turn leads to insecurity. Insecurity causes anxiety and then the child tries to reduce stress by carrying out repetitive behaviours, such as, rocking and then also uses coping strategies such as crying, tantrumming, hitting etc.

I wanted help from school for the emotional side of his disorder, but I was not getting through to the teachers who told me, "He's OK in school!"
That may well have been the case, but I doubted it. The previous school's teachers' interpretation of how he coped was remarkably different and more along my lines! With no help forthcoming for the frustrations of conforming to his school day being vented on release from school and at home, I sought out a Child Psychiatrist who diagnoses Autism. I still had no formal diagnosis, but went to him with my concerns that this indeed could be an Autistic Spectrum Disorder.

The result was a diagnosis of SPD…and a years worth of therapy (more to keep me sane I think! ).

Today, despite all of the problems we have been through, especially trying to secure help for my child, (which incidentally is ongoing-I won't bore you ), my son is coping really well in mainstream and is achieving some good grades. The future is not as bleak as was painted back in his nursery days.

If you read this as a parent of a young child just diagnosed with this disorder, I would say that you must have hope and never give up. The very nature of this disorder is that it is a developmental disorder that WILL improve with age and support. The babbling incoherent three-four year old child will become intelligible and able to make a good conversation. Some people suggest that, as an adult, an SPD child will just be a little eccentric if anything…well, how many people do you know that you could say that about? There you go! Do not worry.

I have a web site all about SEMANTIC PRAGMATIC DISORDER that may interest you if you would like to find out more. You can listen to some examples of my son's speech and see some of his work too. Please come and visit, I would love you to sign my guestbook whilst you are there too. My site is linked to a friends Autistic Spectrum Disorder site. She has a message board for parents who have children with ASD and SPD. If you are a parent of a child with SPD, why not pop in and say hello, everyone is very welcome.

Written by Babs, mother to an 8 year old with SPD

http://en.wikipedia.org/wiki/Pervasive_developm...
totoje patrick, a ked si to prepnete na franinu tak si vsimnite ten rozdiel slovny. 😉

Ahoj Eri ,

toto som nasla ako rozdiel medzi pervazivnymi a psychotickymi poruchami, ale specialne pomenovanie u nas asi neexistuje ako si uz viackrat vysvetlovala, ten termin TED je specialne francuzsky asi...

Psychotické poruchy- psychózy sú charakteristické stratou schopnosti adekvátnej orientácie v sebe samom i v okolí. V detskom veku sa vyskytujú vzácne. Patria však k veľmi závažným poruchám psychického vývinu. Psychóza je totiž duševná choroba, ktorá zasahuje hlbšie do vnútra osobnosti i do ľudských vzťahov a mení spôsob, ktorým človek prežíva a vníma sám seba, druhých i okolitý svet. Najtypickejším príkladom takejto poruchy je schizofrénia.

Pervazívne poruchy vznikajú v detstve a majú hlboký dopad na psychický a sociálny život postihnutého. Závažným a komplexným spôsobom poškodzujú psychický vývin. Najvýznamnejšou poruchou tejto kategórie je detský autizmus. Autizmus má veľa spoločných znakov so schizofréniou, ale treba ich odlíšiť. Zásadný rozdiel spočíva v tom, že autizmus je vrodenou poruchou poznávacích procesov a socializácie (prejaví sa najneskôr do 30 -36 mesiacov), zatiaľ čo schizofrénia je psychotické ochorenie, ktoré sa prejavuje neskôr. Schizofrénia vedie k zmene už rozvinutej osobnosti a jej štruktúr. Vývoj autistických detí je odlišný už po narodení. Pervazívne poruchy charakterizuje kvalitatívne zhoršenie recipročných interakcií a spôsobov komunikácie, ako aj obmedzený, stereotypný repertoár záujmov a aktivít.

Ahoj lucec, maly krasne reagoval aj spolupracoval, je sikulka, naozaj. Pokial vas uz neobjednala mne z toho vychadza, ze je to fakt ten naruseny komunikacny vyvin a keby mala Dr. Janosikova podozrenie na autizmus, tak vas este objedna, pocula som, ze diagnostikovala uz aj 2 rocneho autika, ale to bol cisty autik 😒
Chapem, ze chces malemu pomoct 😉 skus vbehnut do temy "nestandartni deti ", tam to ma pod palcom Siss a ta
ti poradi ohladne roznych pomocok, aktivit a cinnosti ktore dieta motivuju k spolopraci. Ja by som este chvilu s dietami pockala byt tebou..... i ked upravit jedalnicek je jedine prospesne - muka, mlieko, cukor a sol su biele jedy, takze cim menej, tym lepsie 😉 hlavne vela ovocia, zeleniny 😵

