When you don’t feel ‘enough’ as a special needs parent

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By 4pm the panic was setting in. Later afternoon is the time it mostly hits. I begin to think about dinner, cleaning up, baths, stories, and hopefully bedtime, and I realise yet another day has passed and things haven’t changed. When my children eventually settle to sleep my mind will run through all the missed opportunities, all the forms I never quite had time to fill in and all the moments I left my children to entertain themselves. Did I do enough today to help them? Did I do any of the exercises the physiotherapist told me I should? Did I ensure my daughter had her insoles in to correct the turn in her feet? Did I teach them anything or encourage any social skills?

Even if I did something, was it enough?

If I read my children’s speech reports I am reminded of all the times today I forgot to use pictures to reinforce understanding, and why do I suddenly remember all about makaton signs the second my child has fallen asleep?
Then I remind myself I am not a speech and language therapist. Even more important I am not MY CHILD’S speech and language therapist. I am his mum. I can never be ‘enough’ for his speech and language development as that is not my speciality. So I could do more! What parent can say they honestly do all the exercises with their speech delayed child all the time?

If I read my child’s physiotherapy report my heart sinks. Once again another day has passed and we never did those leg strengthening exercises she hates, or invented games that required rolling. When I was busy cooking I noticed she was sitting in that ‘W’ shape again and I left her too it. I never did enough. Actually I don’t think I have ever done enough to satisfy her physical needs. I feel guilt about that daily but then I am sure all parents feel like this sometimes? Maybe it is just me?

I left my non verbal son to watch videos on his iPad today. Not the most ideal thing according to therapists I know, but sometimes I just can’t do it all. I even put my two autistic children in the car and went somewhere today without first reading them a social story about it, showing visuals and going through the route on google street maps! Oh dear, no brownie points for me today!

The fact is they survived. I survived. We lived to see another day, and yes I will always feel guilt at what we didn’t do in terms of therapy or research or exercises, but in many other ways I was more than enough for my children today.

They had more than enough of my time.
They had more than enough to eat and drink.
They have more than enough toys and technology.
They have more than enough clothes to wear.
They have more than enough access to medical and educational support.
They have more than enough love.

Fellow special needs mum, remember this: never let any professional make you feel less than enough. Never let your child’s struggles make you feel less than as a parent. You ARE enough! Your love, encouragement, support and dedication WILL be enough. Did you make it through another day? You were enough today and you will be enough tomorrow.

Never ever forget that!

This post first appeared here.

 

 

 

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Dear parent, please forgive me

Dear parent, please forgive me

I am trying to think what I need to buy for dinner tonight. I don’t need to hear your child screaming in my ear and shouting at you. Is the supermarket really the place to bring your child when they are like that?
Dear parent of THAT child…I am sorry I judged you. I am you now and it is tough. I had no right to look down on you or think wrong of you or your child. Please forgive me.

Oh really? I nearly knocked your child down in the middle of the road! Could you not keep a closer eye on them? Or even better teach them road sense!
Dear parent of THAT child…I now understand completely! One second was all it took! And you told them so often and yet they still did it. It just isn’t alway possible to hold them every single minute of every day. I went off at you that day. I am sorry. Please forgive me. And please look out for my child when you are driving too.

There is NO way I would let a child that age have a dummy in their mouth! That is appalling! It is so bad for their speech, their teeth and it looks terrible!
Did I seriously think that? Gosh I was so ignorant! Dear parent, I am sorry I judged you without thinking. I am now THAT parent with a seven year old clinging to dear life for his ‘dum dum’. I get it now! Sometimes you just have to do what you have to do and ignore others. I have no idea what battles your child was facing or what was causing them to need comfort that day. Who was I to judge? I am now back in that baby aisle with a child three quarters of my height and thinking of you.

Why would you put a child as old as that in a buggy when they should be walking! Honestly some parents are just so lazy and do anything for an easy life!
Someone should have slapped me! I am now THAT parent of a much older child who has only in the last year moved from a disability buggy to a wheelchair. I am still pushing him and I am sure many people think of me now as a lazy parent! If only they knew. If only I had known all those years ago!

I wasn’t nasty before I had children. But looking back I was judgemental. I knew about parenting. I was aware of disabilities.

But I was not living it.

I never knew that pain when you feel the world is staring at you in a supermarket because your child decides to have a hissy fit because you said no. I never knew that shock and adrenalin rush when you suddenly see a car approach your child who has wandered into the middle of the road and your heart misses a beat. I had idealistic views of children and the stages they should go through.

Dear parents, please forgive me.

I am now you. And this is harder than I ever thought it would be. I salute you. And I hope you forgive me.

From a parent who once looked down on you.

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Still a child

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Dedicated to the wonderful children who are too often defined by diagnosis, difficulties and impairments.

He sits in a wheelchair with a bib around his neck. People talk about him like he isn’t really there. They feed him something without thinking wether he likes it or not. He has no say where they take him or how he is dressed. But just because he can not speak do not assume he can not understand. Give him a chance. Would you treat any other six year old like that? Treat him with respect and love. Let him try. Let him be included. He may be disabled, but he is still a child.