Jarka,
pokial chces este info o MB12, poslem ti potom jeden link, kde si to mozes nastudovat, chcela som tu nieco nakopcit vcera a neslo mi to nejak 😔
inak v Irsku predavaju lizatka REVITAL POP, pokial sa nemylim a tie obsahuju MB12, nikde inde v Europe ich nedostat, tak mas vyhodu 🙂 , pre nas je najschodnejsie to Milano 😉

Zuzanada,
ja by som asi toho mrtveho chrobaka nehrala 😉
ale ved ty si tusim bola v Prahe u Krejcirovej, takze ho nehras ani ty 😵
davas aj nejaku podpornu liecbu ? a maly ide do speci skolky?
ja som prave normalnu skolku zavrhla, neviem si tam maleho predstavit medzi 18 detmi........ a davam rovno do Andreasu i ked mame zatial dg. naruseny komunikacny vyvin, maly tam bude mat svojho terapeuta, ktory sa mu bude individualne venovat a autika mi tam z neho urcite neurobia 😵 a ked sa vylepsi lahko ho prelozim 🙂

@mon25 si si dala namahu, no ano mam problem najst v slovenscine adekvatne vysvetlenie.. 😒
TED je specificke francuzske, ale predtym s ato volalo psychoza ale zmenili kvoli strachu rodicov... tak zmenili meno, ale diagnoza ta ista. ☹
j eto tazke.

Ano Eri,
je to tazke .... pre vsetky co sme tu 😔

bola som dnes u tej homeo akupunkturistky, robila malemu akupunkturu laserom 😵

mam na ten detox zatial THUJA OCCIDENTALIS
potom NATRIUM MURIATICUM a NUX VOMICA
potom REMEDIUM ANTIDYSCRATICUM
idem to pokukat ako to vyzera s dostupnostou a cenami, potom ta mozno budem otravovat 😅
na ten detox MMR to nic konkretne nie je ... nieco sa dda objednat z Rakuska, asi by som potom radsej skusila ten tvoj ROR po konzultacii s nou

ahojte vďaka mon za povzbudenie aj za rady 🙂 ja viem možno je to priskoro takto stresovať ale nechcem nič zanedbať a keď sa dá tak chcem malému pomôcť čím skôr Dr. to úplne nevylúčila ale povedala že ak by aj náhodou takto vidí skôr na Aspergera a že bude určite funkčný tak tým sa utešujem dúfam že sa nemýlila lebo dnes sme mali taký hrozný den že som z toho na nervy jakubko vrieskal za všetko jedno dievča ho zobralo na ihrisku že s ním ide na šmýkalku tak sa dobre nezašiel od revu 😒 ja verím že sa to raz zmení a začne si všímať aj iných ľudí a iné deti a že mi raz povie že ma ľúbi

lucec,
presne..... 😵 .... chovanie mojho syna sa presne odzrkadluje na mojej psychike, ked ma dobry den a ja vidim nejaky pokrok alebo ze je spokojny, tak mam fajn naladu, ale ked ho po pol hodine vrestajuceho taham uz hojdacky, skoda hovorit 😀
ale v poslednej dobe ma stale objima a pusinkuje a zjavne sa tesi ked ma vidi, to je naozaj super a fakt ma to velmi dobija 😵 😵 😵
mali sme totiz obdobie ked si ma maly vobec nevsimal a keby som odisla aj na tyzden bolo mu to jedno ..... aj ked som bola sklonena priamo nad neho v postielke, ani na mna nepozrel, naschval.. ☹ to bolo najhorsie, naozaj, na to si vzdy spomeniem ked mame taku " hyperaktivnejsiu chvilku" 😉

Slavi,
aby som nezabudla 😉 bola som fakt dojata ake uzasne videjko "domdam" urobil Dominik pre braceka 😵 😵 😵
mas uzasnych anjelikov 🙂 🙂

ozaj a co MMS-ka, uz si si poriesila neduhy ? Daj nejake info 🙂

Karin,
😀 😀 😀
aby som nezabudla .....
otazka : Kde jsiii ?
odpoved : No, na FB, preci ......

@mon25 jasne porad sa s nou a daj mi vediet 😉

inak klinec po hlavicke moja nalada robi vela na pata ak ja mam orby den a naladu tak , na 90% aj on.. 😉
karin tak ako t 😉 d 😉 asek.. uz ste zdravi.. 🙂

inak, dnes si tu vystacim 😅, to bude tym futbalom v telke 😀

@mon25 ja prave stahujem twighligt 3 a bude dne spred telkou. po futbale uz s atesim ako mala

Erika,
kukala som na chvilu na tie homeo co mam predpisane na nete a vsade kde sa daju homeo objednat maju tak 1 vec, nikde vsetko dokopy 😠 to este bude sranda to pozhanat 🤐

ja ti poslem poznam vsetko .. lahke 😉

Erika, si poklad 😵 doriesime 😉 pekny vecer pri filme 🙂

@mon25 dik moja, neboj to sa vyriesi a film je superrrrrrrrrrrrr 🙂
aj tebe pekny vecer 🙂