He screams in your face when you touched him. He bit himself when you closed the door. He is flapping his hands at the rain falling at the window and isn’t interested when you say his name. You don’t need to shout louder because he isn’t deaf. As frustrating as it is to watch, losing your temper at him won’t help. People talk about him like he is unaware. They had information about him but never took the time to read it or do anything about it. It was filed away and forgotten. People try and engage on their terms taking no account of his interests or sensory issues. Some even physically remove him or close the blinds.window Where is the respect? Where is the love? He may be disabled but he is still a child.

She lies on the floor trying to roll. People are pushing and pulling her this way and that. Talking over her noises and ignoring her pain. They think they are helping. They talk to each other without looking at her face, her eyes and listening to her cries. They have their agenda, exercises to increase her movement that no-one has involved her in. Their intentions are good. But have they motivated her and relaxed her? Would you expect any other five year old to exercise without motivation or encouragement? She may be disabled but she is still a child.

She stands at the side of the playground watching all the others play. The adults find this concerning so they devise strategies to include her and teach the children to not allow her to be on her own. She is badgered by voices shouting her name and pulling her hands. She is forced to join in, forced to interact when she didn’t want to. Why did no-one ask her what she wanted? Did she lose the right of choice and privacy when they diagnosed her with autism? They think they are helping but no-one thought to find out if she was happier watching and joining in if and when she wanted to. While other children can watch it seems she isn’t allowed. She may struggle socially but she is still a child.

He can’t speak so they buy him toys that they think he should like. No-one thinks to watch him and see what his interests are. He wants to look at a flyer from a frozen food shop but adults deem that wrong and would rather it was a book. When he licks the toys they take them out his mouth and take them away. They set up fancy sets with tiny cars and bricks that he can not hold and expect him to play like any other child. They get upset and annoyed when he brakes them and screams. They put dvd’s on he has no interest in because it is deemed more age appropriate. They think he can not speak so he can not communicate. But he can. He would rather the baby toys still but they are too embarrassed to buy them for a six year old. He may be developmentally delayed, but he is still a child.

He swears at your face when you say hello. He came out of school kicking and screaming and threatening to kill his teacher and classmates. The other children are scared of hi20140225-210850.jpgm and the school threatens the parents with the police. They label him as disobedient, a bully, having challenging behaviour. They yell at him more than they talk to him. He is retrained far more than he is ever hugged. He is isolated from his peers and banned from after school clubs. They try to fix complex problems with behaviour star charts and bribery. He may have difficulties, but he is still a child.

Despite physical, mental and and social difficulties these are all children. Children who deserve time, patience, understanding and love. They have a right to choose, to be educated and respected, to be listened to and included. They deserve to explore the world around them, learn in their own way and play with toys they enjoy. They deserve hugs and tickles and kisses.

Difficulties and diagnosis should never define anyone. Even if they can not feed them self, dress them self, attend to their own needs, speak or struggle with social interaction or behaviour they are still worthy of respect.

Because most of all, they are still a child.

Just imagine if that child was yours.

They just sat there holding hands

The long summer holidays were coming to an end, it was getting ever closer to the children’s bedtimes and they were having a little time on technology while I tidied up. They were quiet so I turned around to check on them to see them engrossed in their own worlds but yet so closely bonded in each other’s worlds they were sitting holding hands. It was one of those moments you just had to be there. It was sweet, intimate and special. It was beautiful:

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They didn’t need words (which was perfect since one of them is yet to speak) and they didn’t need to look at each other (even better since they both have autism). A powerful image of two people connected against all odds. A moment of love.

I have had five years and nine months to look at their hands. I remember when their hands were so tiny they could curl round a single finger of mine. I remember holding their tiny hands in a gentle fist while I slipped their arms into little baby grows and cardigans. I remember holding their hands when they needed me to balance them as they took their first steps. I remember gripping their little hands as I showed them how to climb stairs, holding their hands as we walked in shops, climbed up hills or along paths. This week I will take one of those precious hands and hold it as I walk my daughter to school for the first time. Precious moments of love, guidance, bonding and closeness. I know one day she won’t want her mummy holding her hand but until that days comes I treasure that intimacy with her.

One of these little hands will learn to write soon. But while her brother may not do this for a long time to come it doesn’t stop them being close. Summer has brought them so much closer to each other. It has given them more shared experiences together and time in each other’s company. They prefer to be together. Education is separating them but love is joining them.

And while one of these little hands will turn pages in a book, paint pictures, thread beads and cut and stick things the other hand is still be used as an essential means of communicating. It is only in the last year that my son has leant to use his hand to point. I still dream that one day he may use his hand to blow me kisses, or wave, or stroke my face. But right now I rejoice he still uses his hand to take mine to what he wants.

Therapists want my son to take my hand less and use other means of communicating. While I see the advantage to this there is something so special about a little child leading you by the hand to show you what he wants. It connects you physically when there is no language. It tells me he loves me without any words leaving his mouth. And as he uses photos and pointing more I miss those moments when he sought me out, pulled at my hand and led me to what he wanted.

I may not always be around for these children, though I pray God sustains my years on earth for many years to come. But seeing them together, knowing that despite all their challenges they have a deep love for one another, that from the moment they were conceived they have been connected. Seeing my daughter put her hand over her brothers to teach him what to do in a new game, watching how she holds a straw in a glass of juice for him to help him have a drink, observing how she tenderly strokes his arm when he gets upset…I just know that they will always have a friend in each other.

I wanted to kiss them both, explain how special this moment was to them, talk to them about the significance of what they were doing… Instead I smiled at them and took a photograph… While they just sat there holding hands.image